“May your choices reflect your hopes, not your fears.” ~ Nelson Mandela
It’s not uncommon when perusing the internet to see the word “easy” associated with “thyroid cancer”, or described as “the best kind of cancer to get”… as if of all cancers, this one is somehow less difficult, less arduous, a walk in the park or a piece of cake cancer.
Nor is it uncommon for thyroid cancer patients to be told something in a similar vein by their doctors. And of course, many of those doctors will use the “one little pill” pronouncement about the treatment afterwards. Easy-peasy, lemon squeezy!!
So where is the truth? Do you have reason to be nervous about your surgery? About your cancer? Is it that easy? What will your life be like after surgery?
One side of the story
Many thyroid cancer patients do report that all went well in many ways. They caught it early enough. It didn’t spread to their lymph nodes. Some didn’t even have to use pain medications after their surgery. If some did, it was short-lived. Others moved over to Tylenol after going home. Or ice packs. Drains were removed smoothly. Recovery went smoothly. Energy returned in several weeks. And they report that the cancer remained gone.
But here’s the other side of the story which completely dispels the myth that thyroid cancer is easy or the “best” cancer to get.
1) No matter where the cancer is, the emotional reaction is the same.
Many a thyroid cancer patient will tell you about their fears, depression, aloneness or anxiety when they were told. Or the denial, anguish, anger and stress they feel. Or the numbness. Or the fears of it returning. Or the unknown.
2) No surgery is fun, and that includes thyroid removal
Who wants to endure the pre-op or the aftereffects of surgery. No matter if some do better than others, it’s not fun to be in a hospital, be put to sleep, the waking up, the drains, the recovery, the discomfort, the time away, and the cost.
3) Many thyroid cancer patients have to endure RAI treatment after surgery and the side effects
RAI stands for Radioactive Iodine Ablation, also called I-131, given in either in liquid or capsule form. Since the thyroid easily absorbs iodine, and the radiation is strong, it serves to destroy any remaining tissue or cells that might still have thyroid cancer in them.
And side effects are far from pleasant and can include isolation, stomach problems, heart palps, neck tenderness, all over achiness, changes in taste, salivary inflammation and parotitis, facial or neck redness or “sunburns”, peeling skin, fatigue, fogginess, nausea, dry eyes, irregular period or other reported problems.
Then comes the reported risks that can come later in life due to having RAI, which include “bladder, breast, central nervous system, colon and rectum, digestive tract, stomach, pancreas, kidney (and renal pelvis), lung, or melanoma of skin”. Keep in mind this is about “risk” rather than a definite outcome, but it’s not fun to consider.
You can read of one patient’s opinion and experience with RAI titled Why have million of patients been treated with RAI?
4) The fear of recurrence always lingers!
Life-long monitoring is a sure bet when one has had thyroid cancer. The itchy reminder that it “could” come back never goes away when one has to have neck examinations, certain thyroid blood tests or neck ultrasounds.
5) The “one little pill” mantra of easiness is foolhardy
That one little pill is a reference to T4-only, aka thyroxine or levothyroxine, also commonly known as Synthroid or other brand names. And reported patient experiences for all too many reveal continual problems, sooner or later. Equally as silly, that one little pill leads to the use of many other pills to treat the symptoms of continued hypothyroidism that many report finding themselves with while on the T4-only, one little pill. Those include statins, anti-depressants, anti-anxiety or pain meds, to name a few.
The conclusion?
You are not alone. Thyroid patients know that thyroid cancer is not as “easy” as they make it sound, nor is it the “better” cancer! We are with you! Join the group below for camaraderie, wisdom and support!
This page was brilliantly updated July, 2015 to reflect even better information. Enjoy!
**************
- Let the wisdom of other thyroid cancer patients guide you! https://stopthethyroidmadness.com/words-of-wisdom-thyroid-cancer/
Important note: STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
Write a new comment below
200 Responses to “THYROID CANCER IS AN EASY CANCER?? Patients are appalled!”
Shelly
I should have known, I have been schooled in, nutrition, anatomy, physiology, hematology, pharmacology, microbiology and I totally missed that this was my Thyroid, I have Multiple Sclerosis and thought my Lymph-node swelling was a result of inflammation drainage from brain to chest. DUH!
If I had to do it all over I would have Increased my salt intake slightly and started eating eggs 3x a week. I was not catching my low T S H, I do best when TSH Is around 1.00. That means once a day my Pituitary is sending 1 signal to my Thyroid to release Thyroxine. When your glands are tender DO NOT go into denial, get to an oncologist right away, even if you have to pay out of pocket for a short time. BECOME A PITBULL, poodles get brushed aside. As patients we think being a doctor means more than it does. Today doctor is just another name for a lawyer. Finding a Doctor is like trying to get quotes for a huge house renovation, you always get three estimates and your always PROACTIVE! Doctors are just people trying to make money and buy worthless objects and patients are $$$$$$$
Shelly
Don’t know how I end up at this site. I don’t believe in accidents.
I have made a HUGE mistake. Nodules run in my family. Mine were found after my 2nd son was born in 1991. I have been on 100mcg Synthroid for years. I had the radioactive Iodine test done over 20 years ago.
(Levothyroxine doesn’t work). Jan. 2016 I had Thyroiditis, so I had a biopsy. Nodules still, cold. They sent me to surgeon and of course he said, let’s take it out….I didn’t. For 19 months I have been struggling, thinking my EBV virus was just acting up. Now my nodules are hurting and my ears and my chest nodes are swollen. I see the same surgeon in 2 days and I know it has gone cancerous and is in my lymph nodes.
AMERICANS QUIT SAYING IODIZED SALT AND EGGS ARE BAD.
Parents should be give a packet on ESSENTIAL nutrition, like Iodine, amino acids…
Marilyn
Two members of my family had thyroid cancer about 20 years ago and are fine today. Some other members have had cancer in other parts of their body and died. Yes, I will take thyroid cancer any time over the other kinds.
Susanne sacco
I should also add that 2 cousins had thyroid cancer and my brother had a non cancerous thyroid tumor.
Susanne sacco
So sorry for all of your suffering. Just looking for advice. I have nodules in my thyroid and a dry cough. I think the description in the ultrasound sounds on the more suspicious side over the benign side according to my research. But I can get into the endocrinologist for 3 months. Do you think that is okay?
Thank you
Shane
Diagnosed with papillary thyroid cancer in June of 2016. Refused surgery because I want my vital organs (that’s just me). Have been researching and healing for the last year and good things are happening. Take your time. Get educated. Don’t be in a rush to do anything. My tumor stayed the same size for almost a year. I can feel it and I have checked it every day since I was diagnosed. Also had multiple ultrasounds done. My new protocol is working. The tumor is getting difficult to find these days because it has gotten smaller. Don’t believe me? I don’t care. True healthcare is on the rise! People are waking up!
Myra White
I wonder if this person ever had surgery for their Papillary Cancer or even had Radioactive Treatment for the thyroid cancer? I wonder if they are still living after refusing surgery and treatment?
Shane
Yes I am still alive and I still have my thyroid. Things are still going well and fighting the cancer naturally……
Kathy
Hi Shane, I would be very interested to know what you are doing for treatment. I also have been diagnosed with papillary thyroid cancer, and DO NOT want the surgery. Please reply! Thank you
Shane
Hi Kathy, I would tell you first of all that nothing is certain with what I am doing and I have been trying just about everything that seems to be effective for others that I have read about. I switched to mostly organic produce and started juicing on a regular bases or basis :). I also have been trying to detoxify my body in every way that I can think of whether it has been through exercise or other natural routes. You will find some good info through the Gerson Institute online. Just keep researching ways to fight off the cancer online through trusted resources as my belief that it is possible to heal our bodies by eliminating the bad stuff and providing an overwhelming amount of nutrition will give the body a fighting chance. Also look into what the Thyroid needs including Selenium and other supplements. If things change and the cancer starts to grow then I will consider the surgery, but I don’t see that happening at this point.
Uku
As a PTC patient let me just say this, you sir, are an idiot.
Lisa S.
Jennifer, sorry you are going through this. It is disconcerting not to know and then be surprised by a cancer diagnosis later. With follicular cells, I was told they often don’t know until final pathology. My left side was indeterminate, and we didn’t know until 4 days after surgery that it was thyroid cancer. I was scheduled 4 days after that for the remaining lobe to be taken, I was hoping to keep it. It tested benign but was giving me trouble with swallowing, hoarseness and had a larger lump. For the FNA, the doctor had poked the benign nodule only – but there were cancerous multi-focal nodules also, plus it was in the margins. If your doctor and pathology indicate that you can keep the remaining side – it may or may not function well. I was on no meds prior to my surgeries and labs were “normal”, however I had began to feel hypo in the year leading up to my check up. I was afraid to have my thyroid out as I didn’t want to take meds all my life. After my first lobe was taken out, I opted out of meds to “see”, but I felt like a dead battery. That remaining lobe wasn’t working anyway and had to come out. After it was removed, my voice issues and swallowing problems/pain went away. I started to heal and actually felt much better! I even lost a few lbs. Levothyroxine worked short-term but after RAI, I felt very hypo and wasn’t converting the T4 only meds well. My liver enzymes were elevated and I felt foggy, achy and out of steam. My new Endo switched me to Nature-throid per my request. NDT has been the best thing. I’m living life again! I hope my story helps. We can insist on complete thyroid labs and realize that we have different options for thyroid hormone replacement. Best wishes!
MYRA WHITE
It’s been over a year now since this person wrote this, I am wondering how they are doing now?
Jennifer Ponce
My name is Jennifer
I recently had a right side Thyroidectomy because of a lump that had grew. I knew I had this lump since 2006 because a US Tech had scanned me just for fun and we found this. At that point it was around 2cmm, it never bothered me and I never had issues with my thyroid levels Next step was for me to have an official US which showed the nodule at a size of 3.2Cmm . At this point we than need to have biopsy which I had done, at a hospital and showed possible follicular cells. My next step was to remove the right side of my thyroid which I just had done. I knew going into the surgery that I might have to have a total thyroidectomy if the pathologist saw cancer cells . Great News when I woke up the surgeon told me that I had no cancer everything was negative . When I returned to his office four days later he still told me that everything was good but that the pathologist had seen something very minimal so minimal that I should not be concern but he was sending off to get reviewed. Second appointment surgeon was removing my stitches, he than proceeded to tell me he had bad news, the pathologist who read my slides changed his diagnosis due to the findings that came back from the clinic. He was really upset about this and called it a botched diagnosis. He said I am sending you off to the University of Chicago because If you were my family member this is something I would want done. I just saw the oncologist surgeon and he is telling me I need to have the second surgery Total Thyroidectomy. I am really not sure this is something I want to do I am not ready to be on medication the rest of my life, and because of my spiritual beliefs I believe that doctors to not have the final word. This may sound stupid/silly to some people but I would like to hear from people( if their is any) who opted out of the total Thyroidectomy.
Mindy B
Hi Jennifer!
I’m sorry you recieved such terrible news, especially after being led to believe that there was nothing to worry about. There are a couple questions that might be good to ask (and the more opinions you can get from doctors who are not affiliated with each other, the better). First, has the extracted tissue been destroyed? If it has not, you might be able to request that the tissue be examined by another lab. Second, was there a complete encapsulation of the cancerous cells? If the cells were encapsulated, the doctors should have no problem agreeing to monitor your remaining thyroid tissue on an annual or semi-annual basis. I’m not sure if they could tell you, but if there were unencapsulated cancerous cells near the isthmus (center part connecting the right and left lobe), that would be a good indicator for the need of a total thyroidectomy. Don’t let yourself be pushed into any decision- this is your life, and they don’t live it. You can always opt to just monitor the thyroid and decide to have the rest removed at any point. Same with radioactive iodine- you can always opt for it down the road.
A surprising number of people have used alternative therapies to heal their thyroid cancer. Some of these include Dr. Brownstein’s high dose Lugol’s iodine (there is evidence that iodine deficiency contributes to thyroid cancer), NORI Protocol diet, Vitamin B-17 (laetrile), and cbd oil. People have healed many types of cancer with Gerson Therapy. There are others, but I’m not familiar with them. These healing methods take time- sometimes 3 or more years, but to many people the time is a fair exchange for getting to keep their body parts and avoid lifelong dependency on drugs. Again, at any point you can always opt for the thyroidectomy. For other people, the peace of mind from quickly removing the thyroid is priceless and worth every trip to the pharmacy. No matter which path(s) you choose, remember that there are great groups of people who will share their experiences, research, commiserate, and help you navigate this journey. As for myself, I have a cancerous nodule that is 1.5 centimeters. I’m on the iodine protocol and eating a very clean diet (AIP) and have had tremendous improvement in my overall health, and the nodule seems smaller as it no longer ‘catches’ when I swallow. My favorite books are of course the STTM books, “‘Iodine, Why You Need It, Why You Can’t Live Without It’ by Dr. David Brownstein, and ‘World Without Cancer’ by G. Edward Griffin. The facebook groups ‘FTPO Thyca’ and ‘Iodine’ have many people who have had thyroidectomies and many who have healed (or are currently healing) using an alternative method and they are wonderful resources. Best of luck to you!
louis
God is always the best answer but sometimes he uses others to help us ,that something you just have to pray about.I resently had sugery to remove half my thyroid,after a biopsy i ws informed there was less than 2% chance it was cancer and another test came back less than 2% that it would ever develope into cancer.I must say i really wasnt feeling to concerned before and after diaognosis.1 week after surgery i was told it was cancer but not aggressive.of course i was told even if we had to take the whole thing out we could take that 1 little pill . Now i am concerned because nothing is ever what it seems,my concern is seen by everyone around me no matter how i try to conceal it.i never thought there would be so much sycologecal effect involved.I now will go to my god and pray to him for peace and my familys as well,I shall pray for you every night and hope you can find some time for a prayer for me,he is the only one that knows the truth for us and will protect us.Amen Louie
Mary
It’s as if you should feel guilty for being apprehensive, scared and angry for having cancer because others have it worse. My mom and cousin were my best advocates. Others made me feel like I was wimpy. I had a nervous breakdown after the surgery because of the hormonal upheaval., which nobody warns you about. The synthroid dose was very high which caused bad bouts of anxiety. I get totally pissed off because my cancer spread to my lymph nodes, and I had stage 3 papillary. With a high dose of radioactive iodine, I fear a metastasis in the future. Nobody gets it just because I didn’t have a cancer that killed me. The insensitivity of some loved ones was terrible. My aunt who was undergoing chemotherapy at the time, was very kind. Another Aunt, who smokes like a chimney and is blessed with good health, told me it was nothing. You can tell who isn’t worth your time after going through this.
Lisa S.
Amy – for one thing, Thyca is rare – have you had a scan showing hot or cold nodules, an US and FNA? If you do join the Thyca “club” – knowledge is power. It is usually treatable and slower growing. I am not trying to minimize your concerns as I was diagnosed in September of 2014 with 2 surgeries and RAI. As far as your weight and metabolism, the key is being optimal on our replacement meds. This is necessary with all hypothyroidism situations. Levo didn’t work out for me. I feel better on NDT (natural desiccated thyroid) with all the hormones – than I did the year leading up to my TT. When we are getting complete replacement, we can function and live life much better as we get optimal. Learning all we can about vitamins and supplements, life style, etc. is important with or without thyroid issues. Sorry about your situation with working a lot and your husband being away. In the FTPO groups we are always glad to help and offer support with thyroid/health questions. Best wishes!
Amy
Just started the process of ruling out the thyroid cancer today. The endo I saw ordered stat labs, and ultrasound, I go over the results with him next week. He was very upset that my pmd kept informing me I had cancer and did no testing other than referring me to him. He has some concerns that I was misdiagnosed and treated for all of these years and we have started the testing process. After he reviews the Ultrasound and Labs we will go forward with a PET scan or FNA or just removal. Looking hopeful at this time.
Lisa S.
That’s a step in the right direction, Amy – you deserve and need to know what is going on so you can have peace of mind, or have action taken if you do show signs of Thyca. That’s terrible that you have had that kind of communication with your other Dr., glad you are getting the testing now. Hopefully things will go well for you with your diagnostic labs and ultrasound, etc. Keep us posted.
Joi
Amy, I pray that your appointment today goes well. I do not have hashi’s, however I did have papillary thyroid cancer. I had my thyroid out in 2005. I am also struggling right now. Please Lord be right beside Amy as she see’s her doctor today.
Amy
Hi all, I was diagnosed with hashimoto’s thyroid 10 years ago, at the time they gave me medication to slow my heart rate and kill off the part of the thyroid that was overacting. 6 years ago I was told that my thyroid was completely dead. I have had in the first five years one adjustment on my synthroid then we moved and my thyroid is producing it’s own hormones. After every lab test my Doctor calls me up and asks if I’m the one she thinks has thyroid cancer. Finally after fighting I’m seeing an endocrinologist for the first time in three years tomorrow to find out what they think. I’m terrified it’ll be cancer. I’m already overweight and have trouble losing weight since it died six years ago, I work full time and my husband is out of country. Just really nervous.
Jamie
I’m so sorry you are struggling with this illness. I hope your appointment goes well tomorrow.
Adriana
I am so glad you areally not giving up. I am 11 years post cancer, and although things are not perfect, my life is much much better. You have this group for support and knowledge. My diagnosis took over 13 years and many many doctors. Even if you have cancer, you can recover, and most importantly have a normal life expectancy. You have this group which I only just found and already my life is changing for the better! Hang in there, many of us have been in similar shoes and are now living productive, joyful lives.
Sue
Hope your appointment gives you some answers. Whatever the outcome at least you will know and, from the FB pages, you will get support from all of us. We’ve all gone, or going, through similar if not the same insecurities and problems. Hang in there. Xx
Amy
Just got a call from the Doctor’s office that the doctor is out of town and won’t be back until the day I go back to work so they delayed this appointment another week. Feeling a bit frustrated.
Joi
I am so sorry to hear that your appointment was rescheduled. Do you have a way of talking with your husband through the internet? iIf so, this will be a good opportunity to set up a meeting so that your husband can be in on the discussion. <
Joi
I pray this doesn’t get to you too late. Would you be able to use “face time” or something similar with your husband so he can be “in on” your discussion with your doctor? I pray everything goes well.
Kathy Smith
I agree about the comments that it’s an easy cancer. For me it wasn’t, at 40 had papillary thyroid cancer, they removed the left side thyroid and the tumor. Two years later another tumor grew in the tissue left so now it’s moved beyond the Thyroid so prognosis is not as promising. A note to the last comment regarding it’s better than other cancers, Thyroid Cancer like many cancers starts there and spreads and other cancers become secondary to it so it’s not necessarily an easy cancer as secondary could be lung cancer, brain cancer, bone cancer and so much more. It needs to be taken seriously as any. Blessings to all.
Lois Rodger
I disagree. I have thryroid cancer. My father has lymphoma. I would take thyroid cancer any day of the week.
I’ve had multiple surgeries to remove the cancer (shoulder, neck, collar bone, sternum), but I haven’t had to have chemotherapy. I’ve done radioactive iodine twice. The cancer has spread to my lungs and I’m told I’ll deal with it for the rest of my life. So I think my opinion has to count. Of course it’s terrible, but every cancer is different and has a different effect on people. Thyroid cancer is “better” because the survival rate is very high. Most thyroid cancers are slow growing and easy to eliminate. You can live longer with thyroid cancer than most other cancers. They aren’t trying to minimize what you’re going through – but help you understand you’re going to survive this. You won’t go back to normal, but you’ll still be able to have a decent quality of life.
Lisa J.
Lois, I understand what you’re saying, but what I think people mean is they feel dismissed. My husband has Stage IVa at 56 years old. 32 lymph nodes were removed, and 16 were positive. I look up prognosis and I find anywhere from 51% to 86% survival in 5 years. My best friend, almost the same day as my husband, was diagnosed with a very aggressive form of lymphoma (Burkitt’s – known as “the fastest growing tumor on earth”). She went through 6 grueling in-patient stays for chemo (4-6 days each). She lost her hair, eyelashes, eyebrows. But she was just declared cancer-free. The chemo is a very effective cure. My husband’s TC will most certainly come back, question is whether in 6 months or 6 years. He is scared, and there is nothing I can say to assure him. I try to tell him it’s over, but we won’t really know until December when he has his 1 year scan. His TG level was over 50. I am scared.
Mary
I have had thyroid cancer for at least 16 years. I am on my 3rd recurrence. It is in my lungs and I have to have a PET/CT scan, a brain MRI, and a neck ultrasound to see if any of them have grown or have gone elsewhere in my body. I had a lung biopsy to prove whether the 30+ nodules in my lungs were malignant. They did 2 wedge resections and found that 3 of the 4 were malignant with papillary thyroid cancer. To all of those that say we have the “good” cancer all I say is if it’s that good, then you get it and see. I find them offensive for even saying any cancer is “good”. That and the people saying it are oxymoron’s and need to bury their heads back into the sand where they belong.
