I had a follow-up appointment with Plan C today – a local oncologist specializing in NETs (which includes carcinoids). Since my labs all came back negative and the Octreoscan was read as negative, she is sending me back to my PCP and won’t be scheduling a follow-up with me. She knows something is wrong – I was flushing profusely when I was in her office today – but she has looked into this as far as she is able to here and is going to leave it at that.
I do still have the somatostatin test pending and she did order two more tests – Chromogranin A, which is another marker for carcinoids, and calcitonin which can be elevated with medullary thryoid cancer (another disease that can also cause flushing). She also recommends I see an allergist to perhaps further rule out a mast cell disorder, although she did run some tests for this and they were negative as well.
I am obviously very disappointed, but as I told the doctor, it is not her fault that the tests are negative. I was a little irked that she and her radiologist are re-interpreting my Octreoscan report (which said “suspicious for neuroendocrine tumor in the anterior mediastinum”) to “faint uptake.” She is claiming it was so hard to find her radiologist initially read it as normal and only saw the abnormal uptake after being asked to go back and look again in a specific location based on the NIH findings. Does that mean the uptake was faint or that the radiologist didn’t look? I can only speculate on the answer to that question.
As I have a tendency to do in doctor appointments these days, I started crying at some point. And the doctor said what all the others say – perhaps I should see someone to help me cope better with what is going on and perhaps I should consider treatment for depression. I explained to her that, under the circumstances, my mood is actually pretty good at home. And I can’t help crying because living like this for months/years at a time and continuing to run into dead ends is incredibly frustrating. I AM NOT DEPRESSED. THIS IS DEPRESSING. There is a big difference.
Back to the drawing board. There will be a Plan D. I am not quite ready to figure that out or face it today. But I have no choice but to start putting it together tomorrow.