Thyroid Cancer Group: Introduce yourself and connect with others

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.

Hi My name is Jenny I was diagnoised with Papillary Thyroid Carcinoma in December 2023, On Jan2 2024 I had Thyroidectomy with 5 Lymph mode Neck dissection. 3 of the 5 Lymph nodes tested positive for the same Cancer. I have been recovery spent 3 days in the hospital because Calcium levels were low and been home since. Been doing good next step is Endocrinlologist.

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Hi ! So glad your surgery went well and your recovery is going better now.
Be sure to write down your questions as they come up, so you have them with you for your appt. You'll be surprised how easy it is to forget something in a appointment like that. Take time for lots of rest as you recover. Prayers for a quick recovery

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@minoo

Hi everyone I have been diagnosed with Papillary Thyroid Carcinoma, and am very scared. What should I expect, dying or living? to be or not to be

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Live!
I was dx with a rare aggressive thyroid cancer more then 3o years ago , and when it spread the following year I was told my time was limited.
I'm still here and living a valuable and p r educative life. Yes I've had periods over the last years of health challenges but I raised my children and am now enjoying grandchildren!
Kepp it all in perspective. Don't worry too much. .make s point to do things you enjoy with people you b enjoy and live life each moment. Be present in your moments.
Take notes on your questions for your appointments, have someone go with you , to help remember key points of the appointment , or even take notes for you. Wishing you the best!!

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@lbrockme

Hi ! So glad your surgery went well and your recovery is going better now.
Be sure to write down your questions as they come up, so you have them with you for your appt. You'll be surprised how easy it is to forget something in a appointment like that. Take time for lots of rest as you recover. Prayers for a quick recovery

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Thank You

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Hi Everyone, my name is Steve and today my Dr called me and told me that I have papillary thyroid carcinoma today. I'm 40 years old and kind of feeling scared. Glad to see this forum is out there with everyones stories of recovery. I didn't really get much info, they biopsied my right side earlier this week and now this. So I'm just waiting for another dr to call me about my next apt and see where we go from there.

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Hi @steve42.
Hearing the word cancer is always concerning. The only advice I would offer would be to take things slowly and don’t rush right in thinking you have to have surgery right away. False positives can occur and you certainly don’t want to remove half, or all, of your thyroid based on one test.

If you are being directed to a surgeon for removal, you MIGHT want to consider geting a second opinion. One biopsy identifying cancer could be a false positive….are you having symptoms of an issue? When you had your FNA was it sent for AFFIRMA testing? From what I understand, this testing has the highest rate of accuracy for predicting cancer. If you did not have Affirma testing, maybe a second opinion could include another FNA that is sent for Affirma testing. Although no one wants to have an extra FNA, if it can give you a better idea about the odds of the accuracy of the information confirming cancer, it might be worth it.

Do you have a large nodule? There is a procedure called Radiofrequency Ablation (RFA) that might be an option to shrink the nodule. You would need to have a second opinion by a doctor who specializes in this procedure to know if you might be able to be considered for it.

It’s hard not to panic when you hear cancer but try not to rush into decisions. Research your options and ask questions. It was my understanding that thyroid cancer could not be diagnosed until surgery, so I tend to think it is best to try and rule out false positives before having surgery.

Good luck!

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@stever42

Hi Everyone, my name is Steve and today my Dr called me and told me that I have papillary thyroid carcinoma today. I'm 40 years old and kind of feeling scared. Glad to see this forum is out there with everyones stories of recovery. I didn't really get much info, they biopsied my right side earlier this week and now this. So I'm just waiting for another dr to call me about my next apt and see where we go from there.

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Hi Steve
I'm scheduled to have thyroid surgery on February 22 at Moffitt in Tampa FL. My byopsy came back 80% positive for cancer so I'm having it removed. I can't feel it and have no symptoms. I'm hoping for 1 day surgery and that will be it.
I'll be happy to try and answer any questions you have.
Don

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My husband has been diagnosed with papillary thyroid cancer in one nodule only. The surgeon is going to remove the entire thyroid because he had genetic testing that indicated it may return after it's removed. He has mulitple myeloma as well and is under consolidation therapy for it at the present. He had induction therapy and then an autologous stem cell transplant. He is waiting to see when the thyroid cancer surgery will take place. I'm interested in learning more about the thyroid process, recovery, post treatment after the surgery, and other notes from others that had other cancers at the same time.

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@mmm123

My husband has been diagnosed with papillary thyroid cancer in one nodule only. The surgeon is going to remove the entire thyroid because he had genetic testing that indicated it may return after it's removed. He has mulitple myeloma as well and is under consolidation therapy for it at the present. He had induction therapy and then an autologous stem cell transplant. He is waiting to see when the thyroid cancer surgery will take place. I'm interested in learning more about the thyroid process, recovery, post treatment after the surgery, and other notes from others that had other cancers at the same time.

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@mmm123, that must be a lot for both you and your husband to take in, having 2 cancers to deal with simultaneously.

If you also wish to connect with others living with multiple myeloma and stem cell transplant, you can also follow the discussions in the Blood Cancers & Disorders Support Group (https://connect.mayoclinic.org/group/blood-cancers-disorders/). I think you might appreciate this discussion specifically.

- My Autologous Stem Cell Transplant Journey - Mayo, Phoenix
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/

To your question at hand regarding papillary thyroid cancer and learning more about what to expect during and after surgery, check out this related discussions:
- How long after thyroidectomy did you start to feel “normal”? https://connect.mayoclinic.org/discussion/how-long-after-thyroidectomy-did-you-start-to-feel-normal/
- Diet after Thyroidectomy? How long will I need a soft food diet? https://connect.mayoclinic.org/discussion/diet-after-thyroidectomy/
- Life after total thyroidectomy after papillary cancer https://connect.mayoclinic.org/discussion/life-after-total-thyroidectomy-after-papillary-cancer/

How are YOU doing?

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@colleenyoung

@mmm123, that must be a lot for both you and your husband to take in, having 2 cancers to deal with simultaneously.

If you also wish to connect with others living with multiple myeloma and stem cell transplant, you can also follow the discussions in the Blood Cancers & Disorders Support Group (https://connect.mayoclinic.org/group/blood-cancers-disorders/). I think you might appreciate this discussion specifically.

- My Autologous Stem Cell Transplant Journey - Mayo, Phoenix
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/

To your question at hand regarding papillary thyroid cancer and learning more about what to expect during and after surgery, check out this related discussions:
- How long after thyroidectomy did you start to feel “normal”? https://connect.mayoclinic.org/discussion/how-long-after-thyroidectomy-did-you-start-to-feel-normal/
- Diet after Thyroidectomy? How long will I need a soft food diet? https://connect.mayoclinic.org/discussion/diet-after-thyroidectomy/
- Life after total thyroidectomy after papillary cancer https://connect.mayoclinic.org/discussion/life-after-total-thyroidectomy-after-papillary-cancer/

How are YOU doing?

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Thank you! Yes this is definitely a tough time! I’m trying to remain positive reading as much as I can about each cancer. Some days are better than others. It’s difficult not to worry and be scared, but I’m trying to handle it calmly which for me is not easy.

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