Mary Knight
My son aged 41 was diagnosed with the ” good cancer” or “this is the best cancer to have” in November 2013, I remember the consultant telling us that this is the best cancer to have and that it is contained in the thyroid. This is so untrue. My son had a partial Thyroidectomy at first and then after diagnosis of Hurtle Cell Carcinoma (anyone heard of that?) a full thyroidectomy and RAI treatment. Now in Nivember 2015
he was diagnosed with secondary lung cancer and possibly liver cancer. What a shock for us all! He has just undergone his second RAI treatment. What happens now? We are awaiting the result of the uptake
scan. The false idea that this is a good cancer is totally wrong. We are all devastated at his illness and how quickly it has happened.
Barb Phillip
Mary, How is your son doing now? So sorry to hear that he has had to go through so much. I am going for a second biopsy of my thyroid and without the biopsy and with only my ultrasound results they have told me that I have papillary Cancer. Working in the health care field I often see worst cases so my fear is spreading. I love that saying “it is the best cancer to have” because I feel like no cancer is the best kind to have. The stress in the process and the waiting to get results and figuring out a game plan is very frustrating. I was given the option of another biopsy or having half my thyroid removed. I went with the removal but the specialist wants to wait. Meanwhile speaking to a doctor that I work with his friend is going through what your son has gone through and he suggested that I push for the removal of half my thyroid . I have booked another appointment to discuss my options and opinions further for Monday. I may not know your son but I am thinking of him!
Esakki
I’m 25 years..I affected thyroid cancer now removed.. Is this possible for marriage..I very worried about my future.
Janie Bowthorpe
Esakki, not having a thyroid doesn’t effect the ability to get married. 🙂 Hopefully, you are now on desiccated thyroid instead of Synthroid, or even on T3 with T4.
Linda
I was diagnosed with papillary cancer in 1992 @ 25 years of age. Partial thyroidectomy and synthroid. Also told, best cancer to have. My life has been in shambles ever since. I’m in so much pain from fingers, shoulders, hips, knees and excrutiating feet. I have major depressive disorder, beyond brain fog no longer focus to work, severet hair loss etc. I live in Chicago where I should have access to great care, but nobody is willing to listen or dig deeper. This “easy” cancer continues to ruin my life, my marriage and my children’s lives. They have had a mother for their entire lives who has been in so much pain and with that comes severe moodiness. They should NEVER have been subjected to that. I am certainly not the person I would have been if I was treated properly. Some other cancers deemed more serious have treatments without the life long side effects. Any recommendations for a doctor . Chicagoland? I live on the northwest side. Thanks
Janet
I had a TT 2 months ago. I insisted on getting a referral to a Radiation Oncologist to get their opinion because everyone was spouting the same nonsense, this cancer is “no big deal”, “easy to cure”, it’s “just thyroid cancer”. The Oncologist informed me I have a more aggressive type of cancer that can be resistant to take up the RAI treatment so she is suggesting I get radiation treatments for 6-8 weeks after the RAI. My Endocrinologist is pissed that I even went to talk to an Oncologist. I believe the comment was something like “why would you do that? It’s only thyroid cancer. There’s no need to get an Oncologist involved.” Her plan is for me to take that “one little pill” and poof! All better. I think I’m going to stick with the Oncologist’s plan. As far as others saying I’m lucky because it could be breast cancer or some other “real” cancer, that is ridiculous! Cancer is cancer! No one goes up to a breast cancer patient and says “You’re lucky. It could be a brain tumor or pancreatic cancer.”! No matter what kind of cancer you have there are always others out there that have it worse off than you. It just seems like we’re the only ones having that shoved in our face. Like we don’t have a right to call ourselves cancer patients, or have the same fears/emotions/reactions that others with “real” cancer are encouraged to have. It’s not a competition to see who has the biggest, baddest cancer people. We just don’t want to be pushed to the side and expected to shrug it off like nothing.
Christine
I’m looking at having my thyroid removed as I have atleast one hot nodule with hyperthyroid symptoms and horrendenous thyroid pain after iodine supplementation with companion nutrients. I do not believe iodine caused the problem. I believe I have had the nodules for a VERY long time and didn’t know it. When I did iodine a nodule or nodules went hot. Been told by Stephanie Bouist and Dr. Brownsteins book that the only option is to remove the hot nodules. After four months of trying to heal it on my own, I agree! I have alteast four nodules and so many little ones they are too numerous to count. Can’t take the thyroid pain anymore especially when docs don’t want to give out medication. Five doctors can’t figure out why I have pain. Will know RAI scan results Monday and meet with a surgeon Tuesday. The question is…. I have an NIS symporter defect according to Doctor Flechas. I have a history of fibroids and ovarian cysts too, I want to also take Armour once my thyroid is out or atleast transition to it if they don’t initially give it to me. Does anyone know of a resource on how to begin incorporating iodine (along with Flechas protocol to fix NIS Symporter) along with Armour???
Thank you so very much. I’ve been suffering so long…
Christine
Mary Bode
I have Medullary Carcinoma Thyroid cancer . I am having surgery on Monday to have my thyroid removed and both nodules removed . If anyone could give me advice or anything please help ! I know that this is going to be a long road ahead of me . This is very un expected but I guess cancer always is. I will have battle scars with this but I plan to win the battle ! I know it is going to be hard 🙁 Please give me any advice you can . Scared …………………………………. but strong at the same time.
Janie Bowthorpe
Mary, sorry you have thyroid cancer. The most important thing to learn after surgery is to fight for Natural Desiccated Thyroid, NOT Synthroid or any other T4-only med. https://stopthethyroidmadness.com/natural-thyroid-101
lina
Jane, can you please tell me which book is more appropriate for myself and my son? I recently found out i have hashimoto but have been hypothyroid for 30 years and have been on synthroid for 30 years…my son had thyroid cancer and no longer has his thyroid. It’s been almost 2 years since his surgery and He’s still in the process of having his synthroid adjusted..it’s already up to .2 and his tsh is over 5. I dont’ want him to experience all of the side effects i have due to prolonged use of synthroid so i am researching an alternative for him. Which book would you recommend?
Alicia Bailey
Just passed my 18th year. and it has definitely been no walk in the park. I noticed a painful spot on thyroid when first child was 6 mths old. She’d slammed her head back into my neck n the EnT said it was a hematoma n nothing to worry about. A couple months into the second pregnancy @1.5 years later, I had more nodules then the doctor again said its nothing to worry about and canceled the biopsy. 2nd daughter was born with only some persistent vascular issues which show on her leg. A few months later after losing baby weight, I noticed many many more neck nodules so I went back to the ENT who against me that it’s nothing to worry about . when my second child was 10 months old I went to another doctor for another issue, but he immediately took one look at my neck nodules and scheduled me for a biopsy within the week. At first I was told that I had papillary cancer and that it was treatable. In a couple of hours the surgeon returned to tell me that it was made you lyrics I rode can’t hear, and that there was no treatment available and I had possibly 5 to 10 years to live.
After a total thyroidectomy, my oncologist insisted that I did not need hormone replacement for at least a month. obviously didn’t realize that I had probably had a nearly dead so I reward for at least several years, with Colin how bad of a time I had even with my first pregnancy and barely being able to stay awake for a walk, due to swollen dry cracked feet, pulling my hair out in clumps, strange heat flashes flaring up anywhere and everywhere all over my body, etc. Not until about the 5th time that I had complained about joint pain and fatigue, and hair loss among other things, did the nurse at the oncologist office write in my notes that “…patient insist on 24 hour urine analysis for TSH”. The odd thing is, just before this happens, a stranger drove into my driveway by mistake, took one look at me and asked when I had had my thyroid surgery from noticing my very slight scar, and I told her about issues I was experiencing, and she advised me that I needed to have my thyroid levels checked because I was lacking hormones. The insurance would not cover the test since I had been the one to insist on it, but lo and behold, my TSH came back at around 50. Of course, no apologies from the doctors office or the nurse but I was immediately placed on Synthroid.
I didn’t went to see an endocrinologist, who I really like because he takes the time to listen and he will put down his computer and he will talk with me off the record of the other issues that I have been experiencing. however, he is in numbers person and believes that if TSH is ” in range ” then I’m fine. My problem with this is that he keeps my TSH around 0. 05 and MTC patients are not supposed to be needing suppression, and such a high synthroid dosage can lead to problems. He always says better safe than sorry. Then after 17 years on a high dose of synthroid, last September my TSH came back at about 20. That was the first time it has gone up in all those years, but I have been complaining to the Center for knowledge is for a very long time that I just didn’t feel right, that I was so tired I could hardly wake up, my hair was falling out my skin was dry, I was having severe depression and anxiety in part due to a five+ ongoing divorce, and on and on.
After many times trying, I finally took him some excerpts from the STTM book no he sort of chuckled and didn’t pay much attention to it, saying you can’t believe everything you read. Nonetheless, I explained that all these years on the high dose of t4 only was probably causing my problems. Once again I asked if he would please let me try and natural hormones. To my surprise, and probably do more to the high TSH level than anything else, he readily agreed. I asked about the different kinds of natural thyroid replacement but he would only prescribe are more thyroid, saying that there was more information available on it, so, I started Armour Thyroid last October. Unfortunately, I still don’t feel really good. I am better in some respects, as I don’t fall asleep every few minutes during the day, at least not always, and my hair isn’t falling out. But, I think that it is causing me some problems and I have asked him to write me a script so I can go to the lab and have my quarters all 24 hour level tested. he doesn’t see this is necessary, but instead the he would consider doing it.
I have read the book, Jared in fact, but I would like someone else’s opinion who may have been in the same situation. My issue right now is that I can hardly ever wake up. I have to say about 20 alarms and unless I have been asleep at least 10 hours or so I never hear them. I used to sleep 12 to 15 or more hours but that of course includes getting up several times a night because MTC causes a lot of diarrhea so I wasn’t sleeping very well anyway, I sometimes wake up and the alarms have been going off for more than 2 hours. yet I still have no energy to get out of the bed and do anything. When I do forced myself up, I only feel better after taking my other meds –tincture of opium every 4 hrs for diarrhea (20+x/day and 6+ x/night w/o that), hydromorphone every 4 hrs for the pain from extensive bone mets (head to toe), and xanax am/pm for the severe depression and anxiety. I get a bit more energy as the day goes on, but if I skip these meds I get extremely agitated & spend the day in the bathroom and/or falling asleep. Sometimes I get up, and before I even taken the medicines I get a cup of coffee and 3 hours later find that I had fallen back asleep, yet I’m still exhausted. By the time it gets to be a normal person’s bedtime, I’m usually just feeling like I’ve gotten a second wind and only then do I feel like doing anything… So then I find hard to settle down and even try to go back to sleep. Consequently my days and nights are almost always totally turned around.
My MTC was tested as being sporadic, and they did not see any adrenal tumors at the time, nor did the scans that I had at John Hopkins in 2009. The only other CT I have had since then was an abdominal CT in 2011 to check liver mets and nothing was mentioned about adrenal issues, but of course they weren’t looking for that. For those of you who have experienced this issue, I was wondering if you thought it sounded like an adrenal problem? I feel like I am totally backwards and that my cortisol levels are totally backwards to where they are higher at night time and lowest in the morning ( or afternoon) whenever I wake up.
As I said in the beginning, it’s certainly been no walk in the park. In addition to living with in trying to manage this good cancer, the reason I had to move out of my home, was that my ex narcissist of a husband could not handle being any kind of care taker, never once expressed caring or concern, and was actually for many years, causing a lot of my pain and problems by adding things to my food & drinks to hasten my demise, and knew that he could always blame it on the cancer. For many years I I was naive, & I tried to deny that anything was really happening in that regard, & I never had any camera in the house, but he did, so I cannot prove this. However, I just had some kind of intuition that told me I should move out when I did, and I now know, in hindsight, that I was a hundred percent correct and I probably would not be here if I had not left. Unfortunately, each of my three rentals in the past 5 years have been accessed while I have been away, and on several occasions when I have returned home and drank the coffee I had left or eaten something in particular, I become violently ill within 10-15 minutes and/or experience severe muscle spasms and shooting nerve pains (various bodily areas) that are debilitating and painful to the point that I am in tears. This is the same kind of severe pain that I was experiencing 24 hours a day before I moved out. Call the oncologist of course thanks just imagining this and he is convinced that I must have had tumors that were pressing on the spine so he sent me for three MRIs a couple weeks ago. I told him that would be wasteful because the was not occurring at that time and the MRI would therefore not show any pinched nerve or muscle spasms causing any nerve pain. MRI was not going to show any nerve involvement if the episode was not happening at the time. As I expected, the report came back indicating No nerve involvement relatedto spinal tumors, with only one area showing a slight flattening of the spinal column and some stenosis along with degenerative disc disease and a few herniated discs. So the only thing I received from those was yet another big fat medical bill.
And as we all are aware, the financially devastating big fat medical bills – arising out of test after test that provide no conclusive answers and no real solutions– are just one of the lovely issues that we (& most cancer patients) are so “lucky and priviledged” to have to deal with, since we have this “good cancer”, which is such a “walk in the park”!
Jaron du Preez
I was diagnosed with testicular cancer five years ago but because of the chemotherapy it messed up my thyroid! Was misdiagnosed on countless occasions which was when I discovered the STTM website. After many doctor’s and hospital visits I was eventually diagnosed with Graves Disease (mostly because I insisted that I had graves disease and asked the doctor to draw blood!). I also purchased the two books and it has been crucial in not only my own health but I passed it on to family and friends as well! I studied Elaine Moore’s website and purchased a few books about Graves BUT to be honest up until now I haven’t been able to get it under control (it has a tendency to wax and wane) which makes your life miserable (Graves Eye Disease is very unpleasant!). I am now seriously considering getting a total thyroidectomy (NOT RAI). Are there anybody on this blog/site who had graves disease who had a similar procedure done? Is whole thyroid (NDT) the way to go after this procedure? I note some debate about NDT vs T4/T3 combinations. Both have good arguments. Some proponents of the T4/T3 combination say its easier to control the thyroid hormones? I am a bit at a loss as to what to believe since NDT has other beneficial hormones like T1, T2 and calcitonen but I assume that T3 levels can go to high on NDT because of the 80/20 split? Since I am considering the thyroid removal I would like to get my facts straight as far as possible before I start hormone replacement treatment. To relate to this article. I am sure thyroid cancer is NOT an easy cancer since I had testicular cancer! Any cancer that messes with your hormones makes you feel miserable! Chemo, radiation or RAI’s is NEVER a walk in the park! I have yet to meet a doctor/oncologist that has been on “his own medication/chemo/radiation” and still proclaim its a breeze!
Lesley Kuck
At 48 years old and losing hair, feeling fatigued, horrible aches and pains that felt like arthritis, I went to an endo and was told I had a nodule. Ultrasound, FSA and further genetic testing (which my insurance wont pay for, as they deemed it “medically necessary”) I have just been told I have cancer and they want to remove my thyroid. I am reeling from this news and of course, the first thing out of everyone’s mouth is “You’re lucky! It’s the ‘good cancer’, you’ll be fine.” I want to scream in the streets ” CANCER is CANCER!” I need an endo willing to explore NDT as the one I saw scoffed at it and said anyone that prescribes it is a quack. I live in Thousand Oaks, CA… Anyone know a good surgeon and endo?
Laura Baarson
Hi I just came from a Dr.’s appt. with hopes of walking out with a prescription for NDT. But she refused because when they took out my tennis ball size thyroid they found an encapsulated bit of cancer.. arrrrgh, I want to cry! Why do they feel this way and how do I convince her otherwise. Please.. she’s willing to send me for diagnosis of MS, Fibromyalgia. Chronic Pain and Fatigue Syndromes, but I just want NDT!
debb
So good to read this, wish I’d seen it when I was going through treatment. You mention the fact that there is no public support to raise funds or awareness because people mistakenly believe Thyroid Cancer and related issues are almost inconsequential and this is detrimental but not nearly as painful as the almost total lack of compassion and support of those closest to us. But everything they see and hear indicates that Thyroid cancer and treatment are on the scale of falling and scraping your knee. Just typing this brings tears to my eyes and I am 3 years past surgery and radioiodine treatment. I am doing fairly well, no thanks to the established medical community, seeking information and unorthodox treatments on my own (though I would not recommend taking the risks to others). I am still angry that there is so much information out there that is being ignored and so many people suffering both physically and emotionally. Treatment of endocrine disorders today is akin to treating depression and anxiety with lobotomies.
Michelle
I was told almost verbatim the same thing…that I was lucky to have thyroid cancer—personally, I think mine is from a hormonal imbalance caused by fertility meds! I was cancer free 3 months before going on them. Doctors are soooo quick to want to remove the thyroid instead of just the cancer! I have Hashimotos so I was turned down for the non surgical options. I was diagnosed with breast cancer at the same time, so no one even cares about the thyroid having cancer–the oncologist doesn’t even monitor it. It’s all crazy!
Deb Tucker
I had thyroid cancer 22 years ago. My entire thyroid was removed and I received radiation therapy afterward. I have tried various brands of thyroid medication. I continue to be exhausted, depressed, over weight, irritable, angry at times. I know there has got to be more than Synthroid for me to improve my quality of life. I am tired of being tired….I’m tired of being over weight. I read that T-3 is converted from T-4; then I read T-4 can not be converted to T-3. I don’t know what to believe. I would appreciate hep from anyone who has experienced how I have felt ….20 years is a long time to be this miserable. Thanks.
Janie Bowthorpe
Deb, one of the very reasons Stop the Thyroid Madness exists is because Natural Desiccated Thyroid has changed lives!! Get the revised STTM book. It will answer a LOT of your questions and soothe any doubts: http://www.laughinggrapepublishing.com
Kelly Underdown
I was diagnosed with papillary thyroid cancer in may 2007 At the age of 30. I too was told I was lucky. I don’t consider 2 surgeries and many RAI body scans lucky. I missed my son’s first steps due to my cancer. I used to feel I was not a survivor but after my last surgery to have have my lymph nodes removed. I proudly say that I am…. cancer is cancer no matter what.
melissa
Does anyone have a Dr. in NYC they would recommend that is familiar with Armour and Iodine Treatments for the Thyroid? I had surgery in Feb. where I had stage 1 thyroid cancer and would like to treat this naturally.
brooke
I just read this article while doing some online reading about various symptoms of ALL kinds of thyroid disease. I have had cancer, twice now. It was not thyroid, but after suffering through that, then a broken back, then broken neck, and lastly…cancer again, I understand this outrage. Oftentimes I have said that the absolute worst aspect of being sick or seriously injured several times was the response of the people you cared for most. It has ranged from, “You are so lucky…you could have been paralyzed!” to “You are so lucky you are still here and it isn’t worse.” to the all time worst of, “We’ve never seen you this way…” So so many times I have wanted to say, “Don’t you think it is time to help if you ‘have never seen me this way?!!” I have always been the one to have everything together. I’m a doctor who also did another doctorate specifically focused on cancer research and causes. Because I put myself through school and have led an independent life, it doesn’t occur that I may need help and support. Bravo to you for speaking up and speaking out to Jill, who is apparently unaware of her own disregard and social ineptness. Everything is perception based, and as an attorney she should know that better than anyone. Your perception is your reality, and I am here to say that this IS no walk in the park. To say all those things does not give someone perspective, yet it rather discounts emotions. That is one of the worst things someone can do, especially in such a serious scenario.
Brenda
13 years ago I was completely unaware I had Papillary Thyroid Cancer, level 3. I thought I had a serious cold. I was working 2 FT jobs using my voice and feeling very tired. I had to be transported to a Emergency department because I could not breathe. My Nuclear Medicine Dr. has kept me free of cancer, but yes I am tired and my voice has changed. I do have a metastasis . A Meningioma that is benign. A neurosurgeon is consulting on that. Does anybody else ache a lot ?
