Thyroid Cancer Group: Introduce yourself and connect with others

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.

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 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.

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.

Hello, I was diagnosed with stage 3 Papillary Carcinoma October of 2009. I had a total thryroidectomy and all lymph nodes on the left side of my neck and along my collar bone removed, cancer had spread to 9 lymph nodes. I have been cancer free for 10 years after undergoing radioactive iodine treatment and have no signs of a possible reoccurrence. I take 112 mcg Synthroid.

Hi Nanci, when you say you had radiation? How were you exposed as a child? I had thyroid 4 years ago and doctors kept asking if i was exposed to radiation as a kid.

Hi! Everyone happy to find this group, i had papillary thyroid cancer at age 37 its been 4 years cancer free i get blood work completed every 6 months, but havent had any further ultrasound work im guessing its because the blood works has all come back good?

I had X-ray treatments when I was 11 at Children’s Memorial Hospital. They didn’t know in those days it was dangerous. I had a growth on my neck which they did surgery on. Then the radiation treatments. When I was in my 20’s they notified me I might get thyroid cancer from it. I always watched it and sure enough I got it when I was 58. I am now 78. I am in good health except for the tumors that I have. I am getting an MRI every year to see if they are growing.

As I understand it, you should be getting an ultrasound every year after having thyroid cancer, in addition to the regular bloodwork. That’s what I’ve been doing since my May 2017 thyroidectomy due to PTC. Having an endocrinologist familiar with thyroid cancer is key to good follow up care.

Today a new member (@lorenza1210) posted news that her father was just diagnosed with thyroid cancer. Beyond the shock, she wonders whether they should seek a second opinion before starting treatment.

@nobody @jessea @bobr @nancirae @sophia07 @lindameyerson @sweetgia003 @jlanderson76 @ljcarper @aejohns @trod @dho @rzawie24 @angie7302 and @donnadonut, I was wondering how many of you sought a second opinion. Why or why not?