Thyroid Cancer Group: Introduce yourself and connect with others

@tonbra32, thanks for starting a new discussion about lenvatinib. I offer more information about financial assistance here:

- Anyone taking Lenvatinib? https://connect.mayoclinic.org/discussion/anyone-taking-lenvatinib/

I also invite you to join this discussion with other members living with metastatic thyroid cancer:
- Thyroid cancer with distant mets at diagnosis
https://connect.mayoclinic.org/discussion/thyroid-cancer-with-distant-mets-at-diagnosis/

Papillary thyroid cancer - metastasized into lymph nodes
Had total thyroidectomy last August. Found suspicious lymph nodes and confirmed cancer ,2 weeks age
Will have surgery end of May and then...whatever is next

66 year old male. Diagnosed with anapestic thyroid cancer 10/31/23. Completed 7 weeks of radiation/chemo @avera in Sioux Falls. Now at Mayo for second opinion. They are attempting to stretch my esophagus so I can drink, and possibly eat. Any one else have this after treatment?

Welcome, @diachi100. It sounds like you're concerned about the radioactive iodine treatment. You might wish to ask your endocrinologist more questions to feel comfortable with making your next decision and to share your concerns. I might start with questions like:

- Why might radioactive iodine treatment be the best next step for me?
- What are the common side effects or risks of this treatment?
- What are the risks of my not having radioactive iodine treatment?
- Are there other options?

Diachi, you might like to talk with others who have had this treatment in this discussion:
- 1131 radioactive iodine pill: How did you manage it?
https://connect.mayoclinic.org/discussion/1131-radioactive-iodine-pill/
See all related discussions https://connect.mayoclinic.org/group/thyroid-cancer/?search=radioactive%20iodine&index=discussions

Hi all, check out today's member spotlight and get an inside look at what and who inspires Lynne Marie and why road trips and ice cream are important to her.

– Encouraging hope: Meet @lbrockme https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/encouraging-hope-meet-lbrockme/

Follow the About Connect blog to get updates when new Member Spotlights are published: https://connect.mayoclinic.org/page/about-connect/

Hello. I was diagnosed with metastatic papillary thyroid cancer last year at Oregon Health Sciences University. The cancer spread to my lymph nodes and lungs. Last July I had my thyroid and a bunch of lymph nodes removed. I then did the radioactive iodine treatment. My cancer was typed and found to be DTC which is resistant to radioactive iodine. I just had my 6-month CT scan that found the nodules in my lungs have grown ~2-3 mm. Next stop is meeting with a new oncologist about treatment options.
I am in my early 50's and a little down about the prospect of having to take a REALLY EXPENSIVE medicaition that costs more than I make in a year as well as having to put up with the side effects of the drug.

Anyone have a similar story and is anyone taking medication for it? How are you doing with it?

I was diagnosed with Stage 3 thyroid cancer, April 2023. Nodule was found by a yearly ultrasound & biopsy was done. Had my surgery a few days later. Endocrinologist & oncology helped me decide to have thyroid taken out with nodule due to having breast cancer the year before & thyroid cancer running high in my family.
I was not told to get with a speech therapist before or after surgery to help with speech. I was told about it 8 months later. Therapist worked with to regain my voice back but I still continue to struggle. I'm not a candidate for radioactive iodine treatment due to being CHCK2+. It's the multi cancer gene, unfortunately. So endocrinologist said she wouldn't have me do the treatment.
Hope this was helpful.
God bless....

New to the group....I had a 2cm metastatic lymph node and had a total thyroidectomy and neck dissection 3 months ago. Lab work 2 months after surgery shows Tg levels are high - thyroglobulins are 42. Endocrinologist is recommending radioactive iodine. Has anyone found an alternative to iodine treatment?

thanks for input. I will have my thyroglobulin checked in 2 weeks again, hopefully it is receding. I'm not sure how it is removed from our bodies when it is very high.

I'm glad things seem to be settling down for you. I was told the same thing by my surgeon and it's been 30 plus years. We are now in a , " if it creates a problem we will address it then " mode .
Hang in there!