Kerry
I’m a breast cancer survivor (age 31 at diagnosis) with hashimotos. Sorry but thyroid cancer is the easy cancer. Except for in very rare cases, it never kills. I’m sorry you have to deal with poor health as a result but I know many young mothers that will never see their children grow up as a result of dying young that would happily trade places with you.
myrdies jackson
Im so glad i discovered this blog ! My thyroid cancer was diagnosed in 2007. Surgery and radiation treatments , countless scans , test etc has caused kidney damage as well as so many other health issues. Fast forward to last Friday i had a MRI ,CAT SCAN ,LEFT NECK BIOPSY after my doctor finally became concerned over lab work. I had been telling doc how i felt and the pain and obvious swelling in my neck !! Neoplasm suspected !!, REALLY !! I was not being heard and i didnt fight for my life. Now im angry with myself for saying ok , see ya next visit ! Now im facing ANOTHER neck disection and the cancer has spread to both lungs and the hytoid bone ! I am afraid because this has been an 8 year rollercoaster ride thru hell !! FIGHT FOR YOUR LIFE ! I HATE I WAITED SO LONG!!!
erica
WOW! Myrdies I am so sorry to hear your news. I too was diagnosed with thyroid cancer in 2007. I am afraid now because I too have been telling the doctors that I feel a swollen lymphnode in my neck. Did I fail to mention that I had several removed when they did my thyroidectomy because I was stage 4? I have NEVER felt healthy since 2007 when I learned I had cancer.This is a chronic uphill battle. NOT for the faint of heart.People who think this is easy can kiss my ass.I’d like to see those people walk a day in any of our shoes.
Stephanie
I received a bad batch of compounded NDT in January from Women’s International Pharmacy. Just now connecting the dots among my symptoms. I just took some frozen armour I have on hand for emergencies and I can tell the difference. I hope we are not in for another round of supply problems.
Audrey
Thanks for the great information. I have been battling thyroid problems for almost 40 years. I am on thyroid meds my doctors have raised the dosage one month then lowered it the next. I have told my doctor that it feels as if something is in my throat blocking my air way. I stay so tired and have to force myself to get up and clean house.
Gail
my surgeon could not even tell me I had cancer in person, I was told over the phone while I was in hospital- they discovered the cancer when they did the biopsy after removing it. Yes told it was a easy cancer. Slowly killing my health ever since 10 years.
Anna
I have Hashimoto’s thyroiditis. I now have a very swollen and painful lymph node on the left side of my neck. I have been taking antibiotics but see no improvement. I will be having an ultrasound in a few weeks. I have been stunned by family and friends who have said that very thing… Of all the cancers to have this is the one? Seriously? I’m staring down the barrel of a possible cancer diagnosis and I contunually hear from people who have never had cancer at all that it’s an “easy cancer” and the prognosis is good. I want to say to them… There are many types. If it spreads to the lymph nodes it’s a different “story”. Would you want to be isolated while taking a radioactive pills that makes you sick as a dog? How do you feel about having your neck slashed open? Don’t downplay it… you may have the best or intentions but you have no clue how terrifying any cancer possibility can be. And just because you know somebody who had it doesn’t mean the cancer is the same type I may have, the treatment will be the same, or the prognosis will be the same. I also have had to deal with friends and family saying they can’t handle it or are too busy to talk about it with me… For me not to worry and just pray. I would NEVER say that to them… EVER! It’s terrifying, hurtful, insensitive, and lacks compassion. Thank YOU for standing up and speaking out! I stand with you whether or not I am diagnosed with cancer… NO cancer is an easy cancer. And the effects change your life forever. As a single 40 year old woman… I am accustom to being independent, employed, and self sufficient. Suddenly, I’m released from my job for excessive sick days (all documented by doctors), not certain if I will have a job or insurance in the next few months or if I will even be able to work. Sure… That’s so easy! Easy for you to say when it’s not you. BRAVO!
Verna Hebert
Hey , Someone else knows what I’m talking about when I say how I feel !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! No I’m not lazy !!!! No I’m not just complaining,!!!! No I’m not trying to get attention !!!! No I’m not trying to make a big deal out of nothing !!!! No I can’t just ignore it !!!!!!!! Yes I do have to get up everyday !!!!!!!!
Manda Browning
In February of 2012, during my 14 week prenatal exam, my OB felt an unusual lump in my neck. After a biopsy that left my neck bruised and sore, they told me it was Papillary Thyroid Cancer. This crushed my world. My happy pregnancy was ruined. I was grouped with other patients who had ever had Thyroid Cancer, as well as being told it was extremely rare to have it while pregnant. Rare but common at the same time? I was told it was “the best cancer to have” and that the risk of it spreading before the baby was born was highly unlikely so we need not worry. How wrong they were! Two months after hearing that news, I visited a second doctor who determined with yet another biopsy that the cancer had metastasized to my lymph nodes. Yep, that easy peasy cancer that is super lazy was proving them all wrong. I had to choose, have the surgery at 28 weeks and risk my unborn baby or wait and risk the cancer spreading even more. How do you choose to put your child at risk for you to live? How do you choose to be around for the child who already knows you and possibly lose the one you are carrying? I chose to have the surgery. This meant having hormones injected into my hip three days straight just before my surgery, in hopes it would help the baby’s lungs mature and he would have a chance. My baby is a live and well, with not even a hiccup while I was undergoing my radical neck dissection. While in the hospital, my body started going into calcium shock due to the strain on my parathyroid. I am now hypocalcemic! A week later at my post op appointment the pathology report was back and determined the cancer was stage 4 but because of my age it was dropped down to 2B, the worst stage a woman of my age (26) could be diagnosed with.
October 2012 I was going in for my radioactive iodine pills, leaving my family and new born baby for a week, preparing to be sick and still trying to keep up with my college courses online. It wasn’t four months later they determined through yet another painful biopsy the cancer was back and spreading like wild fire through the remaining lymph nodes on the ride side of my neck! Easy cancer? I don’t think so! Another painful dissection and no lymph nodes on the right side of my neck, and ANOTHER radioactive iodine treatment leaving my mouth dry and my salivary glads swollen and infected. It will be three years in May since my first surgery, I still struggle with my levels and now my body has decided to stop absorbing nutrients. My white and red blood cell counts are dangerously low and it is as if I do not eat protein at all (I’m big on meats and potatoes so that’s impossible). Will the constant struggle ever go away? Will there be a day where I actually have the vivacious sexual appetite I used to have for my husband? Can I actually have the energy to play with my children at the park and go on hikes through the mountains of Montana without feeling like I’m about to pass out? One day these things may be possible, but for now it is a constant struggle and the thought of someone taking away my fight and my story is heart breaking. We all fight for our lives, hoping for one day to never worry about that nasty word (Cancer) again. When did putting others down for their difference in health problems become acceptable practice? I show the thyroid ribbon proudly every day in the side of my vehicle, and so does my husband.
Tina
I had my thyroid removed for papillary cancer last year….I wish I never had it removed. I would rather be dead than continue this journey of just lying in bed 24/7 and die slowly. I have 3 young boys.
John
I am trying to find a Endocrinologist that believes in natural healing Remedies maybe someone out there can recommend one or a site that may help. Below is a little about my journey so far.
I was diagnosed with Papillary Cancer on Dec. 10 2015, I was told by my Endocrinologist that day its the best one to get! I laughed at him he told me the complete thyroid had to come out now. I was scared so went to see two surgeons both said the same thing had to completely remove the Thyroid may need radiation but not sure till we get in there to see it. Both Surgeon said not a big rush due to being near the holidays I could wait to have surgery. So with that extra time i went to a local Naturalist and started his protocol. Last ultrasound shows Nodule getting smaller. I been working with a local MD that also believes in what I am doing but I would like to speak with a Thyroid specialist that can review what I am doing. Any help would be appreciated. Thanks John
V
Hi john, what protocol are you following if you don’t mind sharing? I was diagnosed with papillary thyroid cancer july 2015. I started working with a naturopathic dr but i don’t think he is as experienced as i would have hoped. Im taking hai zao which is an iodine supplement and incorporating frankincense essential oil into my daily routine but that’s it. I was scheduled for a lobectomy surgery this month but postponed it.(Because of the size my surgeon gave me a choice to have lobectomy or thyroidectomy.) The nodule hasn’t grown since it was discovered in 2014. Im 29 and im trying to do anything i can to not have surgery. I haven’t discussed any natural options with my drs because they are so focused on just taking it out, which makes my decision that much harder.
sai
Thank you for this article!this true!yup it is true that everyday is a struggle for us.having no thyroid gland change my life forever!that is why i am grateful for this article and thank you for speaking in behalf of all the cancer patients.You are all in my prayers!Godbless:)
Taryn Bloem
Thank you so much for writing this article. It did make me cry because it completely hits the nail on the head. I have follicular carcinoma (hurthle cell type) and had a TT two weeks ago. I am going in for my RAI treatment tomorrow. I have been told countless times over the past 3 weeks how lucky I am to have this specific cancer, but it doesn’t alleviate the stress of knowing whether or not the RAI treatment I will receive is going to work on the hurthle cells. All I can do is pray and live in the hope that God has His hand on me.
Thank you for being such an inspiration, and a true champion to the cause.
Doris Cook
I was diagnosed with Papilary Thyroid Cancer in 2010 at the age of 24. I had it removed and was told it was an “easy cancer.” Well that easy cancer has impacted every part of my life for the last 5 years. I am finally have a break from RAI body scans for the next two years. According to my doctor, if my husband and I are looking to expand our family, we should do it now. So now this cancer is affecting when I can expand my family. WTH?! I am currently taking Synthroid and almost every appointment has a dosage change. This is beyond frustrating. When I first moved here, I made an appointment with an oncologist and he basically said that he didn’t want to give me his time because I didn’t have to do treatment like radiation or chemo. At the time, I laughed it off but after thinking about it, it was very insulting.
Carolyn Wong Bowen
I had surgery to remove my left thyroid five days ago. Yesterday, I had a post-op with my surgeon and was told that it was malignant. By coincidence, I also had an appt with my endo dr later that day, armed with all the test results from my surgeon, my endo dr recited all the possible treatment that I will be going through. I am so grateful that I came across this website and already feel the support and understanding that I need to face this illness.
Kristina Sanchez
Thank you so much for this post!! I was just given the news yesterday and wasn’t sure what to expect. I have been dealing with thyroid issues for some time now thinking I was dealing with early menopause or it was just all in my head. This article opened my eyes and I now have a little bit of knowledge about what will happen after my thyroid is removed.
I can relate to the “You’re lucky” comment because that is exactly what my doctor said to me.
Esther Fair
“You’re lucky….of all the cancers there are, this is the one you want.” That’s what my consultant said when I was diagnosed on jan 12th this year. I’ve had surgery and am now awaiting my radiotherapy. Everything you have said above is exactly how I feel but no-one else seems to get it!
It’s so refreshing to know that I’m not along in the way I am thinking. My life completely changed this year and everyone else thinks it’s just about this “little pill”!
<3
Dandoon
I was diagnosed with a follicular thyroid cancer at 30y of age (last year) only got a hemithyroidectomy and apparently no need for radio or removal of other half as I was lucky and got it all out- need continued monitorin, my q is that I have an inflamed knee and all my blood tests are neg for any autoimmune diseases, my thyroid hormones (t4) is within range, but I don’t know why my knee is so swollen, steroid injection doesn’t do anything, nor do anti-inflammatorys. I’ve always been border line anaemic- so not sure where to take it from here- any help/suggestions?
Kathy Smith
Hi everyone! I am 65 years old, was diagnosed with bilateral benign nodules at 59. After the first doctor I saw told me of the nodules (and also told me I did not need a biopsy because 99% of the time they were benign!) I found another wonderful doctor who seems to take this more seriously! I have an ultra sound every six months, and an aspirate biopsy if anything has enlarged. So far so good, but now I’m wondering if this treatment is the best for me. My blood work always comes back within ‘normal range’, (except high calcium occasionally) I am not on any meds, but I am so tired all the time, have hair loss, and a few other symptoms. What would you suggest I do, second opinion? I don’t care ‘how curable’ this cancer is, it’s still cancer, and it scares you to know the possibility exists. Endo Docs need better training when it comes to discussing thyroid cancer! Thanks for all the good you do!
Chris
Hello Kathy,
You may want to be checked for hyperparathyroidism. High blood calcium is a definite red flag for this disease. The parathyroid glands (4) are separate from the thyroid and serve a different function. Here is a quote from a specialist, “However, it is extremely rare for people to have high calcium levels in their blood… and not have a parathyroid tumor. If you have high calcium in your blood, chances are extremely high you have hyperparathyroidism, unless your PTH is VERY LOW. Parathyroid disease, hyperparathyroidism, calcium, parathyroid calcium disease, parathyroid gland problem. Parathyroid problem and parathyroid disease.”
Further, “In diagnosis and diagnosing parathyroid disease and diagnostic testing of parathyroid disease, it is NORMAL for patients with hyperparathyroidism (parathyroid disease) to have calcium levels that are high one time it is checked, and normal the next time it is checked. ALL patients with hyperparathyroidism will have calcium levels that change from day to day, week to week, month to month. MOST patients with hyperparathyroidism have calcium levels that FLUCTUATE from high to slightly high, to high-normal. This does NOT mean that you don’t have the disease…you do, and this is how it affects most people.”
Check out parathyroid.com
B. Triplett
Dr. Norman treated my son for parathyroid disease! He is a wonderful doctor/endo. We lived in South Carolina and traveled to Florida to see him. Before going, we were on the phone with him discussing what we needed to do. Best doctor I have ever dealt with. By the way, my daughter was diagnosed at the age of 22 with thyroid cancer. We have been riding this roller coaster ever since! Now at 25, I just pray she will one day feel good again. Anemia and stomach issues have been a constant problem.
Dawn from Michigan
To Jill Gurfinkel
Thank you for writing this. I almost cried when I read it because it is SO TRUE. I had thyroid cancer at age 19 and was UNDER treated with synthetics for 23+ years which resulted in many of the symptoms & difficulties you mentioned. It took months of reading (Stop The Thyroid Cancer & Dr. Mark Starr’s book) along with much effort to get on track to a solution.
23+ years was a lot to lose and makes me deeply sympathetic with people who are put in prison for years for something they didn’t do. The lost years can never be reclaimed.
I thank God for for people like YOU who help explain the situation to others. Before the internet, people suffered in silence. The gateway is now open for thyroid cancer patients to share and get better.
I don’t know what I would have done without “you people” !!!!! Taking 1/3 of a dose for 23 years kept me alive but certainly not functioning on all 4 cylinders. If I wouldn’t have taken control of my own dosing a few years ago with information learned from sites like this, I would be bedridden at best but likely dead.
Thank you again for speaking out.
Corinne
You should check candida as this can cause some of the symptoms u describe, as candida can attack the thyroid as well. Hope this helps, diet is the key.
debra bush
I have thyroid problems bad. My dr. Put me on sthtyroid for it and i really dont think they are working. Plus i have diabetes too . I will know what he is going to put me on shots or pills. I am 49 years old and i feel like i am falling apart. I am still tired my heart races i am dizzy 24/7 my stomach hurts sometimes. I am fusterated. I need some one to help me.
Janie Bowthorpe
Debra, sorry to read what you are going through. 🙁 I think you need to order and thoroughly read the revised STTM book in addition to the website. It’s all the help you need to explain why Synthroid is not the way to go, what is the way to go, and how you need to check your adrenals: http://www.laughinggrapepublishing.com
kristy miles
i am scared! I have for years, now I read your Sttm page been suffering from Hashi’s! The last 2-3yrs I have been fighting ignorant WA Dr’s & waiting long wait lists in between for another in the hopes they know something about all this! Last 2 Dr’s have been Dr’s who support Naturopathic ways, the first diagnosed Hashi’s & nodes on my thyroid, said she wasnt worried as tests were in normal range & scooted me next door to the naturopath who decided I needed a diet. Onwards to a hormone clinic, she did more tests and pronounced low Progesterone, Dhea, High cholesterol (which she’d just stated/removed me from my 10yr meds I didnt need!) famial Herat disease/early death & No need to worry! Hormone replacement & High insulin resistance meds i am now on! Cholesterol we will look at in six months?!! I have now made my 10th appt with finally an Endo & I keep reading & i brain fog little, Im fatiguing easily, my family were all cancerous/deceased & they play games with our lives?. I hope to god he knows what Im supposed to have done for me because everyday Im reading more tests to add to the list I have to question him on!
Do you know No9 actually advised me I dont have a thyroid issue & definately not Hashi’s from the tests! Then I showed her my previous test results – again? And she was still not interested stating if she could control the other things she was sure I wouldnt need to discuss thyroid with her in six months time?!! OMG!!
Anne
Kirsty miles.. I am also in wa, southwest. Thyroid wa is a great source of drs they recommend.. I called a compounding pharmacy to ask who prescribes NDT. I found two doctors and even after telling her all my symptoms I’m still struggling 8 months later but I think she was hesitant to prescribe.. Blood tests just came back abnormal again so I have a case to change medication she did tell me there are options so fingers crossed this time she’ll prescribe what I need.. Her reason not to jump straight to NDT was the cost.. But now I am willing to pay what ever to feel well
Amy Cork
I have been through a very similar experience. I have been going to my PCP for almost 3 years with extreme fatigue, brain fog, weight loss, weight gain, skin rashes, swollen joints… I was given Zoloft and Clonazepam. I was told I was depressed, although I argued I didn’t feel depressed. I kept saying every visit I thought it was my thyroid and my dad and sister have Hashimoto’s. It was written off with “your TSH is normal high”. This went on until October of this year, when my hair started falling out in clumps. I called and demanded my PCP give me a referral to an Endo. The nurse very rudely told me I probably would not get in but she would send over my records. I got in right away. My thyroid (which was never felt by my PCP) was enlarged 3 times the normal size. He sent me for an ultrasound right then and for a complete thyroid panel. US showed Hashimoto’s and a 1.4cm nodule. He sent me a week later for an FNA. I have papillary thyroid cancer. Surgery will be Dec 22nd. Trust yourself and your body!! I wished I would of demanded sooner. Best wishes!!
Carol cork
Hi Amy I just wanted to get in touch as you are in cork & I had my Thyroid removed in September 2015 & just out of hospital after radioactive iodine. Very little support or info so if you need anything get in touch.
Ger
Had thyroid cancer
Surgery 2013 followed by r a I in Cork
Little support but good outcome
Contact me if u need
.Carol
Hi Ger.
Just wondering how long it took you to feel ‘Normal’ again.I’m still exhausted & my Dr keeps changing the dose of my tablets. Thanks
Janie Bowthorpe
Carol, by how you stated that, it sounds like you have been put on the inadequate levothyroxine or Synthroid, and that alone is why you aren’t feeling well. Check this out: https://stopthethyroidmadness.com/t4-only-meds-dont-work Your doctor is also dosing you by the TSH, which also doesn’t work. Read this: https://stopthethyroidmadness.com/tsh-why-its-useless
Yes, it’s a lot of reading, but you have to become informed to get well! We are light years ahead of doctors like this. 🙂
Karen
Except for it was my mom and she has Graves, our stories are identical. 3 years of saying I think it’s my thyroid…finally pushing hard enough to get heard! …and cancer.
Julie buckel
I had hashimotos for about 4years which was just watched because tsh tests looked normal. It turned into thyroid cancer. After 12 years it has been a struggle just to maintain any energy level. I feel that my hashimotos and cancer were caused by wheat and gluten intolerance. My GP suggested it and when tested I have the genetic marker for it. At the time I found out I had cancer I had already stopped eating wheat and gluten to solve tummy aches with rumbling gas. (No fun in college) so when curious to prove what wheat and gluten issue I do have I refused as it requires me to consume it so my biopsy can read my bodies reaction. I also have recently learned that a lack of progesterone can cause hypothyroid issues and I know I have that in my family. The things that have been the hardest have been the anxiety that has made it necessary to change my career and steals your joy and interferes with your relationships, the weight gain and the fatigue. I power through it but would love to just effortlessly do the things I danced my way through before. I also blame my 200 mcg a day pill for making me need a knee replacement as a side effect is knee pain. The replacement didn’t heal correctly so lots of pain and immobility 10 years later. The same clinic did both procedures. My endo had told me that I would have more cortisol running through my veins because of medication but I hadn’t realized how negatively that would effect healing. I am on higher amounts of t4 only med because my treatment did not include radioactive treatment to get rid of tissue left in thyroid. Not sure if that’s good or bad at this point.
Paula
Thank you for your site and blog, Jane. This comment is regarding your blog on the change in ERFA formulation. I have not been on your site in a while and missed the notification last May that folks had noticed a return of symptoms on ERFA.. I had been on original ERFA for a few years, off armour, and felt much better. I started using my recently filled ERFA prescription (first time not directly from ERFA) , maybe a month ago. About two weeks ago, I noticed I had to get prone by 1:00 in the afternoon or I would practically decompensate – extreme weakness, inability to cope with anything,loss of appetite, etc. I thought I was having a possible relapse of CFS, which I have never had, but it has been a stressful year. I use a pendulum to test my medications, homeopathic remedies, etc. After hearing myself tell a friend , “I feel like I did when I tried to get off thyroid medication a few year ago”, I decided maybe I had better test my thyroid med. It tested a definite “NO”. I had some of my older ERFA left and it tested yes. I have taken it for a couple of days now and yesterday I noticed that I was suddenly feeling more creative again – and had not needed to lie down or fall down 🙂
I am not sure from the blog, what folks are turning to, to replace the ERFA. I only have about 15 tablets left and am wondering what to do next. Thank you so much for all that you do.
