Yesterday I saw my endocrinologist for my annual visit. At the end of her exam we had a brief conversation on being followed for thyroid cancer vs being followed because I have no thyroid.
I had an endocrinologist until the mid-1990s and then she retired and I had a primary care (and didn't need any other doctors for a long time - much different than now). In 2009, the Thyroid Cancer Survivors Association had their annual conference in Boston so I volunteered and attended it. Everyone else there talked about what their endocrinologist said to them and, their blood levels, and how they tweaked their meds all the time. Then I realized that I didn't have an endocrinologist and wondered if I should.
I went to a few of the sessions, including one lead by an endocrinologist who talked about various aspects of what they do. At the end of the session, I went up to the presenting doctor and asked him if he thought I should have an endocrinologist and he said yes. So I found a new one and started getting regular follow ups. Now seven years later, I go for yearly visits and ultrasounds every couple of years.
Yesterday, I asked Dr. C, my endocrinologist, about possible recurrence after all these years. She said its possible, but chances are slim, but there really is no real research data on this. So that was pretty inconclusive. We also talked about the new rates of diagnosis for thyroid cancer. She feels that this is largely due to new technology which allows for smaller nodules to be seen.
Back when I was diagnosed, ultrasounds were not even available. Thyroid cancer was usually only found by seeing a bulge on the patient's throat. This was then followed by a surgical excision. Most were benign but not mine.
We also discussed the fact that while I do need an endocrinologist because of my lack of thyroid, it is uncertain if I really need the cancer follow up. This includes ultrasounds to see if there is any regrowth (we really do not want that). But since cancer can be very sneaky, you never know. Thyroid cancer has been known to recur decades later even though there is no supporting research. So we will continue the cancer follow up part for now with ultrasounds every couple of years.
I will also receive life long blood work for my replacement thyroid hormone. No way around that one.