Tall cell papillary thyroid cancer: What treatments did you have?

Posted by sweettoothd @sweettoothd, Jan 11, 2023

Anyone else diagnosed with tall cell papillary thyroid cancer? Did you have iodine therapy??

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

@lilyann

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.

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lilyann here. especially sweettoothd. when i wrote to you that i had never heard of aggressive papillary, well, that's exactly what i have along with the tall cell. i did have the radioactive iodine, the high dose. still have the cancer and no, i would not do that over with. actually i was given 6-10 months. so that's that. so did not know any of this, but, i was so naive that i was just going to get the large nodule out. the surgeon said he would have to do 2 surgeries to try and get my voice back. well, i am squeezeing out some sound but its not easy. so bottom line. i wish all of you wellness and happiness and so glad that all of you on mayo are so helpful with your answers. god bless all of you

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@sweettoothd

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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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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@colleenyoung

Good advice for @san99999, Kevin. San, were you able to discuss your report with your oncologist? What are your next steps?

@kevink, how is your wife doing?

@thyroid2023, I'm sorry to hear that your daughter has ongoing complications. I can understand her interest in stem cells, but I offer caution. There are claims out there that thyroid and endocrine patients can be treated with adult stem cells called autologous mesenchymal cells, which are stem cells that are derived from the patient's own adipose (fatty) tissue. There are no published studies on this therapy's efficacy, safety, or use. I don't want her to be attracted to promises of charlatans.

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My wife is currently on a low iodine diet preparing for Thyrogen shots tomorrow and Tuesday and then receives the radioactive iodine pill on Wednesday. We were told to isolate from each other for 7 days. Ten days after radio-iodine she will go in for a scan to view results of RAI.

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@kevinmk

Regarding your report, we were very confused after our report and found it most helpful to review the report line by line with our surgeon and again with our endocrinologists.
Resorting to google was not helpful or accurate for us as each persons conditions are specific and somewhat unique. So we found it was far more informative to zoom with surgeon and endo for their expert opinions on the fnac report and the post surgery pathology report.
All the best to you.

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Good advice for @san99999, Kevin. San, were you able to discuss your report with your oncologist? What are your next steps?

@kevink, how is your wife doing?

@thyroid2023, I'm sorry to hear that your daughter has ongoing complications. I can understand her interest in stem cells, but I offer caution. There are claims out there that thyroid and endocrine patients can be treated with adult stem cells called autologous mesenchymal cells, which are stem cells that are derived from the patient's own adipose (fatty) tissue. There are no published studies on this therapy's efficacy, safety, or use. I don't want her to be attracted to promises of charlatans.

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I did have iodine, yrs later my daughter’ was diagnosed also. She did not have to do iodine. I’m on Synthroid she’s on Armour , she wants to do stem cell . Unfortunately, the dr who did her total thyroidectomy also damaged her parathyroid glands. At 19 it has been a roller coaster ride, I feel it has robbed her of a better quality of life,

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Yes, my age too! I'm 65- so scary in that regard too!! Wish your wife the best....I know it s hard for you too. I see my husband struggling to be so supportive ,while being scared for me and him at the same time! Not easy for the caregiver either!!!

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@lilyann

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.

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It sounds like you are getting several opinions and that’s great.
My wife just had surgery and she did great. She asked anesthesiologist for some anti nausea and it helped her afterwards in recovery.
She says the surgery was the easiest part so far, considering the shock and adjustment of original cancer diagnosis and all the effects that that has on your life.
All the best to you.

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@san99999

hi,,fnac report shows suspicious thyroid papillary carcinoma,,and usg shows mixed echogenic nodule 8.9x5.9mm..(8.9x5.9)is seen between right isthmus and right lobe ,,CT report shows bilateral level v nodes noted,right 7mm n left 6mm,and right lower paratracheal node measurer13mm,,what does it mean and ?what better for precaution ?pls suggest me...

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Regarding your report, we were very confused after our report and found it most helpful to review the report line by line with our surgeon and again with our endocrinologists.
Resorting to google was not helpful or accurate for us as each persons conditions are specific and somewhat unique. So we found it was far more informative to zoom with surgeon and endo for their expert opinions on the fnac report and the post surgery pathology report.
All the best to you.

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@sweettoothd

Best to your wife. Where do you live? I am in New Jersey, near Philadelphia.....

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We are about an hour south of Los Angeles. Surgery was at UCLA medical.
We interviewed four surgeons and three endocrinologists in December and January and learned a lot about procedures and options.
We entered surgery expecting a lobectomy but the surgeon requested permission for a complete thyroidectomy after he began due to discovering a larger and more invasive tumor then expected.
We are waiting for blood test results and then we will schedule radio iodine asap.
Prior to surgery we thought it was stage 1 or 2 papillary but post surgery pathology of the tumor recategorized it as stage 3 or 4 tall cell sub type. She is 55 so her age is a factor that adds a stage.
Sounds like you live in a populated area so I’m hoping your medical service and treatment options are plentiful.
All the best

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@kevinmk

My wife was just diagnosed with tall cell variant from the pathology report after a thyroidectomy. We are scheduling radioactive iodine treatment now, ASAP.
Preparing to get the two shots and self isolate next month.
All the best to you and we will keep you posted.

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Best to your wife. Where do you live? I am in New Jersey, near Philadelphia.....

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