Thyroid Cancer Group: Introduce yourself and connect with others

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.

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

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.

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.

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.

@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?

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.

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

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!

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.