Joann Hansen
hi I was diagnosed 2 days before thanksgiving in 2005. I was also 4 1/2 months pregnant with my now 8 year old daughter. I was told do you want to continue with the pregnancy? Of course I did, why would they ask me that? My baby was born 6 weeks early and perfect, me I had my surgery 6 weeks later and missed about the first 3 months of my daughters life..I could have written that article!! The one pill and done total bs.. I take 40 pills a day, have no thyroid or parathyroids. My last 10 years have been a constant struggle…I remember asking the dr what the survival rate was and he said 10 years but I had the “good Cancer” like any Cancer is good. So as I approach my 10 yr anniversary ofy Cancer, I’m terrified of the next body scan. Just prays that it’s all clear, God bless you Jill ðŸ™ðŸ‘
Corinne
I would like to connect with Paula as I use a pendulum to test everything u describe as well. My email is corinnepopovich@hotmail.com
Donnia Robertson
Reply to Joann Hansen, Joann I had triplets 34 years ago. I had hyperactive thyroid when my girls were two years old. A knot came up in my throat and they found it was in my thyroid. It was a cancer incased in a Rhine. No treatments of any kind. I had a problem getting my calcium level right and take a thyroid pill every day. I am just fine, and I give God the Glory as I ask him to let me raise my triplets, and I believe you will be too. One of the triplets is having a hard time now with her thyroid and heart going crazy, and I am beside myself for her. May God Bless you!!
Lisa
Oh my goodness! This article and all the comments have actually brought me to tears because I have been trying to forget. Although that pill reminds me every day. Thyca has cost me my marriage, my children, and so many so called friends. I found out in 2008 I had it AFTER the right half of my thyroid was removed. I had biopsies beforehand that turned up negative but the right half was enlarged and pushing on my vocal cords so I opted to have it removed. Only then did they discover there was cancer in it.
I found out only then that apparently I have had thyroid issues all my life but have always been called lazy. I’ve always had what I referred to as my “fat neck” but didn’t find out that it was the problem until I was 39. I had been on synthroid but never felt any better. I had the right half removed in May of 2008 and one week later they went back in for the other half which turned out to have more cancer than the right.
The really amazing thing to me was that my Ear, Nose, and Throat doctor was the one who discovered it NOT my endocrinologist. The ENT did the surgery and I feel so blessed that he did because my vocal cords were not affected.
While I was recovering in the hospital from the second surgery it was discovered I am diabetic and apparently my parathyroids weren’t kicking in because my ENT had my calcium checked and it was dangerously low.
Then I had the iodine-free monthlong “adventure” which was EXTREMELY difficult because at the time I was a stay at home mom of a 5 yr old low functioning-non verbal Autistic child with NO outside help with her. Then 3 days of isolation with the radioactive iodine treatment and the scans afterward to make sure the “treatment was doing what it was supposed to and leaving my body.
All the while this is going on I am getting the “if you’re gonna have cancer this is the one to have” FROM MY HUSBAND and he and my older child resenting me for “sleeping all the time”. Then in early 2010 my husband decided he couldn’t take my depression and “never doing anything” and said he wanted a divorce after saying he wanted me out of the house.
But that is another story, I just wanted to say THANK YOU so much for saying what I have felt in my heart practically my whole life. I am a survivor and thyroid cancer may have affected every part of my life but I refuse to let anyone make me feel not good enough or inferior because of it.
Thank you for showing I am not alone!!! God bless you all!!!
Jill
Lisa! You are not alone at all, and have been through so much! Thyca often costs us more than just our thyroids, and health! I am so sorry for all you have been through. Having a husband say that to you must have been so hard to hear. Thyca is not easy, in any sense, but you are a true survivor for persevering through it all! Please know you are never alone, and that there are so many of us here to support you!
Christine
Thanks Jill and everyone, your stories resonate with me, I was diagnosed by my GP in March 2014 after a routine check up, no obvious lump just a bit of thickening (I’m a nurse and I couldn’t feel anything different) and I felt perfectly well, so I discarded a need to have a scan until the GP rang me twice to chase the result so I went and found a nodule which I then had the biopsy. Jill, I ca really relate to your description, it was bloody painful and uncomfortable and I bled and swelled and no one would tell me anything, and two subsequent surgeries with papillary and hurtle cell carcinoma. I have had migraines and ongoing headaches since post op with the first operation, brain fog, visual problems.
I was determined to get back to “normal” ASAP, again because like so many other bloggers I kept being reminded that it was a good cancer, and I was soooo lucky. I trained hard and completed tough mudder about four months post op (with my personal trainer running beside me and pushing me), it took me about four hours to do the 20 km course and I had fallen at the 15 km mark from the second 10 foot wall and fractured my left left, which I didn’t know and kept running. I wasn’t gonna stop, no matter what. I had to reduce my thyroxine dose six weeks before the race just to be able to run, because I have found that the dose they want to keep me on to keep me hyperthyroid and reduce the risk of cancer returning is not compatible with doing much cardio at all. I was hopeless, and the doctors agreed that I could reduce the dose pre race to be able to run, and then had to increase the dose post race. Likes a yo yo, as I’m training for a spartan race in May, I have to drop my thyroxine dose six weeks Pre race to train and then will increase it again post race…with all of the required blood tests before during and after to keep monitoring the changes.
It’s constantly trial and error without a thyroid as new symptoms come up. I discovered when I went to the optometrist for my annual eye check up this week,that my pupils don’t react to bright lights now, he says may be due to nerve damage during surgery or just an effect of thyroid hormone replacement… In part explains why I have had 10 months of headaches with 3 – 4 migraines per week and wearing dark sunglasses everywhere. Oi! The neurologist has out me on amitryptilline to treat the migraines, which has had some improved effect, however they knock me out so much that I have to take it by 4.30pm otherwise I can’t get up in the morning to get to work.
And despite all of my exercise, 10,000 plus steps a day and two personal training sessions per week, I am fitter and stronger but not losing any weight, if anything I’m a bit fatter. oi! So in under a year I have gone from fit and healthy and well and medication free to a mixture of medications, foggy head, headaches and migraines, cardio dysfunction, weight gain, difficulty swallowing still and all the while in an executive and board position and finishing my PhD thesis. But I am still reminded weekly by someone, that my scar looks good and lucky it was the good cancer. But I choose to keep positive and work through whatever is thrown that me because the alternative is not somewhere I want to go. But I think ironically, having a positive attitude and pushing myself to get back to my normal lifestyle as quickly as possible has reinforced the stereotype of thyca being a breeze. The hard reality is something I keep to myself and only but a few close friends or family probably know the difficulties it has caused and I continue to struggle with.
Thankyou everyone for sharing your experiences, it is a good reminder that my story is not an isolated one.
Jill
You are definitely not alone! Please continue to stay positive, and then nothing can get in your way! There is so much to be learned on this website and in the books that might also help you figure out why you are having these issues! Getting the right labs done can make all the difference in the world! Here is a link to help get you started: https://stopthethyroidmadness.com/recommended-labwork/
I hope you continue to heal, and do well!!!
Amanda Martin
Don’t know how I stumbled across this article but I’m glad I did. As I’m typing this, I’m in bed recovering from my second surgery due to thyroid cancer. I am 34 years old. In October of 2013, I noticed a lump in my neck. I was told it was probably just a swollen lymph node due to coughing alot, due to bronchitis. A month later I visited the ER because I was still sick and was told I still had bronchitis and the lump would go away. In March of 2013, I went to my Endocrinologist and a biopsy was done. A few days later I was told I had thyroid cancer, but like everyone else’s story, I was told it’s the “best” cancer to have. Four days later, I found out I was pregnant. I was so scared because after my third child, I had three miscarriages due to complications due to hyperthyroidism. In June of 2013, during my second trimester, I had surgery in which they removed my entire thyroid, several lymph nodes, and part of my parathyroid. The nerve by my vocal cord was damaged and I could barely speak. I attended speech therapy, and eventually got my voice back. I could not follow up with radioactive iodine treatment due to pregnancy. My beautiful, healthy daughter was born in November of 2013. In December of 2013, I was able to do the radioactive iodine treatment. I too, had to stay secluded from family. Not even a year later, the lump returned. In September of 2014, I found out I had to have a second surgery to remove the cancer from my lymph nodes. Due to certain circumstances, I was not able to have the surgery immediately. On February 9th, 2015, I had my second surgery. My incision starts behind my ear and connects to my first incision. As a woman who is worried about what others think, you can only imagine how I feel I look. I just thank God, I’ve made it this far. What was supposed to be an “easy cancer,” has turned out to be a nightmare, and it’s still not over. My pathology results revealed that some of the cancer removed from me showed signs of extrusion, which means it was starting to spread beyond my lymph nodes. I will now have to see a Dr who specializes in Radiotherapy to see what the next treatment should be if any, only problem is I’m now getting Dr bills because the insurance I had through the state did not cover any of the visits and now I have no insurance. The nightmare continues.
Jill
Amanda I am so glad you found this, and it was helpful for you to read! You have been through a lot yourself! I hope you are recovering well, and taking the time you need to heal! I hope you come join us as well in our thyca group so we can support you through this!
james101
hello Jill. I am currently going thru hell dealing with my thyroid. I have had a module on my neck for about 3 1/2 yrs but i was very ignorant of what it exactly was. I never felt sick or anything but i had it looked at by a holistic dr. but he never actually told me what it was. He ran blood test and just wanted to put me on differen. Dr. Proscribed herbs. Well i didn’t feel that he was being upfront with me so i abandoned he regimen. The reason why i didnt get it checked was i didn’t have insurance and i didnt trust conventional medicine. Boy if i could turn back time. Well around thanksgiving i started to just not feel myself. I had heart palpitations and head pressure that scared the hell out of me to where i kmew it was time to get this checked. I also noticed that was losing weight muscle mass although i wasnt eating enough because of multiple symptoms. They include Heart Palpitations severe head pressure nervousness muscle and weight loss my muscles in my legs jus feel weaker than normal to the point where i feel like im walking on clouds. Dizziness extremely fatigue insomnia twitching all over hand and feet numbness lethargy. I recently have lightheadedness and a cold pressurE on my scalp. I lost about 20 to 25 pounds since late November til late February. Ive been back n forth to the emergency room for these issues and jus last week i found out ive come dowm with diabetes 2. I think the diabetes come from me not eating.
Just an overall feelimg like crap and unwell. I finally have insurance after marrying my girlfriend of 4 yrs she added me to the plan so i know now the urgency of the thyroid. Ive had a biopsy and they found a 7 cm nodule on my thy and i had a biopsy that came back suspicious and they have to run more test on the cells. The Endo docs tell me that its a 30% chance its cancer but although i hope and pray its not im preparing for the worst. So i giess i will know in about 4 days what my fight is. Oh yea i meant to also include that ive had 4 Drs check for swollen lymph nodes but they all say im fine and ive also had a scope run down my throat becausE of a nagging sore throat ive had since all this started. They couldnt find any cancer in my esophagus and colon. Ive also had 2 CT scans on my head and nothing. Xrays and CT scan on chest with dye and nothing. This is not easy fighting in the dark not knowing what it is. I will say i have every disease known on the web because of constant worrying and researching things….lol….but im reality im ready to fight.
Im also going to Progressive Integrative Medical Center center Located in Atlanta. They deal with conventional and herbal healing procedures by addressing what and why ypur body is out of whack. Whether you have a immune disorder nutritional deficiencies and toxiic overload. Im hoping that with rhese treatments i can get back to normal. This is so hard. Im wondering if there is another way to reduce to nodule without removing the thyroid altogether? There just have to be another way. Im going on 38 and i have my whole life ahead of me. I would like to know if anyone else has had any such success with curing this cancer with alternative herbal treatment. Please respond asap. I pray that everyone on here can continue to fight the good fight and overcome these unfortunate thyroid ailments. May God/Yah bless you all
Jill
Hi James! I hope you are doing well. If it is not cancerous, this article may help you decide how you would like to proceed to address your nodules: https://stopthethyroidmadness.com/2014/08/02/case-missing-thyroid-nodules/ Otherwise, if it is cancer, the best treatment is to surgically remove the diseased tissue. I know it is not an easy road or decision to make, but please know that there is a lot of support out there for you! The FTPO-For Thyroid Patients Only on facebook have been life savers for me! I encourage you to come check it out, and join us!
Wishing you well!!
Kim
I am so glad that this whole article was a post from FaceBook. I am so happy that we have Social Media. I am sharing my story and and hoping for advice, and support for myself and hoping it can help someone else.
In February 2014 at 26 weeks pregnant I underwent elective surgery for a “crazy lump on my neck,” as I called it. In January my primary care Doctor laughed when I suggested a second opinion after she just poked and felt around it and said, “Not every bump and lump means cancer.” She sent me for an Ultrasound where two >1mm nodules were found on my thyroid and the report just told the size of the lump, (lymph node) with nothing else. So she said see nothing to worry about. I told her, “I’m 31 years old and nothing like this has ever happened,” knowing my gut feeling and pushing to see a specialists, I didn’t know who to even ask for but I wanted to see someone. She was very offended and referred me to an ENT. At the ENT’s office, he was confident that I was too young and it’s not cancer and gave me 3 options. First, he could needle biopsy it which he said he probably wouldn’t get anything out of it because it’s so hard. Second, we will watch it for 6 months to see if it goes away or grows…..ummm, NO! And third, we can do surgery, 6 weeks after the baby was born, her due date was April 24, or since it was so close to the skin surface we could do a little incision under local anesthesia. I picked that option without even consulting my husband until after we got in the truck to drive home. While in the truck I talked to him about it and he was 100% behind my decision but I then got nervous and thought I made the wrong decision because what if something happened to me or the baby during surgery. So on February 13, 2014 I underwent elective surgery. The anesthesiologist came in which clearly he and my ENT didn’t talk because he was pushing me to go under and that’s when my Midwife got on the phone. I wasn’t going under because of the risks it could have on the baby. My husband met me in the recovery room with the Head RN of Labor and Delivery to check all my vitals. The ENT told my husband surgery went good and I was an excellent patient. I had my follow up a week and a half later and that’s when the results came back Papillary Carcinoma Thyroid Cancer, I was 28 weeks pregnant. I ended up getting another opinion and seeing the best Thyroid Cancer surgeon in Reno. I had my baby April 12 and underwent a 100% thyroidectomy April 30 with 14 lymph nodes taken out, nine of which came back positive. Six weeks after surgery, I had my blood work which my Thyroglobulin levels came back high still meaning more surgery. In June I went to UCLA and saw an amazing Doctor, Dr. Michael Yeh, where on my first appointment he conducted his own Ultrasound and found at least three more lymph nodes that needed to come out. I was scheduled to have surgery the first week of August and while I was in surgery he conducted another Ultrasound to see exactly where he needed to go and what to get. 14 more lymph nodes in my collar bone area, nine positive and two in my jawbone, both positive. In October I did my RAI-131 treatment, being away from my toddler and baby for a total of 16 days was extremely hard but thank you Apple for having FaceTime! In December I took another follow up trip to UCLA to have more blood work and my Thyroglobulin levels came back at .4 and in January came back at .5. I am sitting here shitting my pants, like all of us are, wondering WTF, and what is next? Why I am sitting here a year later with three surgeries and RAI with cancer still in me? My next appointment is in April where I am getting more blood work of course and a Ultrasound. I go to a Thyroid Cancer Support Group, which has been amazing to my husband, girls and I, but I can’t always make it and there are times I really need to go.
One other thing that is really important to people (Doctors) who think that this is a “easy/good” cancer. You have no idea the emotional toll this take on you, your family and your friends, let alone your wallet. We have great insurance, but we blew through our savings to pay off some of the medical bills and have over a $10,000 credit card bill due from more medical bills that never stop coming and all the travel from Reno to Vegas to drop off our girls with my family then onto to Los Angles. We’ve had to make this trip so many times and will be making it again in less than 2 months. Also not to mention all the nerve damage and pain I have from my forehead to my chest from my last surgery. I have 3 incisions, a small 1 inch from the first surgery, of course my thyroidectomy scar and a 4 inch scar going diagonally down my neck. I didn’t want the lovely J-Hook scar so I have one that will blend in when I get my wrinkles on my neck. Honestly with the scars comes the looks, which it’s like just ask, don’t stare. I usually just look them in the eye and say, “Cancer!” But at least I can tell my story and if I help at least one person I am happy about that. All of my family and friends say, “Your such a strong, amazing woman. I don’t know what I would do if I were in your shoes?” Honestly, cry in your closet so your toddler doesn’t ask why Mommy is sad. But I do feel like I am becoming that strong person, I have to fight for two beautiful little girls and there’s no way I am giving up.
I know there was another woman, Jackie, at the top that said it spread to her Lymph Nodes. If you read my story I would love to talk to you. Everyone I have met, it was just in their Thyroid. I want to know what your doctors are saying to you. My e-mail is kimmiee059@hotmail.com, please e-mail me if you get a chance and good luck with your up coming surgery.
Jill
Kim you have been through so much! Unfortunately, there are many who have had thyca spread beyond their thyroids. We need to continue to spread awareness so this disease starts being taken seriously and survivors get the tools they need to fight it! I hope you are doing well, and continue to heal!!
maureen
Thank you for being our voice. Your article is so spot on for my situation. Plus i had a severe allergic reaction to my rai. Cancer sucks. I had graves in one lobe as well as hashimotos in the other lobe of thyroid as well as cancer. All my bloodwork before diagnosis came back normal. A physician actually accidentally found the lump. If not for my family and my faith, i would have lost the plot. I haven’t been this tired in my intire life.
Jill
Maureen, it is my honor to do so. Please know that there are things you can do to help with the fatigue. Had I not found this website, and read the Stop the Thyroid Madness books, I would not have come as far as i have. Keep fighting to feel good!!! Wishing you well!
Cassie
Forgot to mention. I have stage I follicular variant of papillary thyroid carcinoma (fvptc). I am only 28. While the results of the 2nd surgery aren’t back yet, there wasn’t evidence of local metastasis. That means my prognosis is very bright. But that doesn’t mean it’s like getting over a flu, which is an attitude I see a lot. Subtle comments still come across like “oh… you’re not going to die? That’s great! Then shut up and move on with life!”. That was the same attitude I saw about choriocarcinoma (a malignant form of what I had that caused my 2nd mc, which has an extremely high rate of survival). What’s worse is that it was often women who happened to have another form of cancer before they had GTD, who would say things like “I don’t consider it a real cancer” or “calling choriocarcinoma a real cancer is an insult to those of us who have actually had to battle something serious”. It really is sad that some people not only feel like one person’s struggle is an insult to another, but that they would demean that person’s pain because of this childish sense of competition. I’m new to the thyca community, but I’m sure that this is not an attitude many here are unfamiliar with.
Jill
I completely agree! I hope your results came back as you hoped, and that you are doing well. I know it isn’t easy, but thankfully, we have an amazing community full of support!
Cassie
(warning, long)
This last year has been a flurry of emotion and health problems. In August I lost a pregnancy to a rare condition called Gestational Trophoblastic Disease. It was a molar pregnancy, meaning the fertilized egg didn’t have the right chromosomes, so clusters of tumors took over my uterus. That came with a 1/5 chance of malignancy and had me feeling like crap for most of the 3 months it took for my hormones to return to pre-pregnancy levels.
I seemed to slip right from one health problem into another. I was well for a few weeks, then my daughter came home from school with a sore throat and fever. I, of course, had to get it. My sore throat went away, but my low grade fever never did. That started mid-october. After 3 weeks of the fever, I gave into my husband bugging me, and went to see the doctor. After that first visit I started to develop body wide chronic muscle and joint pain. It’s no exaggeration to say that NO muscle or joint was spared, though they did not hurt all at once. They were courteous and took turns. Add to that the fatigue that never quite disappeared from my lost pregnancy, depression, all around malaise, and a few other symptoms slipping my mind. The last 6 months have been so fun.
Over the next couple of months, I was handed from one specialist to another. My TSH was normal, so that was not an immediate suspect. After dozens of tests, they ruled out all the infectious “go to” culprits for my symptoms, as well as several other things. I was so fatigued and in so much pain that I only got out of my bed long enough each day to play family taxi. The next thing I’m hearing is that it is more than likely an auto immune disorder, with a slight chance of cancer (now this is sounding like a weather forecast). They, of course, had to rule out the GTD that I was still having follow up tests from, so I had some xrays and tests that didn’t seem to show any returning tumors or evidence of malignancy in relation to the lost pregnancy.
