Monday, July 23, 2012

BRAF and the Endocrinologist

Nine days after my surgery I went back to Oakland to meet with my endocrinologist for the first time.

My visit started with me waiting in line behind a couple who had driven in from Butler County. Probably about a one to two hour long trip. The front office person couldn't find them on the schedule, and then it turned out that was because the guy didn't have his appointment until the following day. I felt myself growing more anxious as the conversation continued. They had both taken off of work for the day. Couldn't the doctor squeeze the man in? No, no he could not. I felt bad for the employee who had to deliver such crappy news. But she seemed ok with it, very calm. I reminded myself that it wasn't my problem. Frankly, the employee seemed to be handling it better than I was. I checked in and sat down.

I was taken back fairly quickly and didn't have to wait long to see Dr. E. While I got a quick check up- he looked at my neck, checked my breathing, etc, we talked about our kids. Our daughters were just a few months apart and they both had older brothers. So! Things in common and all that. Then he asked if I had gone over my pathologies yet. 'No,' I said, 'I meet with the surgeon tomorrow'. He could actually go over the pathologies with me now. So we moved over to his desk.

First, he wanted to let me know that this was cancer and he was taking it all seriously. Which was great- I'm sure some people with papillary thyroid cancer don't feel like their doctors take it seriously enough. But as I had already discussed with Dr. H, I feel a lot better when my cancer is made light of. I kept my mouth shut though. I know that Dr. E. felt like he was doing the right thing.

We went through some stuff that I was aware of, the diagnosis was correct, the thyroid was removed, as were some lymph nodes. Some of the lymph nodes tested positive for cancer and some did not. And then he mentioned that my cancer cells also had the BRAF mutation. Apparently lots of different cancers have the BRAF mutation. I don't know what it means for all the different types, but in papillary thyroid cancer it makes the cancer cells more aggressive and it spreads more quickly than non-BRAF cancers. (I'm going to guess this is why it was in my lymph nodes as well as my thyroid.) About 40%-45% of all papillary thyroid cancers have the BRAF mutation, so it's pretty common. In addition to making the cancer cells more aggressive, it also means that you stand a higher chance of the cancer coming back. So instead of a 5% chance that your thyroid cancer will come back you stand a 20% chance. Which sucks. Although I'm going to guess that those are still better odds than a lot of other cancer patients receive. And I can always choose the optimistic route of saying, 80% likelihood that it won't come back.

For some reason though, that day, I wasn't feeling very optimistic. And the BRAF revelation really shook me up. I had been feeling so great about the surgery, and feeling as though the cancer was truly gone- which was ridiculous, since I hadn't undergone the treatment yet-but I'd been so positive about everything just the same. And now I was feeling like I'd been knocked to the floor and I couldn't get back up.

He finished up the talk by going over my current meds. The calcium, he said, was the surgeon's call. I could discuss that with her tomorrow. But he really felt that 88 mcg of synthroid (replacement thyroid hormone) was way too low. He bumped it up to 100.

With talk of pathologies and meds being over, I was next sent down the hall to meet with Dr. E's nurse.

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