Thyroid Cancer Group: Introduce yourself and connect with others

Depending on where you live: Mayo clinic or Memorial Sloan Kettering in NYC.

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

I was diagnosed with Papillary Thyroid cancer in January of 2021 when a nodule was found incidentally on a neck CT. I had a complete thyroidectomy a few months later. My surgeon said that the lymph nodes looked clear. The path report from the surgery said that the cancer was 1.5 cm x 1.5cm x 1.5 cm, encapsulated with focal capsular invasion, no vascular invasion, and margins were free of tumor. I was rated as stage 1b and told that I was very low risk, the only risk factor being my age which was 70 at the time. I felt very lucky. Getting the levothyroxine dose titrated was a challenge but all my blood work looked good for several years. My doctor said that he considered me "cured." Then suddenly there were slightly elevated levels of abs-thyroglobulin. My doctor ordered an ultrasound which revealed a thyroid fragment in the right surgical bed. A year later an ultrasound revealed a fragment in the left surgical bed as well. I knew there could be cancer cells remaining but I didn't know that it was common for there to be thyroid tissue remnants post total thyroidectomy. Sorry this is such a long introduction to my questions. My doctor no longer considers RAI to be a viable treatment option if the remnants start to grow (because he said "it ruins people's lives." I have read the horror stories.
Question # 1: Are there treatment options other than RIA if these remnants start to grow? My TSH #s were up at my last blood draw and for the first time my QT-thyroglobublin was slightly elevated. My doctor thinks the remnants are likely effecting the TSH.

Question #2: I looked back at my previous blood work from 6 months earlier and found that the brand of my generic levothyroxine had been changed by my pharmacy at about the same time. I have read that those changes can have big effects at times. My doctor didn't seem to think this was likely. My pharmacy says they can't get my previous generic, even if I pay out of pocket. Have any of you had this experience and if so, how did you manage it?
Bottom line: I don't know if the increase in my TSH this month was due to the generic levo changing or the residual tissue starting to play a role (or both). It seems there is no way to know. I'm fine for now, and we will redo my blood work in 3 months rather than 6 months, but having been told several years ago that I was very low risk/cured, the watchful waiting has me feeling more anxious.

I was diagnosed with Papillary Thyroid cancer in January of 2021 when a nodule was found incidentally on a neck CT. I had a complete thyroidectomy a few months later. My surgeon said that the lymph nodes looked clear. The path report from the surgery said that the cancer was 1.5 cm x 1.5cm x 1.5 cm, encapsulated with focal capsular invasion, no vascular invasion, and margins were free of tumor. I was rated as stage 1b and told that I was very low risk, the only risk factor being my age which was 70 at the time. I felt very lucky. Getting the levothyroxine dose titrated was a challenge but all my blood work looked good for several years. My doctor said that he considered me "cured." Then suddenly there were slightly elevated levels of abs-thyroglobulin. My doctor ordered an ultrasound which revealed a thyroid fragment in the right surgical bed. A year later an ultrasound revealed a fragment in the left surgical bed as well. I knew there could be cancer cells remaining but I didn't know that it was common for there to be thyroid tissue remnants post total thyroidectomy. Sorry this is such a long introduction to my questions. My doctor no longer considers RAI to be a viable treatment option if the remnants start to grow (because he said "it ruins people's lives." I have read the horror stories.
Question # 1: Are there treatment options other than RIA if these remnants start to grow? My TSH #s were up at my last blood draw and for the first time my QT-thyroglobublin was slightly elevated. My doctor thinks the remnants are likely effecting the TSH.

Question #2: I looked back at my previous blood work from 6 months earlier and found that the brand of my generic levothyroxine had been changed by my pharmacy at about the same time. I have read that those changes can have big effects at times. My doctor didn't seem to think this was likely. My pharmacy says they can't get my previous generic, even if I pay out of pocket. Have any of you had this experience and if so, how did you manage it?
Bottom line: I don't know if the increase in my TSH this month was due to the generic levo changing or the residual tissue starting to play a role (or both). It seems there is no way to know. I'm fine for now, and we will redo my blood work in 3 months rather than 6 months, but having been told several years ago that I was very low risk/cured, the watchful waiting has me feeling more anxious.