Next step… CT scan. Well, amongst the findings they were concerned about a nodule on my thyroid. On now to an endocrinologist. Ultrasound showed 2 nodules (FYI, to anyone reading… nodules ARE tumors but people think they are unrelated because the word “tumor” isn’t used when referring to thyroid tumors). Because one was nearly 2cm, they sent me in for an FNA biopsy (another FYI for anyone who doesn’t know, FNA biopsy involves putting a needle in your throat several times to get a sample of the concerning nodule(s)). That came back “undetermined” (in other words, sorry, no clue either way). My doctor had the foresight to take a 2nd sample during my FNA biopsy, and sent that to a lab in Cali for a more in depth test. That one finally came back… suspicious for cancer, 40% (still no real clue, but 40% chance it is cancer). Mind you, this whole time I’m being told there’s very little chance that my symptoms are actually thyroid related. At this point I had gotten sick of waiting for answers, and started working with light weights and resistance bands to help ease the joint pains and build my muscle up a bit from all the inactivity and fatigue. Well, I’d say it helped ease the pain 20-30%. I also cut out fast food 100% and junk food 95%. That DEFINITELY helped with the fatigue and energy problems. Nothing touched the elevated temp (that was a predictable afternoon100.6). Because it was suspicious for cancer, and the larger nodule was 2cm, they needed to at *least* take out the side with the nodules to do a surgical biopsy.
I had to make the choices between taking it all out and not risking a 2nd surgery (but that risks definite pills for life even if it was benign), and only 1 surgery (that risks possible pills for life, and another surgery if it’s malignant). Well, I have an awesome surgical oncologist and put my trust in his judgement. So we went with the right thyroid lobectomy (they only take out the side affected).
February 10th (day after birthday) I get half removed. I had a bad reaction to the anesthesia this time and spent hours throwing up and falling asleep only to wake up throwing up again. My incision did NOT appreciate that, and my steri strips were bloodied as as a result. Between the 1st and 2nd surgery I noticed my temperature did lower a bit from 100.6 to 100.2-100.4 max. My energy was up and down. It was nuts. One hour I could sit still. I had so much energy (this was the most energy I had in many months, it was awesome) then *crash* and I’d feel like I just ran a marathon the next hour. The lack of neck mobility made it fun to figure out sleeping positions.
February 13th “it’s cancer” back for another surgery (it was particularly fun getting that news on the day I had an early mc a year prior).
February 16th they removed the rest. Oh… and my anesthesiologist is a thyca brother and made extra sure I would NOT have nausea problems this time around (oh thank you, thank you, THANK YOU!!!). Also kudos to my surgical oncologist. I only had to take the narcotics the day they sent me home. After that I was achy in my muscles, but not really in a lot of “pain”. My lower left arm is still sore a week later from all of the needles I got. So I had a lot of energy the first 2 days, then day 3 was off and on, and days 4, 5, and today are all complete crashes. 0 energy. Completely fatigued. Easily out of breath. I am on calcium, but not sure yet if it’s temporary or not. I’ve gotten a lot of neck mobility back at least, and can finally drive again. Since this last surgery, I *have* noticed less chronic pain, and it’s hard to tell if the pain I do have is because of the surgeries and inactivity, or problems I had prior to the surgeries.
Here I am now. I had a follow up 4 days post op with my surgical oncologist. My endocrinologist will take it from here. I have NOT been put on meds yet as they are gong to do the Radioactive Iodine. I’m calling my endo tomorrow to push up my follow up that was made before they knew it was cancer. I’ve pretty much been pretty isolated for the last few weeks anyway. My daughter and husband both first had a stomach virus, and now a flu. For fear of getting me sick around my surgeries, they’ve been avoiding me like the plague and my husband has been sleeping in another room. While my husband has been VERY supportive of me and making all the food (this, in itself, is a miracle), it can still get really lonely to go through this all with people standing several feet away to talk to you so they don’t get you sick.
Now…. onto radiation and figuring out how we are going to one up this isolation, this time to keep THEM safe from ME. Then onto figuring out the dosing of my meds, and hoping my symptoms that brought me to discover this cancer go away, and that they both STAY away.
David Walpole
Hi I’m a selenium researcher [15yrs.] iodine [2yrs]. I didn’t see any mention of these two elements in the accounts above. We now know a plasma Se level of 1.6-2 mcrml/lt. is needed for optimum health. iherb.com is a good selenium source costing < $8 for 6 months. As eveybody is Iodine deficient [we need 100 times the RDA], please read Dr.David Brownstein's book on Iodine, why we need it….etc.. and Overcoming Thyroid Problems. He is a Dr. that is doing his homework and beyond. The accounts above are quite distressing. Correcting deficient levels of both elements can take ? 3 months. We have cured one ME/CFS patient so far [sort of related], by having these 2 levels correct
David Walpole.NZ.
Michele West
ThyCa has been anything but easy for me. I ended up with permanent hypoparathyroid damage and for those of us with this side effect of thyroid surgery, life is extremely difficult and pretty much totally disabling. There is nothing easy about a TT when you take the risk of having permanent calcium, magnesium and phosphorus problems the rest of your life along with no thyroid. I just wish there was a better way to help people know about this ahead of surgery, as it is pretty much a preventable condition!
Molly
Im looking for answers on this.
Did any of you have a low sex drive or no sex drive at all after your thyroidectomy?
I hope for your answer.
I had thyroidectomy last year and I dont know if this is a common effect.
Jill
Hi Molly- It is not uncommon to have a sex hormone imbalance, or low T3 after having a TT. You may want to request that your doctor run tests to see how your levels are, and make sure they run a Free T3, Free T4 and Reverse T3 to see if you are low in T3. I hope you start to feel better soon!!
Sonja
I had half of my thyroid removed when I was 18 due to a very large haemorrhaging “cyst” and multiple large nodules. Didn’t require any medication as the body copes fine with what they left me. Yeah right! Since then I’ve suffered extreme joint pain, endured 8 miscarriages, had to have a complete hysterectomy at 32 years of age whilst being oblivious to the fact that this tiny organ was not functioning to the best of its ability. Fast forward to 2 years ago when it was discovered that I had nodules growing again that were so large they wee constricting my trachea and oesophagus to the point that if I didn’t have my thyroid and nodules removed I would be dead in as little as six months. But ” don’t worry, if it’s cancerous, it’s the best cancer to have” grrr. I had my thyroid and nodules removed and results came back papillary cancer. But again, ” if you have to get cancer then this is the one to have”. My specialists argued as to whether or not I should have radiation and in the end I was told I should be fine without it. In three months post surgery until now, I have gained 30 kilograms, lost ALL my energy, have massive hair loss, have suffered anxiety and major depression, developed IBS, have worse joint pain than ever, am constantly hot to the point of sweating or am freezing cold. I too was put on levo just once a day and have been anything but fine. I don’t often say too much to anyone but I honestly suffer this disease daily. The joint aches and extreme tiredness make it so hard to function. I work full time because I have no choice as my disease isn’t seen to be that bad. My children are wonderful with helping me out but it makes me feel so guilty because I rarely have any fuel in my tank to really enjoy doing things with them. I started on NDH and was feeling so much better – lost 8 kilos in 2 months, the joint aches stopped etc however, the price of NDH is so expensive ( not govt subsidised) that on a single wage i just can’t afford to continue. So 6 weeks ago I had no choice to go back to levo. So have gained back 7 kgs, the joint aches are worse than ever and am once again so tired it’s beyond ridiculous. More research is desperately needed into this insidious disease. Drs need to be better educated and start listening to their patients. My biggest fear is my children getting this horrible disease. I wouldn’t wish this on my worst enemy.
Jill
Thank you for sharing this Sonja! I am so sorry you have gone through so much, and had to go back on levo. I hope you are on some T3 as well as that could help. But hopefully, you can get back on NDT soon so you can start to feel better again. My heart really goes out to you! Stay strong!!!
Rosemarie R
My thyroid cancer was discovered by me in December 2012. Just 6 mos after a break up of a 21 yr old marriage… For at least 10 yrs prior to my diagnosis I complained of arrhythmias, anxiety, racing heart on and off and would come on out of the blue….. Not one dr believed my symptoms ….including my ex husband who was a reproductive endocrinologist! I was labeled as a peri menopausal 40 something…who just like to complain a lot.. I remember once receiving some estrogen creme on my bathroom sink.. One Eve from my ex…as this was my cure all… Lol!! My thyroidectomy and neck dissection were jan 2013..,I finally completed rai in May 2013….due to my age my surgeon told me I was a stage 3! He also stated that my disease was extensive and was certain I had this cancer growing at least 10 yrs!!! I was fuming!!! I am also one of the unlucky few who lost 2 parathyroid during my cancer surgery…I have struggled since… No longer on synthetics…so far only can handle 2 1/4 grains nature thyroid! I struggle with pooling…I’ve reversed low iron and high cortisol! Now on occasion deal with low cortisol… I now have learned that I have an autoimmune disease…and MTHFR issues… But the worst I’m dealing with is inflammation… Which I am determined to conquer …. I am now forced to begin a GAPS diet in attempt to heal my gut which may take years… I still deal with neuropathy and take calcium for the rest of my life… As well as potassium and many other supplements…I feel like I am peeling layers of an onion here….I hope someday I won’t be hypo and will tolerate my natural thyroid one of these days!!! Although I must admit the pooling is far less on naturals than synthetics for me…..but this is a painfully slow process which I deal with every day. I’d like to thank all of these wonderful folks on the boards online who share their war stories! You have all helped me immensely…
Jill
Hang in there Rosemarie! I know you have been through so much! I too have MTHFR, which complicates things. https://stopthethyroidmadness.com/mthfr But there is a ton of great information on this website, and on the boards to help you navigate this. You may want to research low dose naltrexone as well for inflammation. Hoping you find some relief soon! Thank you for posting!!
Ledia
Hello , friends.
I had a baby girl at age 27 , after 2 years of trying to get pregnant. After her birth my neck became larger. I went to the doctor and had the thyroid checked. He sad smth like adenoma but no problem with it at all. The only recomandation was : After you will stop breastfeeding ,you can Have partial removal of the thyroid just for esthetic reasons. The biopsy was done and they told me it was with benign natyre.
I had total removal of the thyroid after 2 years and the biopsy was totally different. It was papillar carcinoma stage 2. I had RAI 2 times and the doctors say is everything ok. Im just taking 175mcg t4 and for the last month , i started an extra 25mcg t3.
Life has been a mess through these last 6 years .
My daughter is 6 years old and has started already going to school, the first year . I am raising her alone know.
Married life has been Very difficult through this years . As a person without a thyroid , i was sometimes depressed , smt irritated Or angry and i didn’t find the support i needed to pass through this. So , the marriage finished in divorce.
I am trying to pass through all this with courage but my body and mind are having difficult times.
With all my problems, the worst is That i can’t find a doctor to discuss with open mind to change t4 on dessicated thyroid hormones. I am from Albania, living in tirana.
I thank you Very much for this page, gives me a lot of support.
Jill
Keep fighting to get on NDT Ledia! It has really been so helpful to me, and so many others who have had thyroid cancer. If you can, call a compounding pharmacy near you to find if they know of any doctors who prescribe NDT, or look on the Nature-throid and Armour websites to find one near you. This may also help as well: https://stopthethyroidmadness.com/how-to-find-a-good-doc/ Wishing you and your daughter well!
Renee
I was diagnosed with thyroid cancer in 2002. I had a total thyroidectomy (lost 1 parathyroid in the process) and a round of RAI. I was 22 at the time and clueless of how the removal of that gland would forever change my life! Thyroid cancer is not something to brush off, it forever changes your body. I just recently found this website. I have been on Levoxyl for 14 years and never had a doctor mention natural thyroid hormone. I am trying to locate a doctor who will prescribe it for me in my area. I thought that debilitating fatigue was part of not having my thyroid, now I know I have options! Thank you!
Jill
This website and the Stop the Thyroid Madness books helped me get my life back, Renee! I have been on Nature-throid for 2 years now, and doing so much better now. There is also a group on Facebook called FTPO-Without A Thyroid that is fantastic for learning and navigating making the switch from T4 only, to NDT. Hope to see you there! BTW here is some information on finding a doctor who prescribes NDT: https://stopthethyroidmadness.com/how-to-find-a-good-doc/ Good luck!!
Gillianne
I’ve been searching for this kind of Blog or writting about thyroid cancer. Here is my Story, I was diagnose with thyroid cancer on Feb2014 and had my surgery right away on the first week of march2014. I was also told by my doctors that “IM LUCKY” to only have this kind of cancer. I dont know if this is there way to tell me not to worry too much about my situation that time so I just let it pass. Come June2014 I had my RAI wherein I really had a hard time being there in a room ALONE with swollen checks and salivary glands. I also had to leave my work for 5months. After the therapy I was only advise by my endocrinologist to take 150mci of levothyroxine and thats it. Im from the Philippines, Manila to be exact I had my Surgery and therapy on one of the “best” hospitals in our country just to be sure everything turns out well since this is my very first confinement after I was born. (I was just lucky to have my health insurance). HERE IS THE DISCRIMINATION PART THAT I EXPERIENCE OF HAVING THYROID CANCER. Since I was on leave for almost 5months I submitted a claim to SSS (social security system) be claim my dissability benefit, I was told by the officers there (one of them is a DOCTOR) that thyroid cancer is not so intense of a cancer for me to claim anything as a benefit, and beside I can still walk, talk and be employed. I really feel bad cause I no longer have a thyroid and parathyroid and base on the SSS partial dissability claim if any of your organ major organ is removed you are illegible. Second is I asked for a “PERSON WITH DISSABILITY ID” for me to have discount with my vitamins and other priscription when I go to the pharmacy but I was only told that Thyroid cancer is not elligible for the PWD ID! (Im like what? did I just have a FEVER for you to treat me that way?) Im really sad that people specially on the medical field dont treat this seriously,.
Jill
I agree. There is no excuse to treat cancers differently, especially since each cancer comes with enormous consequences, and often life-long disabilities. Hopefully, the more we all band together, we will continue to raise awareness and change the way thyroid cancer is viewed and treated by the system. Keep fighting and telling your story! We can make our voices heard!
Gillianne
I hope our voices will be heard specially for women like me here in the Philippines. I am only 26 years old, My doctor only prescribed me with levothyroxine, aside from this do you take other hormones?
Jill
Actually, I do not take any T4 only meds, like Synthroid or Levo. I take Nature-throid, which is a natural desiccated thyroid hormone that is bio-identical to what our own thyroid would make. I am doing great on it! I am also on other hormones to correct a sex hormone imbalance. Here is some great information on why I prefer NDT: https://stopthethyroidmadness.com/t4-only-meds-dont-work/
Gillianne
Jill im interested with this Nature-throid i just dont know how much ths cause here in the Philippines. Can you please tell me how much it cost there? (are you in the US?)
sam
i was diagnosed at 13 yrs old with both papillary and folicular after having heart palpations and finding a lump in my neck and having half my thyroid removed because doctors said there was no chance of cancer the pathology came back with cancer i then had the other half of my thyroid removed. after having my total body scan i was told i had cancer in my neck, luns, ribs, and inside my left radius in my arm something they hadnt seen before at my peds hospital. i then had an incredibly high dose of RAI and was locked away for 3 days without my family. after 6 months i had my test again to find out the cancer in my arm hadnt gone away and was to undergo another massive RAI treatment. my parents decided to get a second opinion where they biopsied my bone to see if there truely was cancer there was and i went and had the RAI. do to the hormonal imbalances i had a massive cyst on my ovarie which caused my overie to twist and me to go into yet another surgery in 2 years. they then fixed my ovarie but found a mass under the cyst. sense this i have had a biopsy that went up under my jaw as well as having to wear a heart monitor developed reynalds from all the meds as well as having hair falling out and unflattering weight gain and loss. im now only 17 going on 18 fighting for 4 years and wondering where the thyroid cancer support is.
Jill
Sam! You are so brave! Thyroid cancer is hard enough to deal with, but being so young I can only imagine how hard it has been for you. There is a ton of support on line among various thyroid cancer groups on Facebook, that have been a godsend to so many of us. I hope you are part of that and if not, feel free to message me on FB and I will give you some information. Just know, you are not alone!
kristina
I’m early into this journey with thyroid cancer, but often feel alone. So far I’ve just let my parents and children think “its the good cancer” because I don’t want to scare them. I don’t want to burden my husband with more complaints/worries/fears so I keep a lot of it inside. But, dammit, I’m scared. I just finished RAI and the post scans look good, but now the tinkering with the medicines commences. I”m not looking forward to it.
Jill
Kristina- you are not alone. There is an entire community of thyroid cancer survivors that are here to support you and help you through this. Please feel free to message me on Facebook and I can give you more information. While I totally understand you want to protect your family, let them be there for you. Going through the ups and downs of thyroid cancer can be too daunting for anyone to handle all alone. Please take good care of yourself!!
Lillie slone
I have been taking synthetic 200 mg for about 2 years now .was on 100 mg for about 6 years before that all I was ever told was that I have in active thyroids. But other than that pill and a blood work about every 2 or 3 years to check my levrls.
Jill
Sounds like you are doing great! There is a ton of great information on this site in case you wanted to look into Natural Desiccated Thyroid (Armour, Nature-throid, etc). Hope you continue to feel good!
Jen Centers
My story is very similar to the one posted. An MRI revealed ‘nodules’ on my thyroid. My family doctor said “thyroid cancer is so rare, I’m sure it’s just benign nodules” but sent me for a biopsy ‘just to be safe’. The diagnosis came in on 9/13/2011. I had cancer… So, I met with a surgeon to discuss my options. He told me that “thyroid cancer is so rare and 90% of those cases are papillary and extremely treatable”. He wanted to take just half of my thyroid. I asked what would happen if it was something more aggressive. He said that on the absolutely non existent chance that it is, they would have to go back in and take the other half. I told him right then that I would not sign the papers to have just half taken. That he was going to take it all or none. He made a comment about me being ‘hard headed’ but begrudgingly agreed. So, less than a week after surgery, I received a phone call. He started by saying that he was REALLY glad I’m so hard headed. Then he started naming these weird words. Follicular Hurthle Cell Carcinoma. A Very rare and aggressive form. I would need radiation. That was hell… Here I was fresh out of surgery and I had to be extremely careful about everything I ate for a few weeks. Then I had to swallow something that the staff had to wear protective hazmat stuff just to bring in. But… I was supposed to INGEST it??? Then I was quarantined for 3 days. No kids, no one. I was nauseous and tired and I just felt so alone. After it was all said and done, I was sent home with a rx for synthroid. WRONG move! I had such a horrible reaction. And again and again to many more synthetic versions of the hormone. Until, my family doctor decided he was tired of seeing me suffer. He prescribed Armour Thyroid. I had been severely hypothyroid for 15 months at this point. So, while my story is still developing, there’s the beginning of it.
Jill
You are on the right track! Once you get on the optimal dose of Armour, you will feel like a new person. The STTM guidelines have really helped me, as have the groups on Facebook. I honestly do not know what I would have done without them. I hope you continue to get better and better! Thank you for posting!
Barbara D.
I agree! I was also told that this is considered the good cancer and that I am really lucky that I have it because it is treatable. Well fortunately/unfortunately for me I have a rare for of thyroid cancer. I have Medullary Thyroid Cancer which affects about only 5% of the population. Way less than the other three types of thyroid cancer. The good part is they can treat it with surgery and you do not have to go through radiation for it. The bad part is they cannot use ratiation to treat it. If by chance that it does recurr they cannot use radiation as a treatment because it does not respond to radiation. So that means that if it comes back they can only do surgery but if they are unable to do surgery, there is no other treatment for it. So if they can do surgery, they can but if not, I am just out of luck. Also, my type of thyroid cancer can come back and it can travel to other organs like the adrenals, the prostate, the kidneys, etc..
Let me give you a little insight as to how thryoid cancer patients are treated when seeking treatment. At my doctor appointments with my primary care doctor, prior to being diagnosed with thyroid nodules, I told my doctor about the fact that I gained so much weight in 1 month but that it could not be my eating because what I was eating and how I was eating were not so outrageous that I would gain that much weight. He just thought because I was overweight, it had to be because I was over eating or eating the wrong things and not trying to do anything about it. He was so wrong!
