Thyroidectomy: What to choose based on 70% cancer probability?

@gillsden, just checking in. Did you make a decision about getting a thyroidectomy? How are you doing?

Hi Colleen,
Thanks so much for checking in. I have had so many wonderful replies and suggestions from my original post and I want to thank all who have responded to me. Yes, I did make a decision to have the entire thyroid removed. These nodules have been there for six or seven years and have been monitored by my endocrinologist. In 2021, one of them grew and it was biopsied, but it remained benign. The last ultrasound, done in February, showed significant changes, so I returned to B&W Hospital in Boston, and had the same dr do the second biopsy. She called me, letting me know that the two nodules were cancerous. A tiny nodule, on the left side of the thyroid was too tiny to be biopsied. We are fortunate here in Boston to have some of the best medical care in the country. She recommended four surgeons and I chose the one who I felt could best answer all of my questions. I had a virtual visit with him and he was *wonderful*! He was extremely generous with his time for me and told me three times that I will “be fine” and that I will “do great”. He left the choice up to me on half the thyroid or the entire thyroid to be removed. Because I am 74 years old, I chose to have the entire thyroid removed. Because of that tiny nodule on the other half, I would not want to go back in for another surgery if that also developed into a cancer. He totally left the decision up to me and told me that it was a 50/50 decision and that I could decide. He comes *highly* recommended and he is a five star surgeon on reviews I have read. The thing that I really liked about him was that he was compassionate and kind to me, along with reassuring me that I will be fine! Thank you, Colleen, for reaching out to me. My surgery will be on Tuesday, May 21st.

I just found out a week or so ago that the nodules that I have been monitoring for five or six years have grown and turned cancerous. I was shocked to hear this news because I have been having ultrasounds every two years, and the nodules have stayed stable and benign. When this last ultrasound detected growth, I had to have a biopsy, and cancer was detected. I am fortunate to have a wonderful endocrinologist and new surgeon and my thyroid will be removed on May 21st. I am nervous about it but realize that it has to be done. The dr told me that I will have to go on thyroid medicine for the rest of my life. As long as all of the cancer will be removed, I don’t mind taking a pill every day. MaryAnn from Boston

Thank you so much! I feel completely back to myself after the thyroid surgery one week ago today. I was conflicted as to whether to get half of the thyroid removed or the entire thing. I chose to get it all out. I am so glad that I did because my surgeon found additional nodules when it was removed that had not shown on the original ultrasound. Thank you for your post and for thinking of me.

Hi All - The longer I wait for surgery the more questions I have. Has anyone experienced symptoms of thyroid disease even though their labs have all been normal. My doctor said that isn’t possible but I truly feel like I have all the symptoms and my labs have always been normal. Thank you for your input!

Hi All - The longer I wait for surgery the more questions I have. Has anyone experienced symptoms of thyroid disease even though their labs have all been normal. My doctor said that isn’t possible but I truly feel like I have all the symptoms and my labs have always been normal. Thank you for your input!

Yes! I have been dealing with that too! My doctor says the same thing. It is hard to know if the issues are due to Thyroid, side effect of medication, or some other cause. The ONLY thing I have been able to figure out is that subtle medication changes can have BIG effects. The range of “normal” is significant. When my TSH is very low I have very bad side effects. When my TSH is midrange, I am still having side effects but they are “ better.” High doses of Synthroid were very bad and Tirosint made me think I was having a stroke! I am currently on 25mcg of Synthroid 5 days a week….. feeling “ better” but still too many side effects to say I feel good. ( blood test next week might give us a clue on what to try next) One of the odd side effects is internal tremors….. I feel like I’m shivering inside yet no tremors outside. Joint and muscle pain, leg cramps, insomnia and being unfocused seem to still be here too but less extreme. I have appt with Rheumatologist in a few weeks; Dr wants to see if something else is influencing this. I don’t know, but whenever I went off the medicine ( due to extreme reactions and pain) the issues went away for a while. It is a tricky situation! My thyroid numbers fall in the normal range; you have to go by both thyroid numbers AND your symptoms and how you are feeling. My first Endocrinologist just kept telling me we want to keep your TSH low to prevent cancer and kept increasing my dose of medicine. I could not take all the side effects… I had to change doctors because she kept increasing my medication and I just kept feeling worse. Definitely advocate for yourself. Good luck!

I forgot to mention…. Prior to surgery, I had a large right sided nodule but my blood tests were ALWAYS normal. No signs of any thyroid disease! Post surgery, I was diagnosed with Hurthle Cell Carcinoma and they said I had Hashimotos Thyroiditis….. the thyroid seems to be a very tricky organ!