Thyroid Cancer Group: Introduce yourself and connect with others

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.

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 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.

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 all. I had a lump and my Thyroid removed 12/2/22. I received results on the pathology report yesterday saying I have Anaplastic Thyroid Carcinoma which I am told is rare. I have an appointment with a Medical Oncologist next week to determine treatment.
Does anyone know of a case like mine? Scary since it is rare and not much information on it. My surgeon said he had only seen it 3 times in the years he has been practicing.

@fcast1334, getting a rare diagnosis is scary. But you are not alone. You can connect with others who have experience with Anaplastic Thyroid Carcinoma in this discussion:
- Daughter, 45 anaplastic thyroid cancer. Had surgery, chemo, radiation. https://connect.mayoclinic.org/discussion/daughter-45-anaplastic-thyroid-cancer-had-surgery-chemo-radiation/

As you prepare for your meeting with the medical oncologist, here are some questions you might wish to ask:
What stage is my thyroid cancer?
What treatments do you recommend?
What are the benefits and risks of each treatment option?
I have other health problems. How can I best manage them together?
Will I be able to work and do my usual activities during thyroid cancer treatment?
Should I seek a second opinion?
Should I see a doctor who specializes in thyroid diseases?
How quickly do I need to make a decision about thyroid cancer treatment? Can I take some time to consider my options?
What might happen if I decide to have regular checkups but not have cancer treatment?
Are there any brochures or other printed material that I can take with me? What websites do you recommend?
Am I able to access my medical records through an online patient portal?

Sending you warm wishes for the holidays and hope you will have time to spend with family and not think about cancer.

m san from nepal,,with fnac diagnosis shows suspicious papillary thyroid,,and ultrasound shows 9.1mmx6.5mm..so is it necessary to do surgery or not,,some doc saying do surgery n some saying wait till 1cm so m confuse what to do ,,can anyone suggest me,,

with fnac report shows suspicious papillary thyroid..and ultrasound shows right thyroid lobe--1.8x1.5x5.55cm(apxwxh) left thyroid lobe--1.5x1.11x3.33cm(apxwxh) nodule measuring..8.9x5,8mm(widthxap)is seen in right lobe and right isthmus,,m wondering to know to do surgery or not??

Welcome @san99999, that must be confusing when your doctors don't agree when is the right time to do surgery. First of all, it is great that the tumor was found so early. Early stage thyroid cancer is very treatable. Most thyroid cancers are treated with removal of the thyroid gland (thyroidectomy).

San, has it been confirmed that you have papillary thyroid cancer? Did the doctor explain why they prefer to wait until the tumor is 10 mm?

It has been confirmed that it is cancer. However, doctors here are saying to wait for 3 months to see if the tumor grows. They are also saying the size of the tumor might stay the same size for years. So, they are suggesting to only go for surgery if it grows within 3 months. Hence, we are getting confused more.