He had also given me a high blood pressure medication that caused my throat to swell. While it was swollen, I felt something hard in my throat but did not know what it was. He told me it was my Adam’s Apple. We are told women do not have Adam’s Apples so why did he not listen. Again I think that he thought if I just lost some weight that I would feel okay. How wrong again. I was also experiencing insomnia which is another symptom and my hair was dry, and brittle, and I was experiencing something simular to hot flashes but that did not make any difference either. He just figured I was going through the change because I was 55 years old. It did not matter that this is also a symptom of thyroid cancer. I also told him of my nagging feeling of just not feeling well. I told him I had the same feeling before when I had my brain tumor.During this time, another doctor from a different hospital and medical group, suggested that I go back to my doctor and ask him to do a CT scan because of the TIA’s I had been experiencing. I did and he also disregarded that and told me no. He did not care that it was a licensed practicing doctor giving us his wisdom and expertise. (I have made several complaints against this doctor to the state medical board and the administrative office where he practices and nothing has ever been done. He told the medical board that that was not true and they sided with him. The thing is, I think this doctor has had other problems and was called up on it because he intentionally does not put in any notes on what I tell him. He only puts down that the patient came in for a return visit, he filled the necessary prescriptions and gave the patient a return visit for 3 months. Nothing esle because his notes probably got him in trouble before so now he does not put anything except that so he can deny it ever was said or that it ever happened. What a jerk! What about the oath he took? He did not care and neither did he or the administration.
Since then, I have heard and read several times that if you have any of these symptoms including a nagging feeling of just not feeling good and you are not able to put your finger on it, that YOU HAD BETTER RUN, NOT WALK TO YOUR DOCTOR AND GET CHECKED OUT BECAUSE THEY ARE NOT JUST SIGNS OF THYROID CANCER, BUT OF CANCER IN GENERAL. Then here we are again, what if you have one of those doctors that do not take what the patient has into consideration? What if you are one of those doctors that think that the patient does not know what the problem is only you do as the doctor? It is attitudes like that that delay our diagnosis and our treatment and set the stage for recurrences because of the unnecessary delay.
Besides being mistreated by their doctors, thyroid cancer patients also have to experience being mistreated/treated differently by their family members and other people surrounding them (friends, co-workers, etc.. Besides being told we have the good cancer, our cancer is the dismissed by these people because they think we have it easy because we have the good cancer. My own Mother was in the hospital when I had my surgery and could not lift over 7 pounds for a while after surgery and since I had to help my mother get to and from the bathroom when I was there and had to push her around, I stayed away for about 2 months while I recuperated. Before I came back,my own sister called me and wanted to know when I was returning. She did not care that I just had major surgery. She acted like I just had a minor procedure done at the urgent care and would be okay. She did not want to give up her time to take care of Mother. She did not think she had to be inconvenieced so she wanted to find out when I was coming back so she would be releived. She did not care that I had cancer or how much you body goes through when you have surgery. Nothing mattered to her. People treat us like this everyday. Like we do not matter. Because it is the GOOD CANCER, it is just a bump in the road and is all. Well we do matter and we are not going to take this treatment anymore. We are going to stand up for ourselves and let people know it.
Several months later, I ended up in the emergency room with another TIA and there I got a doctor that listened when I told her no one will listen to my symptoms or sends me for testing. She promptly got me a doctor who was willing to listen to what I had to say and run that test. He came back and ask me if I was depressed. I told him yes. He then told me that that is probably why. He then told me that the test caught part of my thyroid and it showed that I have 3 nodules on my thyroid. He then referred me to the thyroid clinic at the hospital.
It was 3 1/2 months before I had blood work, an ultrasound, and finally got in to see a doctor about the nodules. I was told then that I probably had Medullary Thyroid Cancer because my calcitonin leve (the marker for the cancer) was 444. They were pretty sure this is what I had just from the calcitonin level It was another 2 months before I had a Fine Needle Biopsy. I was poked in the thyroid more than the normal amount of times it takes to do the biopsy because they had such a hard time getting a good enough sample to send to the lab. After the results came back I was told that the test confirmed that I do have Medullary Thyroid Cancer – Sporatic. I was then told that I would have to have a total thyroidectomy and would be put on a thyroid hormone that I would have to take the rest of my life. I was not happy about this because I was on several medications for 27 years earlier for a condition it turned out that I really did not have. I did not want to have to take one more pill in my life and right now I did not. I was sent at that time to another department at the hospital to do testing to see if my cancer was hereditary. Turns out that it is not hereditary that it just happened.
After those results came back, I was sent to the head and neck department which is where the surgeons are and had some more tests done and my bloodwork done to get ready for surgery. When a date was finally set for surgery I did not get in until the 8th of September. I HAD TO WAIT 9 MONTHS FROM WHEN THEY WERE FIRST DISCOVERED UNTIL i COULD GET IN AND HAVE THE SURGERY TO HAVE MY CANCEROUS TUMOR REMOVED. THAT SHOULD HAVE NEVER HAPPENED!!! I SHOULD HAVE BEEN ABLE TO GO INTO THE HOSPITAL WITHIN 3 MONTHS AND HAVE IT REMOVED. All the time my cancer is growing. It is not slowing down or stopping because they cannot do surgery. It is still growing and we do not know how rapidly. It is just a chance we have to take!. (I have to say it was not all the hospital’s fault because we did have 3 hospitals in the area close down and those patients were sent there to be treated and so there were no beds available until then and if it happened now, it probably would not take as long for me to get into surgery because they have done a major renovation of the emergency room, operative room, and have added a new wing so there are more beds available. Because it is a county hospital though, they do not move as fast as a private hospital. This is a major problem.).
During surgery, I guess they decided that they did not have to remove the whole thyroid and only removed part of it. Most people have their parathyroids tranplanted because they do not always do well after surgery and by transplanting them, they sometimes do better.They checked mine out but left them in because the cancer had not left the nodules or the thyroid as they could see. The operative report stated though that a normal incision for a thyroidectomy is 4 inches but because my neck was so large, they made a 6 inch incision. It turned out that my thyroid was large so I guess it is lucky they made a bigger incision. All of these decisions were made in the operating room and was not discussed with me prior to surgery. I was the patient and was left out of the loop. This happens all the time. Doctors do not always give us all the information and they do not always explain everything so we can understand it so when we ask they get discusted with us. We are the patients and did not choose to be there and they cannot give us the time or the respect necessary to answer our questions. It is to much of a bother.I am not the only one that goes through this. I have spoken to a lot of other thyroid cancer survivors and they say the same things about their doctors. Primary care doctors, endocrinologists, oncologists, etc., do not treat them with the care they deserve.
After I had surgery, I immediately felt better. I had had that nagging feeling of just not feeling good but could not put my finger on it. It was the same feeling I had prior to my brain surgery for my seizures. It was no longer there after surgery. I was in the hospital 5 days because the incision was still draining. Once the draining stopped, they sent me home. When the doctor came in to remove the tube, he had a hard time and when it finally came out it sprayed blood on him. Now because we are post HIV and AIDS, I now had to have an AIDS test so the doctor would know if he was in the clear or not. Now because of this I could not leave that day and had to stay in the hospital one more day.
When I got home, I was on a high for the first week. I felt great! Then I crashed! I do not know what happened but the doctor told me that it was probably because I still had some of the natural thyroid hormone in my system after surgery and then they gave me the thyroid hormone medication so it made it so I felt really good. I was so bad that all I did was sleep most of the day. I woke up long enough to go to the bathroom, but was not able to eat. I just had no strength. Just the thought of preparing something and having to eat it was to much so I would turn over and go back to sleep. When I called the clinic, I was told to at least drink some juice. So what I did was get a glass of juice and put ice in it and a glass of water and put ice in it and put both of them by my bed so during the day when I woke up, I would take a drink of the juice and then wash it down with a drink of water and would take my medication at the appropriate times but did this daily until the thryoid hormone finally kicked in.
I had to go to regular visits after surgery. First every three months then every 6 months and then after that it is once a year. On my first visit I was told that the markers for the cancer went from the 444 down to the 40’s so that was good but it was not totally gone so I had to wonder if the cancer was lurking somewhere else in my body and could rear its ugly head at any time but the only thing the doctor did was to give me a revisit appointment and watch me. Finally this last spring when I went in for my return visit, she told me that the calcitonin level cannot be picked up by the blood test anymore because they are so low. It no longer registers on the test. She went on to say that because of this, they consider me cured. Now that is what they have to say according to the guidelines for treatment. If they fall below a certain level they are to inform the patient that they are cured. Remission is not discussed but the horrible truth is that once someone has cancer, they are never really cured. They are considered in remission but never fully cured because it could come back at any time. It may not even be the same cancer that they experienced before, it could be a totally different cancer and it could be somewhere else in the body. Not the thyroid/thyroid area.
About a year after I had surgery, I went to another one of my regular visits to the endocrinologist. We were talking about what I was eating after surgery. I said that I use the microwave to prepare some of my meals once in a while. The endocrinologist told me to stop using the microwave because of the reason that I had thyroid cancer, I could now get throat cancer from using the microwave. Oh! No! That is all I could think of! I had been using the microwave pretty consistently in my home since 1984 and it was now 2012! Now they tell me. I realize that I did not have thyroid cancer back then but I am sure the damage has now been done. Just another thing we need to worry about. Having thyroid cancer is not enough, Now we need to worry about throat cancer also. It is just not right.
This is not my first bout of cancer. I was treated my whole life for seizures they thought was Epilepsy but it turned out to be seizures caused by a benign brain tumor that I had removed in 1987 and have not had a recurrence or another seizure since surgery. You see so I am a two time survivor of cancer. I also have other family memebers who lived with cancer. One in particular that was first diagnosed with female cancer but after suffering through all the treatments and recurrances, her doctors made her a new bladder out of her small intestine and propped it up with a sea sponge and five years later she died from bone marrow cancer from all the radiation and chemotherapy she received. She did live to see her children grow up, get married and have children but she did not live that whole time she only existed. She did manage to finish her college degree during that time at a local state university but after getting her degree and going to work, she was let go because she had cancer. The employer that let her go was the Catholic Church! They treated her like she had something contagious. How crazy.
No cancer is the good cancer and there is not one person with cancer that escapes it effects. Every year more and more thyroid cancers are diagnosed. The number are going up. They are not going down. I am sure it has to do something with the fact that people are getting more access to medical testing and that is how they are discovered. Most thyroid nodules are not found by being treated for them. They are discovered while being tested for something else like I was and finding them then. Because they are getting tested for these other things, they are finding sooner and more often I think.
So you see, we do not have it easy. We do not have the good cancer. We do not want special treatment. We just want to be heard and be listened to and given the same respect as anyone else and the same as anyother cancer patient/survivor. I think that with more research, they may find out that most of thyroid cancer comes from all the chest X-rays they take like water and all the dental x-rays we experience/experienced every 6 months during our lives. (I think now they have changed how often they take full mouth dental x-rays but they still take some x-rays everytime you go. Until the word gets out and more money is donated in the name of research, we will never find the cause or if this is something that we can prevent like diabetes or heart disease.
I hope after reading these comments on our experiences as thyroid cancer patients/survivors, that the people reading this will go to some of the websites like thyca.org, thyroid.org, or even cancer.org if they have any questions or are experiencing any symptoms that they are curious about. They can also find directions for a neck check at thyca.org if they see or feel somethng they have in their neck that they have been wondering about. I did not know of these sites before I had surgery. I found them only after going to the library and researching the topic in the books on the thyroid. Not the computer.
Jill
Barbara- i am so sorry for all you have had to go through. Your story is a perfect example of how serious this insidious disease can be. Thank you for posting!!
Destomu
Thank you so much for your letter.
Here’s my thyroid cancer journey (papillary, follicular, and tall-cell variant).
DIAGNOSIS-I went to general practitioner for nearly a year and complied with his advice to diet (my only noticeable symptom was weight gain). Eventually, I developed a “lump” under my right ear. It was the size of a large grape. The doctor said, “Don’t worry, it’s nothing”. When I decided to DEMAND to have “nothing” removed, it was the size of a peach pit. The first FNA (fine needle aspiration) verified the fact that I had cancer, but they didn’t tell me until I had a sonogram as well. The sonogram showed cancer all over my neck. The sonogram taker couldn’t tell me anything about what she was seeing. I asked for a doctor, but it was Friday afternoon at a hospital. Once a doctor came in, she said you have cancer and then she left. My mother and I were in tears and no one was there to answer our questions.
TREATMENT-The first doctor appeared to have “shaky” hands so I opted for a second opinion. Luckily, this doctor was VERY skilled. He was an ENT (ear, nose, and throat surgeon with plenty of experience in cosmetic surgery). He also worked closely with the University of Kansas and my first surgery included observations by two doctors in training. It was a little complicated, because I had to have a thoracic surgeon on-call (there was something under my collar bone on the sonogram). My insurance covered my chosen ENT and thoracic surgeon, but it was difficult to find a hospital that was covered by my insurance and that both of my surgeons had operating “rights”. My ENT had to get special permission to perform surgery at a hospital that took the thoracic surgeon and my insurance (I was nervous,because he wouldn’t be familiar with the new hospital and this was my FIRST surgery EVER. When I finally woke up from surgery, I had a breathing tube!!! Someone should have warned me! The cancer had spread more than the sonogram or CT showed. I lost my sternocleidomastoid muscle, jugular vein, my thyroid and multiple positive nodes.
ON-GOING TREATMENT-Well 3 months went by and my RAI scan showed a “cured” person. Next, I had a treatment dose of RAI. I felt a lump in my neck. Yep, surgery and cancer. How could that be? I just had an RAI that said I was “clean”. I did RAI again. This time it showed I was “clean” again. Then I feel a lump. I get surgery. Yep, cancer again. We follow this merry-go-round for about 3 years. I decide that I cannot work full time and keep up this regimen. I tell my family I’m done with RAI and surgery. We visit multiple endocrinologists and one oncologist. The endocrinologist all give the same advice. The oncologist told me to go to an endocrinologist My Mom insists that I cannot give up and that we should study my cancer at the medical library. I read, read, and read some more. FInally, I narrow down my chosen treatment to about 40 articles (written by doctors with years of experience). Next, I have to go to ALL the endocrinologists covered under my insurance. They refuse to give me EBR (the treat recommended in the articles for tall-cell variant unresponsive to RAI). I have articles written by 40 doctors recommending this treatment!!! What do my doctors covered by my medical plan suggest? You got it, more of that useless (for me) RAI. So I head to the internet and find a specialist about a 15 hour drive from home. We immediately head to Kentucky! This specialist writes down that I need EBR. He also gives me the maximum amount of RAI in one treatment determined by dosimetry (checking my blood and urine to see how my body releases the RAI). I do the dosimetry, take the RAI, and yep–no cancer. I head back home and get EBR (specificially IMRT-Intensity modulated radiation therapy). I’m smarter now, so I head to the medical library to read up BEFORE the treatment.
RADIATION-If RAI wasn’t bad enough, it’s time to start IMRT. My endocrinologist that told me it was useless now has a standard of care letter from the doctor in Kentucky and he’s sending me onto the IRMT doctor. I ask many things about the treatment, but mainly about the possibility of losing saliva function. This cute, young, bubbly doctor guarantees me that I will NOT lose saliva function. She says that IMRT is specifically aimed at the problem areas and will NOT be used near my saliva glands. I start treatment. The first of thirty-three doses BURNS OUT MY SALIVA glands. I now have radiation-induced Xerstomia (I could have taken Amifostine-according to what I read in the literature, there was a possibility it could have saved my saliva function). This doctor was against it, because it causes nausea (of course, nausea happened anyway).
LIFE AFTER TREATMENT/RADIATION-Now, I despise doctors and have a hard to believing what they have to say. My Xerstomia is so bad that I can NEVER sleep through the night. I have trouble speaking (I’m a teacher). My throat hurts on a daily basis (I have to talk and need to continue to work, because Xerstomia is not a reason on the disability form). I can no longer sing to the radio in the car. Flying on a plane is a nightmare (it is so dry before take-off and you know how picky they are about asking to bring a water bottle-I’m stuck buying the $6 dollar bottle). My friends are annoyed when stores won’t let my in with my water bottle (I just don’t go to these stores-even if my friends want to). I’m losing my teeth due to absence of saliva in my mouth to protect them (of course, health insurance doesn’t pay for this ramification). I have a hole in my sinus’. My tonsils were burnt out. I frequently get sores in my mouth (caused by the Xerstomia).
“Good Cancer” Thoughts-I would give anything to have my saliva function back. I’d rather give up an arm or a leg. I now have another “invisible” problem that I shouldn’t complain about to others. People think it’s JUST spit. Do you want to be the bride and have to carry water to get through the nuptials? Do you want to be losing your teeth? Do you want to have to get a pill every month that controls nearly everything in your body. Each month I decide do I want to spend hundreds of dollars to pay for Synthroid (one of the least covered medications on my insurance plan), or purchase the cheaper Levothyroxine? I HAVE to purchase the Levothyroxine so I can save my money to pay the dentist even though the Synthroid brand makes me feel better. These are problems I face with every month. The saliva gland problem I deal with every minute of every day and every night and every minute in between.
My rant is over….I wish the after-effects of thyroid cancer could be over, but alas I am blessed to be alive! This was wordy, but I didn’t even include the whole ordeal about the number of surgeries, doctors, CTs, MRIs, sonograms, etc. . Thanks for listening and giving me a chance to complain about the “good cancer” that has robbed so much from me!
Jill
Thank you for sharing this Destomu! Your story is so important for others to hear so that they can truly understand just how much thyroid cancer can completely change your life. My heart really goes out to you for all that you have been through. You are so brave! I hope you are part of the FTPO-Without a Thyroid Group on Facebook so we can support you through all of this. We all need each other!
Steff
Thank you so much!!! I’m 25 years old I now live with among other things recurrent laryngeal nerve paralysis, the nerve was severed and the operation had to stop after only having the left lobe removed, the doctors weren’t worried about the right lobe as the papillary cancer was only in the removed left lobe and surgery to remove the other side could wait as it was a good cancer, well pet scans showed within 6 short months It was all through my lymph nodes in my neck and right lobe, doctors were so surprised that such a great cancer could be aggressive, back in I went for the second operation to remove the right lobe and lymph nodes, the fear of cancer alone was horrible but to fear a second operation with nerve palsy that could leave me with a tracheotomy for the remainder of my life at 23 was beyond words( no trach thank god) it can be so lonely the journey us thyca sufferers go through because I for one am too afraid to whinge or complain in fear of someone looking at me with THAT look on there face that insinuates well thank your lucky stars it wasnt breast or ovarian or all the OTHER cancers which I have been told before my numerous uneducated people, when will people start to learn that this cancer is horrific and destroys lives just like these other cancers do!!! I have been left a shell of my former self on the inside while on the outside put on this brave face like all is well. Living with anxiety like feeling a lump that wasn’t there the week before and holding my breath for ultrasound results or my blood test doesn’t come back great or as you described all the other never ending conditions we are left to deal with, my scar that goes from one side to the other was a horrible visual reminder of what I went and still go through but I have come to use it as something I can educate people with when asked why I have it. Thank you for standing up for us and for someone like myself who doesn’t have a voice ( literally) haha. Thyroid cancer needs more awareness and this Good cancer crap needs to stop no doctor or person has any right to tell someone they have a good cancer. I wish you all the best!!
Jill
Thank you for your kind words, Steff! I was happy to speak out and will continue to do so in order for all of us to be heard! I hope you are doing well, and so appreciate your post!
Brenda Shelton
I was diagnosed on June 17, 2013. My 40th birthday. My celebration consisted of me, my husband and my endocrinologist whom I’d only met once before, in an exam room. Followed by a 3 minute drive home to tell my then 15 yr old daughter, the news. A week later I was in my surgeon’s office discussing surgery. Although my Endocrinologist didn’t treat me like “it’s no big deal” my surgeon seemed to take this diagnosis much more seriously and I am grateful to him for that! I had a 1cm encapsulated nodule with metastasis to 26 lymph nodes. After surgery the surgeon told me he’s personally only had one other case similar to mine and that he was surprised at the metastasis given the nodule was small and encapsulated. He also had to remove 2 parathyroid glands because they were diseased and the remaining 2 do not work anymore leaving me with hypoparathyroidism. I have since had a recurrence in lymph nodes.
Prior to my diagnosis (at age 25) I had a complete hysterectomy and had later been diagnosed with osteoporosis for which I was taking Boniva with success. The osteoporosis had improved to osteopenia. Because of the hypoparathyroidism I can no longer take Boniva and am at risk of my bone density decreasing. My daily medication now consists of Estrogen, Synthroid, Calcitriol (twice per day), and 3,000 mg of calcium (6 pills spread throughout the day) per day. I still have symptoms of hypocalcimia. I have no energy or motivation, I’m irritable and short tempered. I have hot flashes and night sweats which were previously controlled with Estrogen, decreased libido and a multitude of other symptoms since having Thyroid Cancer. I never tell my friends or family how I am REALLY feeling because I don’t want to complain.
Jill, thank you for writing this article and helping bring our type of cancer to light.
