Thyroid Cancer Group: Introduce yourself and connect with others

I have a breast MRI every year, followed by a mammogram six months later. I’m having to fight Medicare to pay for the $2100 MRI. I get a colonoscopy every year and an endoscopy every other year. Thank you

Hi Colleen, he is seeing some decrease in the mass in his neck with first Keytruda immunotherapy, chemotherapy (4th one)and he is on his 12/35 radiation treatments. Today is a hard day as he can’t swallow anymore. He says its like swallowing razor blades and has stopped eating. Tomorrow he will have IV fluids and a feeding tube put in.

Welcome new members @mcmaya @tobyscott @wwbosworth and @koh to the Thyroid Cancer group.

Koh, glad to see you connected with others in the Hurthle Cell Carcinoma discussion https://connect.mayoclinic.org/discussion/anyone-here-with-hurthle-cell-carcinoma/

Mcmaya, did you decide to get radioactive iodine again? Did you talk to your doctor about your concern in getting a secondary cancer?

TobyScott, how is your son doing on chemo and radiation? Are they able to see improvement (shrinkage of the mass) yet?

Hey Wendy, @mcmaya @vstormy @dho @botts are a few other members who have papillary thryroid cancer. With both Lynch and CHEK, do you stay on top of breast cancer and colon cancer screening?

Hi, I had a thyroid nodule that a doctor at a cancer hospital monitored for about 10 years. After testing at another hospital to determine if I might be able to have radio frequency ablation, it was revealed that there was a 50% chance that my nodule was cancerous. I had right lobectomy with isthmusectomy, and one parathyroidectomy in July. The results revealed Hurthle Cell Carcinoma. I find the follow up care fairly nonexistent. I do not take any medication but I can’t tell if my symptoms are normal recovery issues, hormone changes, an infection, or the cancer cells in an associated area. When I report issues I am told they are not related to the surgery or Hurthle cell cancer but I can’t shake an infection I seem to have gotten when I had the surgery. Does anyone have experience with Hurthle Cell Carcinoma? My understanding of the cancer is based on my own research and then explained by the doctor. Thanks for any information.

Hi, I'm Wendy from San Diego. I had three papillary cancer tumors in my thyroid in 2014. I'm doing well and take tirosint every morning. I have Lynch Syndrome and CHEK2.

Hello, my son age 30 is diagnosed with anaplastic thyroid cancer in May, 2022. He had a 2 lb mass removed from his neck, thyroid was removed and another lymph node on his neck. He begins chemo and radiation this week but a second grape size mass is now growing close to the site of the mass. Any advice is greatly appreciated.

I was diagnosed with Papillary cancer that has metastasized to both lungs. Hundreds of small and larger cancers in each.
Had RAI, 175 with better results than expected.
Doctors would like me to do it again. I’m reluctant because I was originally told it could cause a secondary cancer elsewhere.

Hi -- I haven't been diagnosed with thyroid cancer. I had FNA for thyroid nodules in 2011 and 2013 that were both negative. I had annual follow up ultrasounds until 2018 and was advised to discontinue because ultrasounds had been clear for 5 years. In 2020, I had another thyroid ultrasound which didn't show much change. All nodules (and I have many) at that time were no greater than Ti-RADS 2. I just had a thyroid ultrasound this past week and had widespread changes. Most are TI-RADS 4 now and I have one TI-RADS 5. I am surprised that nearly all of the nodules have become suspicious for malignancy. Has that happened to others who had multiple nodules? I meet with my PCP next week to get FNAs scheduled. I've been educating myself this week on the types of thyroid cancer. I do have the RET mutation on genomic testing and so am quite concerned about medullary thyroid cancer.

HI! you are a meddie
fellow! I am also in the Facebook group and have participated with comments in our two books, I am kind of a veteran after 14 years leaving with MTC.

HI EVERYBODY! my name is Elba, I live in Puerto Rico and have medullary thyroid cancer, diagnosed during 2007, TT same year, I am treated at MD Anderson, at this point I am stable after so many years and 3 surgeries (neck and head), taking a new medicine called Retevmo that is working very good to me. I participated on the medical trial, by then the name was Loxo but it was FDA approved this year during May I think.