Thyroid Cancer Patients in Retrospect: A compilation of changes they would have made
(Important note: STTM is an information-only site based on what many patients have reported or learned in their treatment. Please work with your doctor. The information on these pages is not meant to replace that relationship or guidance, and you agree to that by reading this website. See the Disclaimer.)
This is a powerful list.
The answers are based on one question asked of thyroid cancer patients in the Facebook FTPO Thyca patients-only support and discussion group: .
If you could change one thing in your entire thyroid cancer journey, what would it be and why?
And whether you are dealing with thyroid cancer or not, you will be inspired by the EMPOWERMENT they wish they had had in retrospect, and which you can have now.
Now granted, not everyone reading this will agree with all answers, nor is this to say you should. You will see some wish they had never had their thyroid taken out, while some are very glad they did. Cancer is serious and should never be taken lightly! So each person has to decide what is right for them in their own situation and in working with a doctor they trust.
But it won’t take away how compelling all of the below is to create further thought, discussion and your own empowerment in dealing with your thyroid cancer as well as in working with your doctor.
- I wish I had known to advocate for myself regarding my treatment; the doctor is not always right.
- I wish I had doctors that had knowledge about thyroid disease instead of relying solely on the TSH.
- I would not have had surgery and healed my thyroid.
- I would have liked to have known in advance about my treatment options. Knowing all the details when I am the sickest I have ever been and least cognitively aware I have ever been is frightening!
- I wish weight loss had come easier after surgery.
- I would have kept my thyroid and taken my chances!!
- Kept my cancer and be happy.
- I’m with those who said to keep my thyroid and heal it!! I would take it back in a heartbeat!! You never know how important it is till its gone!!
- Keep my cancer & have a great life. Take my chances. I don’t even do their cancer checks any more. $5000!! I don’t want to pay that. I would rather go on vacation!
- I would have gone to MD Anderson on day one.
- I would have waited till the hashi’s killed my thyroid off. Then I wish like HECK that doctors had put me straight on NDT. Wish I’d known much sooner I could order NDT online. And WISH I’d found the Facebook Thyca group of lifesavers much sooner!!!
- I wish I had doctors who listen to your symptoms and not treat with levothyroxine only.
- I wish I had found a knowledgeable doctor before it was too late to save my thyroid. The cancer was secondary to what the Hashimoto’s did to my thyroid.
- I wish I would’ve found it earlier. My PCM kept giving me depression medication and saying I was fat. Went to an allergy doctor and that is who sent me to an ENT and the process began. Why; if only doctors would listen to us, it would prevent a lot of needless suffering! Doctors, please remember why you went into this profession.
- I would not have been scared into removing my thyroid because of cancer. I would have gotten 3, 10, 50 opinions. I only wish I knew then what I knew now about reversing autoimmune disease and alternative cancer treatments.
- We would have asked more questions before the TT(total thyroidectomy). My husband now has permanent hypoparathyroidism and permanent complications from RAI that we were never told were even a possibility.
- For my cancer to have been found earlier. Having it for at least 10 years before found took it’s toll. Long time to not have a working thyroid. Regardless, I feel blessed!! 🙂
- I would have learned every thing about it, had the DNA test, learned about my MTHFR and the Snps I have and try to understand them ALL. If you have good money or good insurance u get good treatment and if ur poor, good luck to you.
- I wouldn’t have had my thyroid removed, would have chosen a better doctor, and educated myself better !!!
- I would have started monitoring and supplementing my iodine intake years ago. It could have potentially saved me from getting thyca.
- I don’t regret having my thyroid removed. It was not working and the cancer had spread to my lymph nodes. It is a lot of work to get healthy, but I had lived a miserable life for years before this. So far I am better than it used to be.
I wish I would have only had the left lobe removed which is the side that had the cancer. That way maybe I’d have somewhat of a normal life. Oh and I would ever never had the I-131 done!
I do wish I would have known so much more and much sooner. If it wasn’t for me, the doctor would have just done ultrasound like he has done the past 10 years and not a biopsy. If I didn’t insist something was wrong, I would have gone more years with the cancer and the doctor saying everything was fine and me feeling like death everyday.
- I was very young and trusting at the time. I wish I had educated myself more about my condition and available treatment, and taken more control of my treatment.
- An educated and informed doctor
- I wish I would have found the FTPO Thyca group, been more knowledgeable and more persistent with my doctors TO LISTEN TO ME AND TO TREAT MY SYMPTOMS! (instead of making me feel like an overweight depressed hypochondriac)
- I wish I had never found out that I had cancer…
- I wish I went for a second opinion BEFORE letting them take the rest of my thyroid out. In my case, it didnt spread and I could have kept my right lobe. Instead, I got scared when I heard the big “C” word and listened to the surgeon and had the whole thing removed as per ‘protocol’. When I did go for my second opinion at Sloan Kettering, I was told I did not need surgery #2 and #3 and would have still had my own partial functioning thyroid. Also, finding the FTPO Thyca group sooner would have led to feeling better sooner.
- I would have never had the surgery. I would have never gotten on Synthroid. I would have found a different doctor.
- Wish I would have researched alternatives instead of having a TT (total thyroidectomy) and RAI.
- I would never have had the other half of my thyroid removed. There was no Cancer present in it and I would not feel as bad everyday.
