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Tall cell papillary thyroid cancer: What treatments did you have?
Thyroid Cancer | Last Active: Mar 14 11:59am | Replies (28)Comment receiving replies
Hi- thanks for reaching out! I had 2 surgeries- a lobectomy, and then when it turned out to be tall cell a thyroidectomy 2 weeks later. I am in the process of making an appointment with a nuclear oncologist. I 've read about the iodine therapy, but am concerned about it since it seems to have mixed results in the studies. My new endocrinologist reassured me that it has come a long way and that lower doses are used now??? I would love talking to others... Also, are you able to connect me with others who have the tall cell variant? I know it s not real common, but I figured on this site there would be others....
Replies to "Hi- thanks for reaching out! I had 2 surgeries- a lobectomy, and then when it turned..."
I had my first iodine treatment (100)on Dec 21st with a scan on the 28th. Scan came back showing isolation to neck region. Have hurthle cell cancer with a Terk mutation. Had thyroidectomy and numerous lymph nodes removed. Sorry I don’t have a lot of info here. Wish you best of luck.
Hi @sweettoothd
I have tall cell with BRAF mutation and TERT promoter. I am getting radioactive iodine on the 22nd this month. I was just diagnosed in November with extensive neck disease including esophagus, 16/73 positive lymph nodes, lung mets, and pleural mets. I had neck dissections on both sides and healing from that has been a little difficult. Next I have the radioactive iodine and then start external beam radiation right after that. I was told to expect chemo as well. I was told that not all tall cell cases are this aggressive. I have that combination of mutations complicating matters. I am sad to hear anyone else is going through this and wish you the best.
Praying for u! I have heard there r lower doses now . Look up the clayman thyroid institute in Tampa highly highly recommended. The top thyroid surgeons in the world. They might be able to help u
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Hi, I just wanted to share that I had the radioactive iodine therapy 2 years ago and will probably need to do it again in a few months.
I have papillary cancer that has metastasized to both lungs.
My dose was quite high, 174, I believe, and I had good results. I cannot be cured, but it can be managed. It wasn’t fun, but it is a cancer treatment and it did shrink my many, many lesions