Anyone else diagnosed with tall cell papillary thyroid cancer? Did you have iodine therapy??
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Welcome, @sweettoothd. I'm inviting some other members familiar with papillary thyroid cancer and iodine treatment like @lilyann @roya81 @carolinanurse @bobr @jlanderson76 @mcmaya, although I'm not sure if any of them has the tall cell variant (TCV) of papillary thyroid carcinoma.
Sweettooth, have you already had surgery? What questions do you have about iodine therapy?
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….
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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
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.
Thanks for responding! May I ask you if the iodine treatment made you feel sick? Also, how did you isolate- at home? in hospital? I hope the treatment works for you. I also have a more aggressive type of cancer, which is why they are recommending the iodine treatment. Thanks
Thanks for writing! I'm sorry you are going through this! What type of papillary cancer do you have? As I wrote, I have an aggressive form of papillary cancer ,which is why they are recommending the iodine treatment. Glad to hear you had good results! Did the treatment make you feel sick? I wish you the best…..
I went on a low salt iodine diet for two weeks. Then had injections on 19th and 20th. Second injection made me tired but no other side effects. Took the pill on the 21st. Drove myself to the hospital that day since idk not want to have any around me. Drove home and then began isolation in our home. We are empty nesters so I took a bedroom, bathroom and a third room so I could isolate, watch tv and work via my computer. I first day, I was tired, took a nap but no other side effects. Isolated for 5 days from wife. As far as food, wife prepared everything, all on dishes that could be washed and I took the back to kitchen and I washed with soap and water. Laundry 5he same. Kept isolated and washed with no other clothes. Toothbrush isolated and bagged after a week and will toss in trash after days. Advice is you just follow their instructions. I am sorry and wish you the best. I know this is hard, mind consuming and my advice is one day at a time. Good luck.
hi everyone, i have papillary carcinoma, never hear of aggressive papillary, all i have heard is that the papillary is slow growing so it is awful to hear that yours is aggressive. i am meeting with another surgeon tomorrow that is a specialist in doing the thyroid's. so i will keep you all updated. i will be honest however, just the thought of surgery is not appealing. my heart goes out to each and everyone of you that has endured so far. i am very nervous and hope i am not offending anyone. thanks for listening. god bless one and all.
I too had to diet 2 weeks before treatment and another week after. Belonging to the LID group on Facebook helps tremendously especially with what and what not to eat in addition to talking with people in similar situations.
I was hospitalized during and after my dose for 3 days.
I had quite a bit of nausea and was given meds which were ok, but didn’t take it all away. Again, info on what to do from the LID group was very helpful.
I didn’t like the treatment, but was so happy with the results. It’s been 3 years and will now probably have to do another treatment to keep it all at bay. I’m not curative but I am able to manage it.
Try not to make yourself crazy even though it’s scary, it is manageable
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