Thyroid Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 20, 2019

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.

ptc61 | @ptc61 | Nov 11 7:02pm

In reply to @kmlnj "Depending on where you live: Mayo clinic or Memorial Sloan Kettering in NYC." + (show)

Thank you. I’ll look into those.

kmlnj | @kmlnj | 5 days ago

In reply to @kmlnj "Update. Due to inoperable cancer on my trachea and small part of lymph nodes, I will..." + (show)

I am replying to my own post. I am on a fb group for Papillary TC. It seems "almost" everyone is having RAI.
But I have also noticed there is another fb group for RAI resistance. (No I don't get my medical directions from fb). Think of it as a survey.
I will ask my oncologist who I see next week. Perhaps they know radiation/chemo works and don't want to take chances and lose time with RAI?
I will report back what I learn.
If anyone has an opinion on this, please chime on.
Thanks

kmlnj | @kmlnj | 5 days ago

In reply to @catherinec "I'm so sorry you are dealing with this. It must be extremely stressful to have a..." + (show)

@catherinec

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

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Thank you for sharing your story. So sorry you were diagnosed with breast cancer. However. ..there are 3 women in my family/extended family who had triple negative BC. They are doing great. No recurrence.
Keep thinking straight and continue to care for yourself.
Hugs.

colorado73 | @colorado73 | 2 days ago

Hi. I've had a total thyroidectomy last April. Due to cancerous nodules. I too suffered with my voice after surgery. It has changed but I'm somewhat back to normal, at least my new normal. I needed voice therapy after surgery so I went to that for about a month or so. Was referred by my Endocrinologist. I suggest it to anyone that's having this type of surgery.
I too take Synthroid everyday & do labs every few months to check my levels. Other than that everything is going ok. Except on days when I struggle with no energy.
Good luck to all that are facing struggles & surgeries.
I'd recommend it to anyone.