I think, at some point in the (near) future, I will be giving up on waiting for a definitive answer on where (if) the NETs are in my body. So many tests, so few answers.
Yes, I am happy for the initial, and relatively fast, discovery of the carcinoids in my stomach. I was told, and my research backed this up, that the most effective - and really, the only viable treatment for this type of tumor, is surgery. No chemo or radiation or weird drugs with odd side effects. The surgery would be it. End of story. Except, in my case, as we find out in a post surgical report that completely surprises the doctor, it's not?
So, onwards. Test, after test, after test. Lab loses some bloodwork, takes multiple calls before doc answers question, more appointments, and tests, and...NOTHING. So, good news, bad news, no news, come back in a few months.
Meanwhile, almost one year post surgery and I can almost eat an entire meal at a restaurant - as long as it's a meal from the children's menu. Too much sugar or fat, or the wrong type of food and I'm in the bathroom or feeling extremely nauseous.
And, it just feels like the doctors aren't that interested any more. Too rare to be on the list of concern, not enough useful test results to keep their interest up.
So, pretty soon, I think, I'm going to be done.
Except that I won't. It's easy to say that, but the possibility that cancer is creeping slowly through my body unseen but undetectable just keeps gnawing at me. And no one really understands that, and it's difficult to say to people, since it's hard to say out loud.
