Thyroid Cancer Group: Introduce yourself and connect with others

At age 65 I was diagnosed with Papillary Carcinoma in May of 2017. I had a total thyroidectomy in June. I have been on 150mcgm of levothyroxine since then. No other treatments.

I had 2 surgeries on my thyroid 19 years ago. One hospital wanted me to keep my thyroid. The other wanted all removed. I selected the Dr who wanted it all removed. They transplanted my parathyroid gland somewhere in a muscle. I never had to have chemo or anything. I still go for untra sounds every 3 years. Mine was papillary and fullicuarl mixed. I got mine from radiation treatments as a child. I also have 3 meningiomas (tumors) in my brain from the radiation also. Had a craniotomy for one of them. I went to Mayo for another opinion on my tumors. After other opinions I found them to be the most knowledgeable. So maybe not my thyroid this time But my tumors could grow at anytime. So I certainly understand your feelings. Just put yourself in their hands. I wish for you the best.

Good morning. I'm happy this "Connect" site exists as I'm hopeful to connect with others who might relate to my story and can offer support as someone who's been/going through this journey. I have wonderful family/friends supporting me but none can really understand just how lonely this can be. So I thank you in advance for any support offered!

While doctoring with a different care team (not at Mayo) I was diagnosed with papillary thyroid cancer in March 2019 and had surgery a month later to remove my full thyroid, along with a right neck dissection as the mass had wrapped around many nerves/vessels in my neck. Following the surgery, it was determined I actually had "poorly differentiated" thyroid cancer. In June 2019 I completed the radioactive iodine therapy treatment (took 2 pills and quarantined at home 5 days). I was ok the rest of 2019 but in late January 2020 discovered another lump on right side of my neck and had outpatient surgery a few weeks later to remove. Following that surgery I then went through 30 radiation treatments on my neck, which I completed as of 4/10/20. On 4/24/20 results of a chest CT scan showed progression of my cancer into my lungs and also to a small mass under my right arm.

I was completely shocked after a 2nd surgery and 30 radiation treatments..that.my cancer had still progressed. At this point, I decided to seek a 2nd opinion and went to Mayo. I'm so grateful for my Mayo care team! I've learned my particular cancer is comprised with a RET gene and Mayo has had good results in their clinical trials with a drug called RETEVMO that targets this RET gene. Fortunate timing for me...the FDA very recently approved this drug (in pill form). So I've just started taking this chemo pill and praying I'll tolerate it well, without any major side effects and that it helps to knock this darn cancer back!

I'm 54 years old, married to wonderful husband and we have 2 sons ages 21 and 19. I still have lots to look forward to in my life and want to be here long as I can!

I had papillary thyroid cancer with surgery in 2017. Surgery was in northern MN. Two of my parathyroids were removed (unintentionally). I am now followed at Mayo Rochester.

Thank you! I was diagnosed with Papillary thyroid carcinoma in September 2019. I had a left lobectomy and isthmusectomy. So far, I’m doing great. My surgery was successful and I haven’t had to take any hormone replacement medication yet. I’m thankful that I had such a great team of doctors at Mayo.

Welcome @trod @ljcarper @scb09 @aejohns to the Thyroid Cancer group on Mayo Clinic Connect. Pull up a chair and join the virtual circle.

What type of thyroid cancer were you diagnosed with? What treatments have you had? How are you doing?

Just joining this group. 20+ years ago diagnosed with papillary thyroid cancer, had I-31 treatment, thyroidectomy, and 3 surgeries within 7 years to remove enlarged lymph nodes in neck. Two questions, after all these years I'm just wondering if I should be using iodized or non-iodized salt? Also, I switched from synthroid brand to generic due to cost. Anyone know if this is a good thing or bad?

Hi. My number are good. My dr is still pretty positive cancer still remains. We check again in three months. I’m staying positive as I know I will be alright. 🙂 it’s still really stressful and lonely.
Thank you for asking.

@sweetgia003, how did the 3-month visit go?

Oh I’m off the drip! 🙂 I go next week for my three month tumor marker check & ultrasound is this week.