1. < Thyroid Cancer
Moderator

Thyroid Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 20, 2019

Welcome to the Thyroid Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with thyroid cancer or caring for someone with thyroid cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

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

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 24 12:04pm
In reply to @diachi100 "New to the group....I had a 2cm metastatic lymph node and had a total thyroidectomy and..." + (show)
@diachi100

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?

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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

REPLY
cmhw | @cmhw | Apr 26 6:31pm

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?

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cherylharder2001 | @cherylharder2001 | 4 days ago

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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @tonbra32 "Hello. I was diagnosed with metastatic papillary thyroid cancer last year at Oregon Health Sciences University...." + (show)
@tonbra32

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?

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@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/

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