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.

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)

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/

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?

cherylharder2001 | @cherylharder2001 | Apr 29 6:24pm

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

Colleen Young, Connect Director | @colleenyoung | May 1 8:57pm

In reply to @tonbra32 "Hello. I was diagnosed with metastatic papillary thyroid cancer last year at Oregon Health Sciences University...." + (show)

@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/

Colleen Young, Connect Director | @colleenyoung | May 5 3:16pm

In reply to @cmhw "66 year old male. Diagnosed with anapestic thyroid cancer 10/31/23. Completed 7 weeks of radiation/chemo @Avera..." + (show)

@cmhw, by stretching the esophagus, I think it may also be referred to as esophageal dilation. You might be interested in these related discussions and blog:
- Esophageal Self Dilation
https://connect.mayoclinic.org/discussion/esophageal-self-dilation/
- Esophageal Self Dilation Therapy: An Effective Alternative
https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/esophageal-self-dilation-therapy-an-effective-alternative/

Are you doing self dilation? How is it going?

mabfp3 | @mabfp3 | May 6 4:52pm

In reply to @cherylharder2001 "Papillary thyroid cancer - metastasized into lymph nodes Had total thyroidectomy last August. Found suspicious lymph..." + (show)

I have also been diagnosed with papillary thyroid cancer and will meet with the surgeon virtually on Wednesday. I have had three nodules for six or seven years……they have always stayed benign. Always kept up with the ultrasounds every two years. Now, they have turned cancerous. I am 74 years old and basically in good health. This is all so new to me! I am so sorry that yours has spread to the lymph nodes. I will keep you in my prayers. I just saw that your post was in 2021, so I hope that you are now doing well. MaryAnn from Boston

mabfp3 | @mabfp3 | May 6 4:53pm

In reply to @cmhw "66 year old male. Diagnosed with anapestic thyroid cancer 10/31/23. Completed 7 weeks of radiation/chemo @Avera..." + (show)

I hope that you are doing well.

mabfp3 | @mabfp3 | May 6 5:03pm

In reply to @lise01 "Hi everyone, my name is Lise and it's been about 3 1/2 months since my cancer..." + (show)

@lise01

Hi everyone, my name is Lise and it's been about 3 1/2 months since my cancer diagnosis.

@san99999 I just went through a similar experience. I hope that since you posted things have become less ambiguous.

For me, ultrasound found 9 mm nodule that was determined after FNA to be (high likelyhood bethesda cat5) papillary carcinoma. My doctor considered it low risk so advised active surveillance since, like you mentioned, these small cancers can in fact stop growing and potentially never become a problem. He communicated his concerns about overtreatment of low risk thyroid microcarcinomas, but said that if it does start to change/grow we can still remove it without impacting positive outcome. Bottom line, he basically said it was up to me and what I felt comfortable with (some people just want it out asap) -- I decided to proceed with the active surveillance approach. We decided to do another ultrasound to make sure there was no change since December and, unfortunately, it grew 2 mm in 3 months ... so I am scheduled for surgery next month to remove the left lobe.

It was a bit of a difficult decision to make -- wait rather than opt immediately for surgery -- but once I did I actually felt a bit of relief. I have read every study I could find on active surveillance and asked my doctor a lot of questions. With the information I gathered I was able to actually calm down my anxiety a little and let myself trust that this is in fact slow growing and that I had some time to weight my options, get educated and settle in with a care team I feel I can trust.

Now that I am proceeding with the surgery I am feeling more of that anxiety creep back again -- worried about what it will feel like when I come out of anesthesia ... if I will need hormone replacement ... living with fears of recurrence ... etc ... and I'm very concerned about damage to my voice as I am a singer. I know its counter productive to get turned inside out about things that have not actually yet happened, but it's really hard. Trying to stay positive and not feel sorry for myself. Reminding myself that all things considered I am lucky it is treatable and was caught early.

Jump to this post

I just received a phone call from the dr who did my biopsy that two of the nodules on one side have become cancerous. There is a tiny nodule on the other side that was too small to be biopsied. I have one of those “virtual visits” with the thyroid surgeon on Wednesday. The biopsy dr told me that he will give me options on half the thyroid or the entire thyroid to be removed. I am hoping for you that all went well with your surgery and understand your concerns as a singer! Hopefully, the surgery is now behind you and you are doing well.

mabfp3 | @mabfp3 | May 6 5:22pm

In reply to @cottongal "Hi My name is Jenny I was diagnoised with Papillary Thyroid Carcinoma in December 2023, On..." + (show)

I have been just diagnosed with the same thing, Jenny. I will have a virtual visit with a surgeon on Wednesday. I hope that you are now doing well and that all of that cancer is now gone. The best thing for you to do is to be with a good Endocrinologist. Wishing you all the best in your recovery.

mabfp3 | @mabfp3 | May 6 5:28pm

In reply to @stever42 "Hi Everyone, my name is Steve and today my Dr called me and told me that..." + (show)

Hi Steve,
I just saw your post. I am hoping that you have had the surgery and that it was successful. I just received a phone call from the dr who did my thyroid biopsy and two of the nodules have turned cancerous. I was in shock when I received that call! As of now, I have a “virtual appointment” on Wed with a thyroid surgeon. Like you, I am also feeling scared. I am 74 but I have always been in good health. There are the two nodules on the right side that have changed and there is a tiny nodule on the left side, so I will have to see what the surgeon recommends. I hope that you are doing well now and that everything came out okay with your surgery. MaryAnn from Boston

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