Jill
Brenda, it was my honor to do it! As your story shows, thyroid cancer has far reaching consequences to so many aspects of our lives, and needs to be taken more seriously! Thank you for sharing this!
Marlys Derksen
Finally some good information about thyroid cancer. I had half a lobe removed in 2005 and have been searching for some good info since last spring. Though I never had to undergo the radioactive iodine treatment, I was certainly told I had the best kind of cancer and just take the little pill- the benign little pill that closely mimics natural thyroid and has no side effects. The little pill that the doctors “thought” would lower the chance of cancer returning to the area, and since it was cheap and so benign I should just go ahead and take it for the rest of my life. It’s hard not to be bitter.
Jill
I don’t blame you for feeling bitter. Many thyroid patients are put in the same situation, and it is so unfair. We all deserve better care and treatment from doctors. Wishing you well!
Yvonne
Jill, your letter was amazing — the only word I can think of to describe it is “nuclear”! You told it like it is — you shared so many painful details of what it’s like to live with thyroid cancer, that only a fool would continue to say it’s an easy cancer. Thank you for caring enough about the thyca community to write that letter. Janie, thank you as well, for featuring Jill’s letter in your blog. Knowledge saves lives; you are both heroes.
Jill
Thank you Yvonne! I am glad you liked it. I just hope it puts a face on what so many of us go through. Wishing you well!
Melissa Abed
So sick and tired of hearing, “if you’re going to have cancer, Thyca is the best one to have!” Someone please explain this statement not only to me but my entire family who all suffer daily with this horrible disease! My husband, diagnosed with papillary carcinoma at the age of 34, had thyroidectomy/I-131, at that time. Within a yr, cancer returned to lymph nodes, repeat surgery/I-131. Then again the following yrs with a total of 3 rounds of I-131, and numerous surgeries over the last 10-15 years. Now realizing that I-131 never worked to begin with and probably did more harm that good. He was diagnosed 3 yrs ago with T-cell lymphoma, a secondary cancer. In the meantime, 4 yrs ago, my 16 yr old daughter was diagnosed with papillary Thyca. She too was hit with surgery and a large dose of I-131, but then again, it didn’t work with her either. Within 1 yr her cancer returned to upper right neck in several nodes and she had a radical dissection. Also during her second cancer episode, my then 14 yr old daughter was also diagnosed with the same, thankfully caught in the pre stages, but still had to have thyroidectomy. That entire summer was spent in the hospital with back to back surgeries with my girls. Both spent numerous days in the hospital and returned home with drains sewn into their little necks for 10 more days. Not to mention numerous biopsies, injections, low iodine diets, nerve damage to eye, face paralysis for wks, and medication that they will take the rest of their lives, because it controls every function of their bodies. Please explain this “best cancer” to have! Explain it to a 16 yr old who was in isolation for 8 days because she was radiating cancer, while her other friends are enjoying summer or getting their drivers license. Explain it to a 14 yr old who had to miss basketball camp the entire summer! Explain to them why their hair falls out, why they are tired all the time, depressed, moody, heart palpitations, irregular periods, etc. Most of all please explain it to me, a mother and a wife, that has watched her family fight just to survive! But still, I have to hear ruthless comments about Thyca, you obviously have no idea about cancer! It is what it is! Cancer is cancer! For many years now I have watched as PINK takes over our city during various mths, I have contributed and participated in fund raisers, yet there is nothing for Thyca. Is this because it’s, “the best cancer”??? Don’t get me wrong, I’m not knocking breast cancer, I do support it, but it’s really hard to put another cancer before my own children/husbands cancer. There are way too many cancers out there to focus on just one! So, please tell me again how Thyca is treatable and the best cancer to have, better yet tell my girls who are trying to live normal lives, I must have missed something over the years!
Jill
Melissa, thank you for responding. Your family’s experience with thyroid cancer is exactly why we need to break down the stigma that thyca is a good cancer. There is no such thing, as evidenced by all you have gone through.
Kathy Reder
Thyroid cancer….it is a strange kind of realization. The battle for me was not necessarily the cancer, but, rather, the 20 years of bizarre symptoms that doctors told me I was a hypochondriac, fat and lazy and even cuckoo, you know, depression causing my hypo and hyper symptoms. My thyroid, an extremely important organ, being attacked viciously from an out of control immune system who one day opened up and decided my thyroid must have been transplanted into my body because it wanted it gone! My immune system kept attacking it for the whole 20 years all while I remained in normal TSH levels. My thyroid, in perspective, was truly my Hero. My thyroid fought back hard to keep me within “normal” TSH levels, it fought back hard to not grow BIG giving my immune system the WIN…but…the day did come. My BIG thyroid was just too big. It was compressing my windpipe to the point where the doctor did not know how I could breathe. It was so BiG it was compressing my nerves, my parathyroids and also my artery. My immune system was going for the WIN and I could no longer keep my thyroid. The biopsy did not show cancer, it was only in pathology after my totsl thyroidectomy they discovered my two tumors. Who me? Cancer? No, that word carries a fear no matter how society views how one cancer is better than another. The word cancer is scary, Radioactive iodine is scary. The thought of opening up new cancers is scary. But….all in all, my thyroid is gone, my tissue has all been zapped and I am officially cancer free for the time being. I will forever hold the diagnosis code 193, thyroid cancer. But, the immune system does not stop just because my thyroid is gone…it is lurking and waiting for something else that it may decide is a “foreigner” within my body. I will forever walk cautiously knowing that it is not over….the journey of future autoimmune attacks and future cancers opening up will forever be with me. There is no “easy” cancer….there is no “easy” autoimmune disease…we walk a journey I hope few will ever have to journey. But, for me, I will fight the medical stigma that this journey is fixed with a little pill….it’s not….we fight everyday for Life as we once knew it. Gone are those days forever, but, we can educate doctors and bring them to the knowledge we live every day if they are willing to listen to those who walk this walk each day. Thanks for all you do STTM.
Jill
Kathy, thank you for sharing your experience! I agree, we need to do more to educate the medical community and raise awareness. STTM is a great resource that not enough use. I hope we can use our stories to make this happen!
Jane
Your testimony regarding women being labeled, essentially, “nuts,” when there are symptoms, is of great value, as is your genuine voice, if you will, in getting through it.
Michelle Dube Hare
Jill, you are an amazing advocate. Can you recommend an organization to send donations to in order fund research for thyroid cancer?
Jill
Hi Michelle! Thank you so much! Right now, I am working with a few others to try and form an organization for research and to help thyroid cancer patients deal with treatment. But for now, the Light of Life Foundation is the best organization to donate to. http://www.lightoflifefoundation.org/ Thank you!
Heather
I am 40 years old and am 15 months post total thyroidectomy and radioactive iodine treatment. My hair continues to fall out, my teeth are crumbling, the brain fog is unreal and I battle with depression and anxiety on a daily basis. My 9 year old son just told me a couple of weeks ago that he misses the mom he had before she got “the cancer” because most of the time I am exhausted. BUT I am still here and so far my markers say I am cancer free. No cancer is easy. Just hearing the words “you have cancer” is heart wrenching. Thank you for sharing our stories.
Jill
Heather, I am sorry you are going through so much right now. I know it isn’t easy. I hope you join the Facebook FTPO-Without A Thyroid group as they can really help you get to the bottom of what is going on, and help you feel better. They have given me a ton of support through my own journey. I hope to see you there soon! Thank you again for your comments!
Diane Hodge
It took over a year to definitively diagnose my thyroid cancer because my tumor grew irregularly (behind the thyroid and along my jawline), my TSH was “normal”, and yet I was diagnosed with Hashimotos. By the time the tumor had grown enough to show up on an ultrasound, it was 3.5 cm. I had surgery and the frozen section confirmed the cancer, but at that point, the surgeon found that the cancer had broken out of the thyroid capsule, had spread to my jaw bone and muscle tissue, wrapped around a vocal nerve, and I had both lymphatic and vascular invasion. I was staged at IVa at the age of 45 and my prognosis was “iffy.” Fortunately, my doctors took my cancer seriously and treated me aggressively with 185mci of RAI, and thankfully I responded well. That was 5 years ago, and while I may feel, look, and function alright, that doesn’t mean it was an easy road to recovery or that it’s an easy daily existence, or that I don’t think about re-occurrence every day. For my recovery, I had to be on a very suppressed dose of synthroid (which causes other issues), 6 months of voice therapy as I lost a vocal nerve, treatment and a scar revision for my skin, crowns and root canals for teeth damage, hormones to treat the early menopause symptoms, tear duct surgery, vision issues, etc. Despite all that, I feel very fortunate to have on-going aggressive monitoring by doctors who took my cancer and recovery seriously, helped to “put me back together”, and encourage me to live with a chronic disease and daily medication because my long term prognosis is now much better. But, it still isn’t easy.
Jill
It is definitely not easy to go through all you have gone through. Thank you for sharing your story so we can keep spreading awareness!
Darlene Johnson
Thank you Jill for your article and for all that you do to bring awareness to Thyroid Cancer! Your article/letter has brought tears to my eyes but has also put a smile on my face!! To read your words brings to me a sense of hope, because with people like you out there fighting for our cause, it brings hope that maybe someday Thyroid Cancer will be recognized for the horrible Cancer that it is!! I was diagnosed in 2009 with Papillary Thyroid Cancer. I too was also informed by my surgeon and by my Endocrinologist that if I had to have Cancer this was the kind to have!!! I was also told that I would just have to take a pill a day and I would be fine!!!!! I was not prepared as to what to expect following my total Thyroidectomy and struggled daily with all the symptoms that followed! I thank God everyday for the Thyroid support groups I have found online and I learned so much from you all!
Jill as you stated there are good days and there are bad days, and for some the bad days far outweigh the good! Living without a Thyroid is very difficult and it is time that “people” started recognizing this horrible disease for what it is!!! There is not a day that goes by that I feel that I am functioning at 100% of my old self!! I am a 5 year survivor of Thyroid cancer and my hope is that all our voices are heard, loud and clear!!!
Jill
Thank you Darlene! I really appreciate your kind words, and hope that our voices continue to be heard!
BellyGirl
Thyroid Cancer nearly killed me. i went undiagnosed for years even though I had a huge goiter popping out of my neck. Fine needle aspirations always indicated everything was “normal”. By the time I hired a plastic surgeon to remove it, my thyroid cancer had spread and I ended up having massive surgery. My thyroid cancer was no joke as my surgeon told me I would died from jugular blow out by tne next summer. My scar goes from the back of my head down my neck. I lost my jugular, glands, and even part of the muscles around my clavicle with a neck dissection. I too was given the one little pill, synthroid for many decades which catapulted my life directly to HELL. The T4 only meds only made me worse over time. The hypothyroidism testing and treatment protocols (with or without thyroid cancer) are a complete joke in mainstream medicine today. The TSH test is worthless and we need all the hormones our own thyroids made, not just a storage hormone, like Levo or Synthroid. Thank God for Stop The Thyroid Madness.
Jill
You are absolutely right in everything you said! I am so grateful you finally got the medical attention you needed, and the tools from STTM to get your life back. By telling stories like yours, people will hopefully realize there is no such thing as “good cancer.” Thank you for sharing this!
Marelyn Gross
I did not have thyroid cancer, but did have stage 2 tonsil cancer. I went through radiation (7weeks) on my throat after 2 surgery’s and in the process it is destroying my thyroid. The pain in the left side of my face and neck from the surgery;’s and radiation are constant. Some days I don’t feel I can cope and want to just give up, so I understand everything she says in her letter. I go through that everyday. I am now on Westhroid and I feel much better. Always the fear the cancer will come back. Doctors are no help.
Jill
Marelyn thank you so much for sharing this. So many fail to understand how much radiation can effect us, even years after we have had it- in its many different forms. It is especially frustrating when the doctors stop listening to us, and ignore our concerns. Thankfully, we have each other and the STTM groups for support. I am so glad you are feeling better!
Donna Puzzo
I was diagnosed in 2006 and have been fighting ever since. My thyroid cancer was not found soon enough and has spread to my bones. So I will have this for the rest of my life as I am told it is a slow moving cancer that will never go away. I take 28+ pills a day. Depending on pain rai does not work any more for me. I take a high dose of synthroid and an oral chemo pill. I have had more side effects than I care to mention but will say the most interesting is it turned my hair white. I cant say I have bone cancer, but thyroid cancer in my bones. I try to have a good outlook and live each day as it comes. And I too hate when people tell me oh, you got the easy cancer. And I wear thyroid colors as much as I can and tell anyone who will listen.
Jill
Keep telling them your story, Donna! I am so sorry you have been through so much! So many just do not understand how thyroid cancer can not only spread, but can stay with you for the rest of your life, in one way or another. Thank you for sharing!!!
Sandra
Here is my story, a post from my blog that was easier (yes we like easy!) to just copy and paste. Sorry it is long but it goes to show the extreme direction one’s life takes after the “EASY” cancer.
It reads,
If you’ve read my profile then you know that my hope is, that if you are not well and if you identify with my story then maybe you will find an answer sooner than I did.
I found my confidence as a young adult at 18 years old when I discovered the world of bodybuilding. Inspired by the beautiful Rachel Mclish, the first female pro bodybuilder discovered by Joe Weider, I hit the gym for 2 hours a day, 6 days a week for the next 8 years. At 5’2″ and 115lbs I could curl an 80 lb barbell, bench 145 lbs, deadlift 250 lbs, squat 200 lbs and perform giant abdominal sets of 4 exercises, 4 sets each of 30 reps. I followed a strict bodybuilding diet always and my world and life was at Gold’s Gym. As I watched the pro women get more muscular I believed I could get there too. I was a fiercely determined young woman and never, ever was a doubt in my mind that I could not accomplish my goals.
Then I heard about the pro women being on steroids and even though I was disappointed I thought hey, I can do a novice competition, no one does steroids that early. I had never touched a steroid and never would. I trained hard for that competition adding 1 hour cardio to my 2 hour weight workouts while working full time. Then I heard that the two other girls I would compete against who had been training for only a year were on steroids! I was flabergasted that they would do that to themselves. At that point I decided that competition was not for me if it was not going to be on fair grounds. I never competed and was quite happy to do my thing in the gym just for me. Yes I wished I could look as lean and muscular as they did but not at the price you would pay for your health. I never compromised.
Working out gave me so much but I had also missed out on so much in life as well and so I slowed down the workouts and took up running, 5-8 miles a day as I dreamed of becoming a police woman. I could run an 8 minute mile and a half and felt incredible but after failing the written tests realized that police work was not in the cards for me after all.
Then a lump a little smaller than the size of a ping pong ball in my neck was diagnosed as stage 3 papillary thyroid cancer that had spread to 5 of my 8 lymph nodes on the left side of my neck. I was 30 years old and felt completely fine, better than fine, I felt great. What was to be a 5 day hospital stay turned into 6 weeks and I almost died 2 times due to hospital error. If I wasn’t in such great shape to begin with and if it wasn’t for my mom and dad watching over me like a hawk the whole time I would not be here today.
Six weeks later I went home anemic and so weak I could barely walk. They had removed my thyroid, a life giving gland that produces vital hormones and never put me on replacement thyroid hormone for the 6 weeks while I was in the hospital as I still had to go through 3 days of hospital isolation with radioactive iodine treatment. After RAI was over I saw a endocrinologist who finally gave me a prescription for what I now call SYNTHCRAP, synthetic thyroid hormone. I eventually recovered enough to go back to my job as an assistant manager in a high end health club but never did I ever feel the same both physically and emotionally. After a while I asked my doctor why I don’t feel like I used to and she said, “you had cancer, you never will be the same”.
I BELIEVED WHAT SHE SAID WAS MY NEW REALITY AND JUST ACCEPTED IT, THE BIGGEST MISTAKE I EVER MADE!
Don’t get me wrong, I lived my life, I just never went back to running as far or working out as hard and I also had many emotional ups and downs that I had never had before.
Fast forward to 6 years ago at 40 years old and slowly things were starting to change and get worse. I had always been a happy, gregarious, fiesty individual and I found my self coming home from work exhausted with headaches, depressed and not wanting to see or talk to anyone. I had developed food sensitivities, dairy first, then wheat and so I got tested and discovered a whack of foods I had to stay away from including sugar. I changed my diet and it helped but then I started to experience extreme fatigue, was freezing and wearing flannel pj’s to bed in the summer time, had joint pain in my knees, hips and fingers and even a flight of stairs or walking up a slight hill became a challenge for me and left me exhausted at the top! I had never gained any weight and yet I had fatigue as if I had gained 100 lbs! My healthy glow was gone and I had developed dark circles under my eyes that were puffy too and the colour of my face became almost jaundice and blotchy. My once thick hair was falling out and I could hardly keep it in a pony tail it was so thin and my eyebrows were thinning to nothing on the ends. A 40 hour work week left me so exhausted that getting my groceries, house cleaning and laundry done on the weekend was next to impossible. I could not even find the energy to get together with family. I had also developed chemical sensitivities that left me sick if I had a customer come in to my work who was wearing perfume. Our home became a chemical free home, just vinegar and baking soda for cleaning and all natural products with no perfume and we switched to organic foods whenever we could. All the while every yearly physical my doctor reported me to be in good health. What a crock! My poor honey wondered what had happened to his once life loving woman and I wondered too. Through it all he was my rock and I don’t know what I would have done without him.
We had lined the pockets of 5 different naturopaths ( I was fortunate to finally find one who was my saving grace, Brenda Leite of Sunleite Integrated Health Clinic who told me she thought it was a hormonal issue and referred me to my current M.D.) with thousands of dollars looking for answers. I cleansed, chelated heavy metals, juiced, became a vegetarian for a summer along with being gluten, dairy, sugar free and still no difference. Friends and family never understood when I told them that if I ate something wrong I would be so sick the next day like a truck had run over me and I felt so completely and utterly alone. How had I become such a weak, tired, sick person? I felt like a shell of a human being and with tears streaming down my face I watched the world go by outside my window, living the life I wanted to live again but just didn’t know how that was ever going to happen.
Then one day about I came upon Janie Bowthorpe’s website
https://stopthethyroidmadness.com/
and I remember the feeling of both shock and an overwhelming feeling of hope as there were so many woman and some men who were all experiencing the same debilitating symptoms I was and the reason was SYNTHETIC THYROID HORMONE. For the very first time I read about NATURAL THYROID HORMONE and and was soon in my M.D.’s office asking her to give it to me instead of the synthcrap she had me on all along. She said she could not as she knew nothing about it and could also get in trouble with her medical board for switching me. LOAD OF HOOEY!
I have now been on Erfa’s natural dessicated thyroid since last February from my bioidentical hormone specialist M.D. I have tested my adrenals with saliva testing and after finding that I was in severe adrenal insufficiency have been treating my adrenals with hydrocortisone. One of the first things to change was my joint pain and then going up the stairs became easier. My digestion is getting better and I have experienced some pretty awesome days and I no longer freeze my buns off when it is 80 degrees outside. I still can’t go for long walks without paying the price of exhaustion and I have had and will still have some ups and downs and so I realize it is going to take a while for me to get back to where I was but I have faith I will get there just as many others have after making the switch and treating the other serious imbalances that occur from being hypothyroid for years and years (from being on synthetic thyroid hormone).
Along with not having children, I have missed out on many things in life unnecessarily and my sister and mother have also suffered the same fate but as I am getting better I am letting go of my anger of not being able to change what has happened so that I can live in the present and cherish all the good moments of my life now. Perhaps what has happened to me will help you just as the pain and struggle of what others have gone through has helped me. If through the amazing world of blogging the word about natural thyroid gets out enough THEN MAYBE one day no one will have to suffer this way. Everyone knows a woman who is on thyroid medication and so we as women must take a stand and change what is happening to us.
Without our good health we have nothing and so we must not ever take it for granted. You know your own body better than anyone else including any doctor so if you are not getting the answers you need, do not give up!
A special hug and big thank you from the bottom of my heart to Darla, Sam, Valerie, Diane and Stephanie from the thyroidless, adrenal and iodine groups who have given me such unconditional support and guidance and to Janie Bowthorpe who I believe has saved my life to whom I am eternally grateful.
Jill
Your story truly resonates with me, and so many others. Thank you for sharing! I am so glad you found STTM and it has helped you reclaim your life. It is truly inspiring for the rest of us!
