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.
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...
Thanks so much for reaching out! I wish you the best- one step at a time (I tell myself this daily!). I too am heading in to radioactive iodine- met with the nuclear oncologist yesterday. He is suggesting between 100-150 dosage- I was hoping for a lower amount but he said sometimes then it has to be repeated and I don t want that!! I have also read that with our diagnosis it may not even work. Sorry you will have to go through chemo too. Do you mind me asking your age? Also, where do you live? I am in New Jersey. Thinking of you..
Thanks so much for reaching out! I wish you the best- one step at a time (I tell myself this daily!). I too am heading in to radioactive iodine- met with the nuclear oncologist yesterday. He is suggesting between 100-150 dosage- I was hoping for a lower amount but he said sometimes then it has to be repeated and I don t want that!! I have also read that with our diagnosis it may not even work. Sorry you will have to go through chemo too. Do you mind me asking your age? Also, where do you live? I am in New Jersey. Thinking of you..
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....
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.
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.
My papillary cancer is called tall cell papillary- it is not common so I'm sure yours is just the regular papillary cancer , which has a very good prognosis!!
I actually had 2 surgeries (2 weeks apart), believe me I was petrified the first time, but honestly the anesthesia (Im very sensitive to meds) was the worst part for me the first day. They changed what they gave me the second surgery and it was much better. The pain of the surgery really wasn t bad at all- very able to tolerate with tylenol from the beginning...... you will be fine and get through this....... I wish you good luck.....
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
M
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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Good luck to your wife!
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.
-
Like -
Helpful -
Hug
2 Reactionshi,,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...
The thyrogen is ordered- waiting for it to be approved and sent to my oncologist's office, so no date yet....
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1 Reaction@sweettoothd I'm tagging @carolinanurse to make sure she sees your questions.
Sweettooth, when do you start the iodine treatment?
Thanks so much for reaching out! I wish you the best- one step at a time (I tell myself this daily!). I too am heading in to radioactive iodine- met with the nuclear oncologist yesterday. He is suggesting between 100-150 dosage- I was hoping for a lower amount but he said sometimes then it has to be repeated and I don t want that!! I have also read that with our diagnosis it may not even work. Sorry you will have to go through chemo too. Do you mind me asking your age? Also, where do you live? I am in New Jersey. Thinking of you..
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Like -
Helpful -
Hug
1 ReactionHi @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.
-
Like -
Helpful -
Hug
2 ReactionsMy papillary cancer is called tall cell papillary- it is not common so I'm sure yours is just the regular papillary cancer , which has a very good prognosis!!
I actually had 2 surgeries (2 weeks apart), believe me I was petrified the first time, but honestly the anesthesia (Im very sensitive to meds) was the worst part for me the first day. They changed what they gave me the second surgery and it was much better. The pain of the surgery really wasn t bad at all- very able to tolerate with tylenol from the beginning...... you will be fine and get through this....... I wish you good luck.....
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
M
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Helpful -
Hug
2 Reactionshi 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.
-
Like -
Helpful -
Hug
3 Reactions