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.....
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.
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,,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...
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.
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.
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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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.....
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.
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2 ReactionsThanks 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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1 Reaction@sweettoothd I'm tagging @carolinanurse to make sure she sees your questions.
Sweettooth, when do you start the iodine treatment?
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 Reactionhi,,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...
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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Helpful -
Hug
2 ReactionsGood luck to your wife!
Best to your wife. Where do you live? I am in New Jersey, near Philadelphia.....
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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Helpful -
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