Papillary thyroid cancer with lymph node involvement

So sorry you and your daughter are going through this. I was 33 when I was diagnosed and I had 3 cancerous nodules on my thyroid and 7/11 cancerous lymph nodes. Depending on what her endocrinologist suggests, she may have to do the Radioactive Iodine Therapy. I am just finishing mine and it was hard, but it’s a very effective treatment. One of my friends was 19 when she was diagnosed with papillary thyroid cancer and was able to have 3 successful pregnancies in her 20s. I know it’s scary and it seems like a lot, but they have come a long way in how they treat thyroid cancer and it is very effective. I hope that helps relieve a bit of stress and worry.

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

Thank you! I always appreciate hearing the “success” stories of people who were diagnosed young. I know they say it grows slowly and rarely spreads beyond the lymph nodes, but I have myself convinced it has spread further, because of the high amount of malignant lymph nodes. I have done myself a disservice by searching the web for information. Too much info isn’t always a good thing.

Thank you!

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.

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

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?

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!

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!

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!!