Papillary thyroid cancer with lymph node involvement

Posted by camdynsmom @camdynsmom, May 7, 2024

Hi! My 18 year old daughter was recently diagnosed with papillary thyroid cancer. She had a TT and a bilateral central neck dissection last week. Her pathology report came back today and 18 out of 38 lymph nodes were malignant. We see an endo on Thursday to discuss her next step in treatment and see her surgeon for a post-op on Monday. Just looking for some reassurance/info. I feel like 18/38 is a substantial amount of malignant lymph nodes.

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@azitaanita1

Why do you get chest scan?

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I have numerous nodules in my lungs- they are not sure whether that is thyroid cancer metastasized or not- so they watch them and see if they grow. So far, they haven't.

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@sweettoothd

I have tall cell papillary cancer, which by nature is more aggressive, and I am older (66) which doesn t help either!! I also have the braf v600 gene mutation. This was all found out after they took out my thyroid and dissected it. I have had 1 round of RAI 100mci (1 year ago). In february I had a left neck dissection because they had biopsied 1 lymph node on that side and it showed cancer. They took out 17 lymph nodes- only the 1 biopsied had cancer thankfully. They are now "following " 2 lymph nodes in center and right sides... I get bloodwork, thyroid ultrasounds, and chest can scans ......the bloodwork and ultrasounds have been every 3 months....but depending what they find could be more or less. I think it is very important to be at a large research facility who is up to date on thyroid cancer, and does in depth testing. Part of my bloodwork gets sent out I believe to a specialized California lab, and I usually wait 2 weeks for the results. I also think it is very important to still live your normal life, and take care of all this but to not let it "consume" your every thought! (Easier said than done sometimes)! I hope this helps a little- keep me posted on what you decide, and your reults...wishing you the best!!

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Why do you get chest scan?

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Hi,do not worry about this.I am 30,I just found papillary thyroid carcinoma two month ago.I just finish a surgery.Doctor take half of my thyroid.This is not that knd of serious cancer.Through surgery and medicine can totally control

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@catherinec

Thank you for validating my concerns, but I'm sorry you have this insight due to such a complicated and frustrating situation. May I ask what makes your particular type of papillary cancer more aggressive? How was this identified? What sort of treatment have you had? How do they plan to keep a close eye on it? How often are you being seen, regular ultrasounds, etc?
I don't mean to overwhelm you and I appreciate the information
you've already provided. I'm just surprised by how much it helps to have received the feedback. If you'd like to share anything more, I'd be thrilled.
Thanks again!

Jump to this post

I have tall cell papillary cancer, which by nature is more aggressive, and I am older (66) which doesn t help either!! I also have the braf v600 gene mutation. This was all found out after they took out my thyroid and dissected it. I have had 1 round of RAI 100mci (1 year ago). In february I had a left neck dissection because they had biopsied 1 lymph node on that side and it showed cancer. They took out 17 lymph nodes- only the 1 biopsied had cancer thankfully. They are now "following " 2 lymph nodes in center and right sides... I get bloodwork, thyroid ultrasounds, and chest can scans ......the bloodwork and ultrasounds have been every 3 months....but depending what they find could be more or less. I think it is very important to be at a large research facility who is up to date on thyroid cancer, and does in depth testing. Part of my bloodwork gets sent out I believe to a specialized California lab, and I usually wait 2 weeks for the results. I also think it is very important to still live your normal life, and take care of all this but to not let it "consume" your every thought! (Easier said than done sometimes)! I hope this helps a little- keep me posted on what you decide, and your reults...wishing you the best!!

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Thank you for validating my concerns, but I'm sorry you have this insight due to such a complicated and frustrating situation. May I ask what makes your particular type of papillary cancer more aggressive? How was this identified? What sort of treatment have you had? How do they plan to keep a close eye on it? How often are you being seen, regular ultrasounds, etc?
I don't mean to overwhelm you and I appreciate the information
you've already provided. I'm just surprised by how much it helps to have received the feedback. If you'd like to share anything more, I'd be thrilled.
Thanks again!

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@catherinec

I had a complete thyroidectomy and partial parathyroidectomy 4 months ago and was diagnosed with metastatic papillary cancer (2 of 6 lymph nodes were positive). My endocrinologist assures me "it's absolutely nothing to worry about" and refuses to consider radioactive iodine testing or therapy. She tells me it should be considered as Stage 1, while my oncologist says it is clearly "Stage 3, at the least." Not sure what direction to turn at this point other than to request a second opinion from Mayo. Any thought?

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I think your thought to get a second opinion at Mayo is a very smart one. My initial ENT (that s who did my surgeries) told me all was fine. I eventually transferred care to Penn, and have had more intervention since , and now understand my particular papillary cancer is more aggressive and I need to be watched very carefully. I wish you the best!

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I had a complete thyroidectomy and partial parathyroidectomy 4 months ago and was diagnosed with metastatic papillary cancer (2 of 6 lymph nodes were positive). My endocrinologist assures me "it's absolutely nothing to worry about" and refuses to consider radioactive iodine testing or therapy. She tells me it should be considered as Stage 1, while my oncologist says it is clearly "Stage 3, at the least." Not sure what direction to turn at this point other than to request a second opinion from Mayo. Any thought?

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@camdynsmom, has your daughter met her doctor? What treatment options were suggested? How you YOU doing?

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I'm 67 and recently had my thyroid removed due to cancer. While relating my woes to a friend my age she said, "You'll be fine. I haven't had a thyroid in 40 years!" I had no idea she had had cancer long ago. She had two wonderful, now grown kids and has had a wonderful and medically uneventful life. Of all of my friends she is by far the healthiest! Hope this helps.

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@mabfp3

I am so sorry to read this. I will keep you and her in my prayers.

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Thank you!

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