Last week, I had an appointment with an oncologist specializing in NETs. I was my usual nightmare patient self, walking into the appointment with a stack of symptoms and labs as long as my arm. I tried my best to keep the list short and to the point, but the more questions she asked, the more messy it got.
I got a good first impression of this doctor. She spent a lot of time with me and M. She was happy to look at the pictures I brought with me and we discussed my labs at length. I even ran my crazy somatostatinoma theory past her and showed her my suppressed TSH, IGF-1, gastrin and glucagon labs that were indirect evidence supporting this theory. She didn’t laugh at me, which other doctors undoubtably would have. Instead, she peppered me with questions about pituitary function post pituitary surgery (as this is not her area) as if I was a doctor and not a patient. And she ordered the somatostatin test. The tumor is very rare and not surprisingly so is the test. The cancer center where I would have the test didn’t even carry the tubes needed to collect the blood for this sample, so it was going to be another week or so before the right equipment could be ordered and I could even get the blood drawn. The sample has to be sent elsewhere to be processed as well, so I might be waiting awhile to hear back about the results. And I am already preparing myself for the high likelihood my somatostatin is going to come back normal, as I do understand the tumor is rare and that even if this was my problem the labs don’t always support the diagnosis on the first round (or the second or third rounds for that matter).
She agreed that my symptoms could be consistent with a carcinoid and also agreed that a thymic carcinoid was unlikely to show up in my labs. She understood it was possible, but problematic, for the Octreoscan and not the CT to find a tumor. She was willing to send me for a consult to one of the thoracic surgeons her group works with, but wanted to try and make sure the consult was a productive one and so wanted to help me build a case first. This seemed like a very reasonable approach to me. Building a case meant three things at this point: (1) more labs to try and rule out other potential causes for my symptoms (namely mast cell disorders and pheochromocytomas) and rule out other locations for a carcinoid that would show up on labs, (2) conducting another Octreoscan to see if anything has changed in the last two months and (3) sitting down with her radiologist and all of my old scans and the new scan to see if a surgical target could be identified.
She also indicated an interest in getting me a Gallium-68 scan depending on how the first round of tests came back. Gallium-68 scans are even more sensitive than Octreoscans and are able to pick up lots of neuroendocrine tumors that Octreoscans and more inferior scanning methods (CTs, MRIs) routinely miss. There are only a few places in the US that have access to Gallium-68 scans and they are only being used in clinical trials at present, so getting a scan is not all that easy. I had been looking into these trials and contacting various researchers about getting one done myself in the last couple of months. So I was really encouraged to hear her bring this up with me before I broached the topic with her.
So far, all of the labs have come back normal (with the exception of the labs that have been abnormal for the past year). The Octreoscan results are also back and the radiologist report says there were no abnormal areas found on the scan! At all! I already had a positive scan in January and I feel worse, so how is this possible?? I have a CD of the Octreoscan images and they didn’t look normal to me but I am an economist, not a radiologist. That said, I have seen enough normal radiologist reports on my pituitary MRIs (when I had two tumors that even an economist could see without being told where to look) that I don’t really believe the radiology report this time either. But it is still discouraging to be facing higher odds of another dead end with Plan C.
I see the oncologist again on Monday and can honestly say I have no idea how that appointment is going to go. All I can do in the meantime is try and stay as comfortable as possible at home. I am taking hydrocortisone to keep the carcinoid symptoms at bay – I am requiring increasing amounts to keep the flushing and coughing under control and that does concern me, as I have been carefully avoiding all the foods that I thought were causing my symptoms. So whatever is going on, it is continuing to get worse. And I really hate taking hydrocortisone as taking this stuff is sort of like giving yourself Cushing’s (it is a synthetic version of cortisol) and I am SO OVER Cushing’s. But right now, it is a necessary and hopefully temporary evil.
So back to waiting and trying not to get my hopes up after another round of uninformative tests.