Trista Scott
I had my thyroid removed a year ago on January 13th. The Cindy finch article got me extremely upset and I had emailed her. I’m doing suppression therapy which means my body needs to stay hyper instead of hypo. I’m fine with that since it means I don’t have to miss a day with my kids. I’m not just one pill dependant, that one pill has caused me heart problems there is heart medication I’m calcium and vitamin d dependant. It really hurts me when someone says that thyroid cancer is an say fix or the “good cancer” I wish everyone woul understand cancer is cancer no one is better than another. I’m only 22 diagnosed at 21. I have 4 children under the age of 6. It’s not easy there are days I just break down and cry that I can’t get up and do what needs done. I had a new baby in November of 2014 my doctors were amazed, since the thyroid is hormones I had been told my levels made it impossible for me to have more children, he is my miracle baby. No one understands that either if your thyroid levels go off you could not beable to have children or have a miscarriage. #educate
Jill
Amen to that Trista! I hope that by sharing out stories, we can continue to spread awareness and hopefully, thyroid cancer patients will start to get the support they need. Thank you for sharing your story!
Cathi Gross
That makes me upset. I watched a friend die for Thyroid Cancer. He had it twice the first time they took his thyroid to rid him of the cancer along with Radiation. And a few years later the cancer return even know he had NO Thyroid left. It killed him last year. Thyroid cancer is NO Laughing matter. My friend suffered. And it was hard to watch.
Jill
I am so sorry for your loss. Thyroid cancer has taken too many wonderful people from this world. I truly hope we can keep raising awareness so that we can get better treatment especially for those with RAI resistant forms of cancer.
Sharlea
I was 25 years old when my neck swelled so bad that people were asking me what was wrong. I went to the Dr, and they found a goiter. After my first biopsy, which showed possible papillary carcinoma, they decided to do surgery. My doctor told to my husband after my thyroidectomy that everything looked great – no concern. So when my 1 week post-op check up came along, I decided I would go by myself, after all, I didn’t have cancer, right?! I was completely devastated when my doctor flippantly told me “Oh, you have cancer.” As it turns out, my surgery was not fine. I had 4 goiters on my thyroid, and multipule other lymph nodes removed.
After I had my RAI done, they did my whole body scan to check for any other possible metastasis. My scan came back clean. Three months later, when I had my PET scan done, it showed a 5cm tumor located above my clavicle. I was shocked.
Needless to say, we found a better hospital. I had the tumor removed, along with more positive lymph nodes. And three months later, another positive PET scan. My last surgery was this past December, and another high dose of radiation is scheduled for next month.
So let me tell you about how ‘easy’ it has been having Thyroid Cancer. After all the treatments, which have caused numerous problems and months away from my young children, I still have to worry about not IF, but WHEN my cancer will pop back up. I will admit that I’m jealous of the cancer patients who one day get to say they are in remission. I’m 26 years old, I will have cancer for the rest of my life.
Jill
Thank you for sharing your story, Sharlea! You are incredible having had to go through all you have at 26! I hope stories like yours are heard, and serves as a wake up call to the medical community that thyroid cancer needs to be taken much more seriously, and we need more treatment options.
Peg
My story is similar to yours. I had a large nodule appear virtually overnight! I went to my PCP and he said let’s watch it for 6 months. I ABSOLUTELY was no good with that. I then went to an ENT. She also said its probably nothing but I INSISTED they do something that I was NOT waiting. She did a fine needle biopsy. I waited about a week and she said that half of your thyroid needs to be removed. Went in had my surgery went home with a tube in my neck. They told my husband everything looked great, will see you in a week. I did have my husband with me and I about fainted when she told me you have cancer. I had to have a second surgery to remove the second half. I struggle every single day with exhaustion and joint pain, and depression. My surgeon also said this is the best cancer to have if you have to have it. Unfortunately telling my husband that he doesn’t understand how I feel nor do my friends.
Damian Hinman
Thank you Jill for your article and all of you for your input… Has anyone else been following the good news? Several recent studies indicate that there is an epidemic of thyroid cancer (particularly papillary carcinoma) overdiagnoses and treatments. Dartmouth Professor of Medicine, Gilbert Welch and Mayo Clinic Researcher, Juan Brito are two of the leading researchers. See the links below to their work. Both researchers suggest that overzealous diagnoses is causing many to go through unnecessary treatments, similar to other previously overdiagnosed cancers, including prostate and breast. Dr. Brito suggests that papillary carcinoma should be renamed to papillary lesions of indolent course (PLIC). Again, please read the links below. What do you think?
http://www.nytimes.com/2014/11/06/opinion/an-epidemic-of-thyroid-cancer.html?ref=opinion&_r=0
http://bottomlinehealth.com/thyroid-cancer-an-epidemic-of-disease-or-overdiagnosis/
Jill
Hi Damian! I agree, thyroid cancer is most certainly on the rise. However, I believe it should be up to the individual patient and their doctor to decide the course of treatment. Unfortunately, the diagnostic tools available are not that great as evidenced by what many thyroid patients go through! In my own case, I had two tumors and 8 needle biopsies could not confirm one way or the other if I had cancer. Had I just watched it- my disease would have spread as Hurthle Cell can be very aggressive. I am beyond thankful that I had surgery to remove my tumors, because that was the only way we could confirm if I did have cancer- and I ended up with two forms. With most patients, I find that they want their thyroids removed when there is any form of thyroid cancer, no matter how small the tumor might be, because of the threat that it could spread. This is threat we all face. So, I hope that we continue to get better diagnostic tools so patients, with their doctors, can make the best decision as to their treatment, including whether to even have surgery (especially in cases like yours), RAI, and what their follow up care should be (ie. Natural Desiccated Thyroid v. Snythroid etc). Let’s hope the word continues to get out for all of us!
Diane Hodge
That is exactly my thoughts. If there are too many “false positives” then, like other cancers, let’s work on better diagnostic testing. Doctors should not just say it’s “over diagnosed” and ignore it. My cancer wasn’t finally, definitively diagnosed until a frozen section was done during surgery and by that point, it had spread.
Laurel
Thank you Jill and Jamie Lee Frey for advocating for all of us. I too, wrote to the author of the article with the appalling statements about thyca. I also received her apology and request for a two paragraph description of what it’s like to live with thyroid cancer. First, I did not want her to be our voice and second, two paragraphs- not possible. So again, thank you for this gritty and eloquent description of the struggles we face and how the marginalization and trivialization of this disease effects us day in and day out.
Jill
Thank you, Laurel! I totally agree with you! We do not need anyone to tell our stories for us- especially someone who wrote what Cindy did. She can’t possibly know what we go through. Please keep telling your story, and hopefully we can change the way the world views our cancer.
Claire
I had my healthy thyroid cut out and thrown in the bin because of suspicious nodules ? No cancer : then dr put me on a pill a day will be all you need it is thyroxine which does not work 😡 and only causes more problems my doctor or surgeon never fully explained exactly what the thyroid does it is only now that I’ve learnt it controls everything in your body and I’m angry on top of all the other things that
are happening to my body 😖
Jill
I am so sorry that happened to you! You have every right to be angry! I know that for me, finding STTM has helped me to get my life back as much as possible now that I don’t have a thyroid. We often have to be our own advocates because doctors do not always listen. STTM gave me the tools to do just that. I hope it helps you as well!
Nola Spicer
I am so grateful for this…I had my thyroid removed 5 years ago. I had hypothyroidism for 4 years before my thyroid started to enlarge, causing problems with my trachea and voicebox. I had previously been told I had a nodule, which could not be biopsied of the location of the nodule. They would have had to pass the needle through my juggler vein and caratoid (sp?) artery. The endocrinologist said it would require major surgery just to biopsy. He said the risk of cancer was extremely low and thyroid cancer had a minimal death rate
They removed my thyroid dud to the breathing and speech problems. I was told by the surgeon they did a frozen cross and no cancer. The next afternoon, after I was released from the hospital, everything started going numb. My Calcium levels were plummeting. My surgeon was out of state by then..actually had left for a trip to Scotland. His associate had me come in and they checked my levels, which continued to sink. Started on Calcitrol and was told to eat 6 Tums every 15 minutes. Still kept plummeting. My surgeon called me from Scotland and made arrangements to have my Endocrinologist take over…still pumping me with Calcitrol and Tums. The next morning I was in the Endocrinologist ‘ s office…by then my muscles were spasming and it affected my ability to walk to walk. The Endocrinologist looked at me and said ” you have cancer”. They could not ever do the radiation because they could not take me off any of my meds, they couldn’t figure out what was wrong. Started on massive doses of Calcium and potentially fatal doses of Calcitrol. ..which were increased. Hospitalized with PICC line because my calcium was below 5. Accused by my Endocrinologist of not taking my medications because I did not want to go back to work. Changed right then and there. New one took one look at me, called in 3 other associates who examined me for 2 hours, sent me to a Neurologist, who did 23 blood tests, 4 MRIs and a Nerve Conduction test. By then I was unable to walk. The radiologist took one look at me when I can in for my first MRI and said she thought I had rapid onset MS just by how I was “walking” & hands and fingers “seizing”. Nothing…finally realized that my parathyroid no longer worked. I have hypocalcaemia, hypothyroidism. The day I had my nerve conduction test, one particular jolt (they basically taze you all over, then poke long needles in your hand, arm, under your arm about 10 times to see what the electrodes attached to you pick up) caused such horrific pain that I cried out. Within 2 hours I had lost the ability to speak. I know that the test damaged the pathway from my brain. Your parathyroid are what metabolize your calcium. Calcium is what causes your nerves to speak to each other. Impulses from my brain were damaged in my speech, walking, body thermostat. …does not work now…lost my ability to do many things. Still have never been able to have the radiation. ..taking me off my plethora of medications would be fatal. Been hospitalized in ICU several times because calcium levels are not regulated. I lost my job because I could not walk or talk for over a year…can not work ad I am under am electric blanket most of the day for 9 months of the year to artificially keep my body temp up to 96*. The 3 other months, I go from freezing (100* outside) to becoming so hot, I have to lay in a cold tub of water to lower by body temperature. I have been a single parent of 5 children for over 20 years. Put myself and 3 of my 5 through college. Finally able to relax and support myself without having to fight time and again for child support due from my physically abusive ex, and then this hit!!!! I know there are worse complications and some days I do feel very blessed but others, I am wanting to scream, shout, curse and cry due to the pain and complications. Thyroid cancer is not easy. Once that mini computer crashes and dies, life is not easy…
Jill
Thank you for sharing your story- which really demonstrates the ups and downs we go through. I hope your good days start to outnumber your bad days!! Your kids are lucky to have such a strong role model!
Jane
If you still visit this forum, would you forego the biopsy. Your situation is more than the usual challenge. I have no support system, and with ultrasound findings, (which are, of course, not conclusive), and other life and health circumstances, doubt, very much that I want to get on this treadmill. Of course, the alternative may be too early and too finite.
Cheryl
I was diagnosed in early 2011, after a painful needle being poked into my neck to get tissue for a biopsy. When the results came in, I was devastated to hear that I had cancer. Even though the doctor said this cancer has the best survival rate, it still affects you emotionally. I went in to the hospital to have surgery on July 13, 2011 to have my entire thyroid removed. I had to stay overnight with a drain in my neck. Surgeon said he believe he got all the cancer out when he took out my thyroid. I was suppose to get thyrogen shot, but then there was a shortage of thyrogen during that time, so I never got to receive it because by the time they got their shipment in of it, i was past the time allotted to be able to get the shot to ensure the cancer was all gone. So far, by the grace of God, with every visit to my endocrinologist my cancer level in my blood work is pretty much non-existent so far. But the real struggle is still going on: will the cancer come back? i live with that fear every day. also, it will be 4 years this summer since having my thyroid removed and since it had been removed, i have gained about 100 lbs, i am always tired, i go back and forth from being to being cold all the time and it is usually within seconds most of the time, and i still think my “tiny little pill” that i must take every day to stay alive is still not at the right dosage for me. and what happens if my pharmacy runs out of the particular pill i have to take to keep me alive? what then? i don’t have any kind of back up to keep me alive. I live with these fears every day. I live with the fear that my children will get this horrible cancer. I lost my mom to breast cancer 4 days after my 24th birthdays. If there ever became a shortage of medication that I take to keep me alive, then my children could lose me. So in conclusion, it is hell to go through this, and even live with the fears of running out of medication that keeps me alive, fear that my children will get cancer, most of all the fear that the cancer will return.
Jill
Thank you for sharing this!!! The fear of cancer returning is something we unfortunately have to live with. It’s the emotional scar that no one can see, and unless you have been there, it’s hard to understand. I try to just stay positive and not think about it too much because otherwise it gets too stressful. I hope you are doing well, and have continued good health!!!
Lynn
Thyroid treatment in general is dismissed by MANY doctors and we in this community must advocate for ourselves. I devour everything that I can find about my Hashimotos, but have never had an ultrasound to see what’s actually happening in there, but will try to schedule an appointment with someone soon to get my baseline, even though I’m sure I’ll hear about my “T3 only” treatment as being the wrong one for me. I pay out of pocket to a “no insurance” doctor to get the T3 only treatment, and it’s working for me. I dread dealing with the negativity so have put it off, because I’ll have to go through my insurance to an endo at UCLA. Just watching the recent documentary on Roger Ebert titled “Life Itself” shows you the suffering one can go through. It is such a statement about how our medical world works here in Obamacare land, bought and paid for by big pharma. The one big symptom that most have is fatigue, which makes it even harder to learn about because you’re so tired all the time, to get the correct treatment, etc. The media shows Sofia Vergara, or Brooke Burke as the symbols of this “easy” cancer, which really bothers me. I’m sure there are actors out there who are suffering but afraid to speak up because they will lose roles, even though we need to hear from them. I feel for all of you, STTM is here for you, and those with this disease understand you.
Jill
Thank you! Who knows what Sofia or Brooke go through. But one thing we all know is that that living without a thyroid for WHATEVER reason is a struggle. I feel for you too and hope you keep fighting to get the care you deserve (ultrasound included)!
LJ
My mom is in her 70’s and was just diagnosed with Hurtle Cell Carcinoma. She just had her thyroid removed. The surgeon told her that she is fortunate….if you are to get cancer, thyroid cancer is the best one to get, because its curable and treatable. I have read about Hurtle Cell and I am worried for her. It says the older you are and depending on the size of the tumor it can be aggressive. Her surgeon told her that after about 3 weeks she’s going to feel like she’s hit a brick wall, well she’ll have a few more weeks before she goes through the nuclear iodine treatment. Her surgeon says now they don’t put you in the hospital anymore and you just go in a room, drink the liquid and your done. He’s got her thinking its all hunkydorey. I am a cancer survivor myself, I don’t take any cancer lightly. I tried to get her a second opinion and she chose not to, because the doctor is confident that once she had her thyroid out, and goes through her treatment all will be good, and no oncologist necessary. I wanted to verify what he said with a second opinion with specialist in that field and he has her thinking she’s perfectly fine. When he came out from the OR to talk with us….he said it was BIG (the tumor)! We don’t even know how long she had the mass. It has been 5 months now since she had the original biopsy. I’m afraid for her. Is there any advice you can offer me??
Jill
LJ- I am so sorry your mom has Hurthle as well. What I have learned from my own journey is that you have to be your own advocate and fight to get the answers you need before making any decisions. If you are at all concerned with the advice you have received, demand a second opinion! I have also realized that I will drive myself nuts if I continue to read everything online about Hurthle. It can be scary, but please know that there are many who do very well after treatment for Hurthle. I had surgery, RAI, and now I am monitored and my TSH will be suppressed for the rest of my life. It took a while to get to where I am now, but I am doing much better. Try to stay positive, and know that there is a ton of support for both you and your Mom within the STTM community. Wishing you and your mom well!!
Robyn
I really wish she’d get a second opinion. You’re right that Hurthle cell cancer can be more aggressive. And often, it is resistant to RAI. I have papillary and hurthle cell and am RAI resistant. And if she’s resistant, the treatment can do more harm that good in the form of salivary and tear duct damage. I’d look for a doctor who understands how complex this disease can be, especially for more “mature” patients.
Jessica sherer
Hi I know this is an old post, but I came across it when researching hurtle cell. I had a biopsy done 2 weeks ago and it came back suspicious for hurtle cell. I have been an emotional wreck, after everything I have read about it. I was just wondering how everything went with your mother. Thank u!
Jill
Linda- Thank you for your kind words. You have definitely not had an easy road, especially with hypoparathyroidism. Thank you for being an inspiration to the rest of us as a 50 year thyca survivor!!
Jackie Vernier
Cindy’s article made my stomach turn, how dare she belittle my cancer journey in honor of her own. I was diagnosed at 22, with stage three papillary carcinoma thyroid cancer in 2010. I had my thyroid removed, as well as multiple neck lymph nodes. I have had two high doses of radio active iodine, I have yet to be cancer free in 6 years, since diagnosis. My team just found a cancer regrowth in my neck lymph nodes that requires surgery next month. I have never felt the same since that amazing little organ was removed. I don’t think people fully understand how important that little organ in their neck is, I didn’t until it was gone. A horomone medication does not replace what a thyroid does. My hair is thin and brittle, I’ve never had so many cavities in my life before radio active iodine. I feel like a horrible mom because, sometimes find it difficult to keep up with my toddlers while playing. I’m 27 years old, I shouldn’t feel this way. I feel robbed of my energy at such a young age! I dread ever having to do another round of RAI, it makes me feel like I’ve been hit by a truck, my saliva glands feel like they’re going to burst. I loose my ability to taste anything for a month or longer. Just because, I may not look sick, doesn’t mean I’m not. It’s hurtful when our cancer is downplayed. Thyroid cancer is the second most expensive cancer, due to frequent monitoring and testing. It’s reoccurrence rate is extremely high. Everytime I do RAI, I risk getting a more aggressive form of cancer. Such as leukemia and bladder cancer. I recently resigned from my job as a foster care worker for the State of Michigan to get my health in order. It was extremely hard, as I went to college for 6 years and obtained two college degrees to get that career. I would never ever belittle someone else’s cancer journey because, I am angry about my own. There is no such thing as a “good” or “easy” cancer. Which ever doctor started calling it that needs to get punched in his/her thyroid. I pray that after this second neck surgery I can finally say I’m cancer free.
Jill
Thank you for sharing your story, Jackie! I agree, I would love to find that doctor as well, and I’d be glad to hold him/her down for you so you could take a shot! I hope your surgery goes well, and you are cancer free! Please keep telling your story!!
Dawn Barajas
Jackie I will pray for you and all who suffer from thyroid cancer. I’ve had hypothyroidism since childhood and it disgusts me when people look at me when I tell them my illness like it only exists in my head. The world needs to know how thyroid cancer patients suffer and how anyone with thyroid disease suffers daily. You will be in my thoughts and prayers daily.
Jathy
Oh Jackie I am so very sorry. I was 48 when I was diagnosed and it was nothing but grief and misery since. Three days ago, my only child and 23 year old daughter,who has had Hashimoto’s diagnosed in 2009, was diagnosed with papillary thyroid cancer! I am besides myself with worry! We meet he surgeon on October 31 and OMG WE NEED EVERYONES PRAYERS!
Jessica
I more than feel your pain. I was diagnosed when I was 26, with three toddlers in tote. I had a full thyroidectomy, followed by RIA for some time. I moved from one state to the next. My new doctors told me I am fine since I was treated with RIA and gave me a year supply of Synthroid. They did that for four years. I am now with a new medical practice, and 37 years old, and when they heard my history of thyroid cancer they immediately did a full blood panel and ultrasound. Needless to say I have new growths in my neck, my TSH hit 52, and my Tg and TgAB are both significantly high. I have also been very ill for several months and feel like the worst mother on the world. Just remember, it\’s not your fault, you are fighting cancer. There is no such thing as a good or easy cancer.
Your sister in survival,
Jess
Linda Donaldson
On march 25, I will be a 50 year thyroid cancer survivor. It has been anything but “easy”. My doctor said “If you have to get cancer, thyroid cancer is the good kind”. What? NO cancer is “good cancer”! Thyca is survivable if caught early and treated, but it is anything but easy. I have the complication of hypoparathyroidism (low blood calcium) which is more difficult to manage than diabetes. Thank you Jill, for writing this eloquent letter.
Roz
I am in the FB group with Jill. As I commented to her, Thyca awareness month is September but you wouldn’t know it and then before its even over everything is “pink” for October & mustaches for November. Today is the last day of Thyroid awareness month & it barely gets any press–ironic that her article hit the fan yesterday. This past October was the first time I had to live with all the pink after having a cancer myself. It is great that breast cancer has so much awareness but there needs to be more for Thyca, as its obvious how many misconceptions there are, if people are even aware they have a thyroid or that it can be cancerous–and if they do know, they know its a “good” cancer. I haven’t found that having Thyca has been any good for me; no cancer is good, thank you very much. In a strange way, this woman’s article may actually help the Thyca/thyroid disease message get out there with her not so kind remarks.
Jill
I wholeheartedly agree with you Roz. Let’s hope the word gets out so thyca can get the attention it so desperately needs and deserves.