Thyroid Cancer Group: Introduce yourself and connect with others

Thank you. Be well

Thank you Mary Ann. I will be at Memorial Sloan Kettering in NYC. I live
in NJ. My surgeon specializes in thyroid cancer. He said he was
"concerned " because of the size of the module and that it is plastered
against my windpipe.

I am so sorry that the nodule is involved in your windpipe, but you are at one of the best hospitals in the country! You will be in excellent hands! I am so happy that you have a surgeon who specializes in thyroid cancer. My surgeon here in Boston was also a specialist in thyroid cancer too. Hopefully, your surgeon will be able to remove that nodule from your windpipe and just remove the thyroid. I was shocked when I received my diagnosis, as I am sure that you are too. My surgeon removed a lymph node, which did not show cancer, but for the next five years, I have to go for an ultrasound on my lymph nodes in my neck every six months, along with periodic blood tests to make sure that the medication is at the right level. I will keep you in my prayers for a successful surgery and compete healing. You are with a fantastic hospital! Please take good care and keep me posted after your surgery.

@kmlnj, I doubt you'll be reading this message today as it is the day of your surgery. But I send the note so that you know I'm thinking of you today. I look forward to hearing how you are doing as you begin your recovery. Let us know how you're doing when you are able.

Dear thyroid friends.

I am post op complete thyroidectomy now 2 weeks. I met with the surgeon to review pathology of the tumor. I will continue with a 3 doctor team - endocrinologist, medical on oncologist, and radiologist. These doctors will decide on the future treatments. It is likely I will need radioactive iodine in a few months. The thyroid was very large and stuck to my windpipe and voicebox. Therfore, some tissue was left behind.
I am a patient at MSK in NYC. My surgeon specializes in thyroid cancer. I have been in good hands.

Good luck!

I was recently diagnosed with Papillary Thyroid Cancer found and the 0.5 cm nodule was dissected with clear margins during a parathyroidectomy. 6 weeks after this surgery I had an ultrasound with a highly suspicious 1.8 cm nodule on the left thyroid and a suspicious prominent lymph node on the left side. The two received fine needle aspiration. The thyroid nodule result was negative for cancer and the lymph node was insufficient to be diagnosed so that did a thyroglobulin wash and it came back negative for cancer. There’s a 1.9 benign follicular adenoma on the right side of thyroid. My surgeon wants to remove the left side of thyroid and any enlarged lymph nodes and then monitor the right side after surgery using Ultrasound.
I’m scared. I don’t know if I should get a total thyroidectomy or a the left side only. I’m 61 and in otherwise relatively good health. My first cousin was diagnosed with papillary cancer, had his entire thyroid removed, took 3 radioactive iodine capsules and his thyroid cancer metastasized to his lungs two years later. Would you have a total thyroidectomy or a hemithyroidectomy?

As you know, every person is different and their metabolism is unique to them. I am so very sorry you are faced with this complex decision. The team at your hospital should be telling you what the best course of action is. You should not be left to struggle with this on your own.
I did have a complete thyroidectomy. There are some cancer cells left on my trachea and small cells on lymph nodes on my lower neck. My team recommended the course of action. They said- do this and you will be okay". So I will have radiation and chemotherapy for 6 weeks starting in January 2025.
I am a patient at Memorial Sloan Kettering in NYC. There was a team meeting - surgeon, radiation, medical oncology and others. THEY advised me. If you are not getting directions based on best practices and best outcomes, try another cancer hospital, or go back and ask them to recommend.

Update. Due to inoperable cancer on my trachea and small part of lymph nodes, I will have 6 weeks of radiation and chemotherapy starting in January 2025.

I'm so sorry you are dealing with this. It must be extremely stressful to have a cousin diagnosed with papillary cancer which metastasized to his lungs 2 years after surgery. Do you know the specifics of the findings after his initial thyroidectomy? Was there spread into any surrounding tissue at that point? Did they determine if it had spread into any nearby lymph nodes? More distant lymph nodes? My point is that it's easy to assume it's an "apples to apples" comparison in this type of situation, when the likelihood is there are some significant differences.
That being said, I had a very small, highly suspicious nodule on my thyroid identified in January of this year. I am 63 and have had Hashimoto's syndrome since I was 16, which has required me to take thyroid medication on a daily basis since that time. In light of the fact I was already taking the medication and not wanting to mess around with the likelihood of multiple procedures, I opted to have a total thyroidectomy on Jan. 31st. I was pleased with my decision. Papillary thyroid cancer tumors were found in three different areas and on both sides of my thyroid. There was also cancer in two of the six lymph nodes they removed. In addition, two of my 4 parathyroid glands were removed. I recovered beautifully from the surgery and have had no other issues, other than some difficulty with calcium regulation due to the removal of the parathyroid glands.
My endocrinologist felt radioactive iodine treatment was not indicated and this concerned me. I opted for a 2nd opinion with Moffitt Clinic in Tampa. The endocrinologist at Moffitt agreed with my doctor, saying they have determined radioactive iodine was no longer standard protocol. While I'm still not totally convinced, I deferred to their expertise and have had no issues with labs or ultrasounds since that time.
Oddly, I was diagnosed with breast cancer in July. Although the breast cancer is also a papillary cancer, it is NOT related to the papillary thyroid cancer. Had a bilateral mastectomy in August with clear margins and clear lymph nodes.
The bottom line and answer to your question is this: I'm thrilled I chose to have a total thyroidectomy instead of a hemithyroidectomy. Which it actually ended up being an important choice, the peace of mind it gave me far outweighed any negative I could identify.
Finally, this stuff is scary. And super stressful. Don't hesitate one moment to get a 2nd opinion! I was worried it would upset my doctor, but she was pleased I did and pleased her treatment plan was approved by outside experts. It shocked me to find that 2nd opinion had such a big impact on my ability to relax. Another decision I'm glad I was bold enough to make.
I hope this helped in some way.
You have more support than you know.
Cathy