- I wish I would’ve asked to be connected to some sort of support group in my area. I felt very alone and no one understood.
- I wish I had been diagnosed far earlier, before the cancer spread, and all the miserable years of undiagnosed sleep apnea from my trachea being compressed.
- I would never have rushed to have my Thyroid removed, knowing now how extremely important it is for so many of the body’s processes. I would have changed my diet completely and given my body time to heal itself.
- We thought my husband’s cancer was just going to be in part of his thyroid. It ended up being in his lymph nodes and chest. So we’re definitely glad it’s out, but we were definitely unprepared for his complications.
- Wish I knew about Stop the Thyroid Madness when I had mine removed 15 yrs ago.
- Wish for doctors who would listen and treat with NDT.
- Patience. I would’ve taken my time, done my homework and wouldn’t have gotten it removed so quickly. My thyroid was doing what it was supposed to do and had I stopped and thought about it, I would’ve done alternative things to get rid of the cancer and keep my thyroid because the past 6 years have been pretty insane. I have learned a lot and am now helping a lot of people who are going through similar things as I did…but it’s a lot to pay!
- Medication. I hate being tired and fatigued.
- I would have paid out of pocket to get my thyroid ultrasound so I would have have been diagnosed earlier. My insurance wouldn’t cover ultrasound & I was sure it was nothing. My thyroid was functioning perfectly but had TT due to cancer spreading to lymph nodes. Wish I hadn’t had to get rid of it because I’m struggling. Despite being on Synthroid & Cytomel.
- I wish I had never treated it. I was denied diagnosis until it was disseminated throughout my body and had over-the-max radiation dosage over 300 mcg. It was my fear of suffocation and the 2 weeks to 2 months to live that panicked me. STOP LEARN THINK.
- I would have fought harder for pre-op labs so we’d know what my “normal” was. It would have given us something to shoot for.
- The doctors and their lack of support and ignorance when treating us. Surgeons – your operating skills may be brilliant, but if you want a patients trust don’t sugar coat the facts. Answer our questions truthfully and explain more about the procedure so that we are clear on what the outcomes could be. Endo’s – listen to your patients and treat them as a whole person, not just a thyroid . Be open to all the evidence that the TSH and thyroxine are not the answers and only treatment available. You are making patients sicker with your ignorance or lack of willingness to listen to what your patients are telling you. Stop ignoring all the evidence available that support what your patients know, but you all seem reluctant to acknowledge. Doctors – support your patients, if you don’t know then educate yourself or refer you patients to a practitioner who does know. Patients – never give up, if you aren’t getting the right help find another endo, doctor, surgeon who will work with and listen to you.
- No I-131
- Try to find a way to test the “good” half of thyroid so I could have kept it and used it.
- I would have started NDT sooner and I would have waited a few months before having my thyroid removed.
- I am one of those that have had a long battle, first diagnosis was at 17 after years of problems. I think the key to everything is to have better education from the start. …
- Nothing really. I had a great team…the only thing maybe would be go on T3 sooner. I feel awesome.
- To not have gone through with the thyroidectomy.
- I wish I’d known there was a chance it was cancer to start with because I may have had the operation sooner. Was told originally that I could have op but was cosmetic so I left it for 8 years. Then had partial thyroidectomy as it had become very large and was deviating my wind pipe. They then found I had a 93mm follicular carcinoma. So I have had to have completion surgery and rai. After a full body scan they have found it’s spread to lungs so I am now awaiting further treatment. I have been told I will have this for life now.
- How to cure thyroid cancer without removal, plus more iodine and diet information to achieve that cure.
- More thyroid cancer awareness and education, and not just from doctors but from a slew of people, nutritionists, doctors and so on about the risks and issues associated with thyroid cancer. I was 22 and had no one. Not one single person in the industry made it a point to educate me on the thyroid what it does and how this would affect me.
- I wouldn’t have listened or believed the many health professionals along the way that put a damper on NDT. This includes 2 ENTs, my first Endo and the many nurses I called to ask about NDT who tried to discourage me about it. I would have insisted and taken NDT from the start – right after my 2 surgeries. Instead I dutifully went on Levo and we know the horrors.
- I would change the fact that I had to go through 10 doctors in 2 years following my TT. I feel so much better on NDT, my hair isn’t falling out, my weight is normal and my energy is better. I can’t stand all these endocrinologists who go by labs only. I actually had a doc that told me he didn’t care how I felt, we were dosing based off the labs. It’s extremely frustrating and expensive to switch from doc to doc. I wish STTM was the protocol for all thyroid patients. It opened my eyes to how messed up our Healthcare system really is.
IMPORTANT NOTE: though some patients above stated they would have rather not had their thyroid taken out, that does NOT mean you shouldn’t. Cancer is a bad thing, and some may NEED to have theirs out. Use wisdom for YOU and in working with your doctor.
** Read why thyroid cancer patients can, in fact, consider natural desiccated thyroid in their post-removal treatment: //www.stopthethyroidmadness.com/thyroid-cancer-and-ndt/
** More Words of Wisdom from Thyroid Cancer patients–a good followup to this page!
** Thyroid cancer is an “easy” cancer?? Heck no!!
** Join the Facebook Thyroid Cancer THYCA group! (To be approved, the admins will need to see either your wall posts or friends list to prove you are not a spammer. You can re-close them after approval)