DEAR THYROID^TM

Dear Thyroid;

This letter has been a long time coming. It shows how the changes in medical standards can affect us much later on. It shows that cancer never goes away. It is not meant to scare anyone. It is my life.

In 1981, I was 19 and had just ended my freshman year in college. I had been to the nurse several times for sore throats. She recommended I see my doctor over the summer. It wasn’t a sore throat. It was thyroid cancer. I had my surgery and returned to school a week late in the fall. When I went home at the holidays I had my RAI treatment to get rid of my remaining thyroid.

For follow up, I saw an endocrinologist annually until the late 1990’s. She told me at that point that I should just be checked my a primary care and maybe an endocrinologist every few years. Just blood tests. No other tests as they were not part of standard treatment guidelines at that time.

I basically ignored my cancer as there was no support given to me. Cancer was still the big C in the early 1980’s. It was a death sentence but I was too young for it and didn’t fit into any categories for cancer patients. Ignoring it seemed easiest at the time.

In 2007, I was diagnosed with breast cancer – completely unrelated – and went through chemo and radiation. I became more open about my cancers and talked about them and started my blog about cancer. In 2009, as a result, I went to the Thyca conference and met all sorts of great people who could relate to my thyroid cancer.

But everyone else had an endocrinologist – I felt left out. I asked my oncologist if I should be seeing an endo and she said yes. I saw my new endocrinologist in January 2010, she checked my blood work and ordered a neck ultrasound as they are now standard every five years for thyroid cancer people. When I last saw an endo, they were not standard. It was supposed to be a clean test. It wasn’t. I have a something – initially called either a recurrence, residual thyroid tissue or a lymph node by the radiologist – that is big enough to be seen and too small to be biopsied. It was supposed to be a clean test and it wasn’t. I was thrown completely for a loop. 29 years later?

I had a follow up ultrasound in July. Its still there and the same size – big enough to be seen and too small to biopsy. Now it is only called residual thyroid tissue or recurrence. The next steps are to continue with six month ultrasounds and see if it changes, or grows big enough to be biopsied.

After 29 years? This isn’t supposed to happen. I know from my own research that thyroid cancer can recur decades later but that wasn’t supposed to be me. I wasn’t supposed to get any cancer in the first place and now I am not supposed to have a recurrence. This is not fair. This is not nice. But its my life and I’m living with it.

Caroline

I was diagnosed at 19 with thyroid cancer, papillary and follicular, 8 of 11 nodes positive, encapsulated, approximately 4 x 4 x 4cm tumor. That was in 1981. Treatment standards were different. I never had a neck ultrasound until this year. I blog my life with cancer.

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