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.

bhinderer | @bhinderer | Mar 1 6:32pm

Papillary thyroid cancer , somewhat aggressive. TT done 6/23, 48 lymph nodes removed, 21 cancerous. RAI in 11/23, my body scan showed no metastasis. I'm 72 and overall good general health otherwise. Had Pet scan 2/28/24, showed no abnormalities. Had ulttrasound 2/29/24, showed some lymph node abnormality. My left vocal cord is paralyzed, surgeon did injection to help my voice. next step - meet with endo doc and surgeon.

Lynne Marie | @lbrockme | Mar 5 11:19am

It sounds like you have had a rough 7 or 8 months . Its looks like your doctors are being very assertive with your care. Thats good to see. And good news with the RAI and PET scan.
You seem to be involved with your care and that is important.
Hoping the lymph node is just responding to all the trauma your body has been through. Praying your meeting with the endo goes well. Hopefully all your blood tests are stable and everything is under control.
I've had an aggressive thyroid cancer for over 30 years. Treatments have come a long way since my early days with it.

Colleen Young, Connect Director | @colleenyoung | Mar 9 2:28pm

In reply to @bhinderer "Papillary thyroid cancer , somewhat aggressive. TT done 6/23, 48 lymph nodes removed, 21 cancerous. RAI..." + (show)

@bhinderer, I'm checking. How did the meeting go with the endocrinologist and surgeon? What's next for you?

bhinderer | @bhinderer | Mar 9 4:55pm

In reply to @colleenyoung "@bhinderer, I'm checking. How did the meeting go with the endocrinologist and surgeon? What's next for..." + (show)

The endocronologist was glad to see pet scan was good, he is still concerned with high Tg (342) but it is decreasing every month. My TSH is very low, that was
a goal for me. I meet with surgeon on 3/29. The oncologist was kind of surprised to see me (I was referred by endo doc) saying my prognosis is good, in fact he said I would probably die with Thyroid cancer but not from it. I want to know what the surgeon thinks, I think for now I will not rush into any surgery, take a wait and see approach. I chat with other thyroid cancer survivors to get some input on treatments, they are helpful.

Lynne Marie | @lbrockme | Mar 23 12:28pm

In reply to @bhinderer "The endocronologist was glad to see pet scan was good, he is still concerned with high..." + (show)

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!

bhinderer | @bhinderer | Mar 25 6:08pm

In reply to @lbrockme "I'm glad things seem to be settling down for you. I was told the same thing..." + (show)

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.

diachi100 | @diachi100 | Apr 17 11:11am

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?

colorado73 | @colorado73 | Apr 17 2:25pm

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....

tonbra32 | @tonbra32 | Apr 23 12:29pm

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?

Colleen Young, Connect Director | @colleenyoung | Apr 23 3:20pm

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/

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