As usual, nothing is black and white with me and this disease.
I saw the thoracic surgeon two weeks after my surgery. She asked me how I had been feeling and I reported to her what had clearly become my new post-op norm: I stopped coughing and wheezing completely and I was still flushing, although the flushing was much better than before. She then told me that the pathology report was “interesting” and made a bit of a face: the pathologist did not find a tumor. She was completely surprised and kept saying that she didn’t think we got it and that I might need surgery again. I told her I was not that surprised by the pathology report. In fact, I had told M the previous night I thought there was a 70 percent chance the pathology report would read this way. After all, no tumor was clearly spotted on any of the CT scans and the surgeon didn’t see a clear tumor during the surgery either. That didn’t mean I believed I had surgery for nothing! The Octreoscan and my symptoms still meant something. It just meant, in my mind, that the tumor (or tumors) were very small. And, given some of my symptoms resolved completely after surgery, I knew something bad must have been removed during that surgery regardless of what the pathology report said. I said exactly this to the surgeon and then we had a very circular conversation in which I would say “I stopped coughing and struggling to breathe – you had to have taken something bad out” and she would reply “I never touched your airway, we are going to do another scan and if we see anything I will go back in and take it out” and I would say “but I stopped coughing…” followed by “but I never touched your airway” and on and on.
Finally I just told her that I wanted a copy of the pathology report and I wanted to get a second opinion on the pathology because there was no way that it could be right and I asked her how I could go about having the specimen sent somewhere else. And I told her that she should sleep well at night knowing whatever she did in there made life in my body much more bearable and I was very grateful for that. She said she was sending me back to Gandalf for follow-up, they had already discussed in detail and had planned to let me heal a bit more and then do some more scanning and that she might see me back again depending on what the scans said.
A year or two ago, I would have received this news and concluded that I just had surgery and no tumor was removed. At this stage, however, I have a whole new perspective. I understand that a pathology report is not THE TRUTH. A pathology report is the summary of the analysis performed by a single human being on a specimen. That is all it is. Until you get a rare disease (or any other disease for that matter) and thrust into this world of tests and scans and specialists, it is all too easy to stick your head in the sand and forget that medicine is not an exact science and doctors are human beings and very little about getting sick, diagnosed and (hopefully) better may be black and white. That’s scary but that is THE TRUTH too.
I read the report as soon as I got to the car and cried all the way home as M drove. Yes, I was expecting this sort of stupid report. Yes, I still believed that no matter what the pathology report said, my thymus had to come out and it was now out. Yes, no matter what the report said, I felt better. But why couldn’t things be black and white, just once? Why couldn’t that stupid report have just supported an actual diagnosis? I am so sick of fighting to get stuff figured out. Sick of getting second and third and fourth opinions. And I am left feeling simultaneously angry at the pathologist and sorry for him at the same time. How could he not find something? Did he look for ten minutes and then just give up? Is it possible he didn’t recognize tumor tissue that was staring him in the face? Why didn’t he try and stain the tissue anyway? Or was he frustrated too? He was sent a specimen labelled “intra-thymic carcinoid” and he can’t find anything. He’s probably never seen a thymic carcinoid before – very few pathologists have. And now he can’t find it. Has this ruined his day just like it is ruining mine?
Even though this was the outcome I expected, I was still frustrated beyond belief. I just want a damn diagnosis. I want to be able to say “I have X” instead of having to make these qualified statements “We think I have neuroendocrine cancer because of A, B and C; however it hasn’t been confirmed by D and E.” But at some point, I realize this is unnecessary. I am stuck in the past, when my diagnosis WAS being questioned all the time and I need to let that go. No one is doing that now. The Wizard is not questioning it. Gandalf is not questioning it. The thoracic surgeon is not questioning it either. “Carcinoid” and “carcinoid syndrome” are all over my chart. The diagnosis is not being questioned. All that is being questioned is whether we got it out.
The more troubling piece, besides ripping open some psychological wounds from bad interactions with doctors over the past few years, is that without proper classification of a tumor there might not be a clear treatment plan. Neuroendocrine cancer, like other cancers, can vary in aggressiveness. There are a number of analyses that need to be conducted on the tumors by the pathologists to classify exactly what kind of cancer one is dealing with and this analysis can have important implications for treatment post-op, just like it does for other cancer patients. So, “no tumor identified” is not just annoying. It makes the path forward for treatment very unclear. All the more reason to figure out a way to get a second opinion on the pathology.
One interesting item on the pathology report is that the specimen contained a “fibrotic area” and some “mild follicular hyperplasia” and I am not sure about the significance of either. The former, in particular, seems quite interesting as I discovered there is a large medical literature on carcinoids and fibrosis. For example:
In particular, the literature indicates that the hormones secreted by the tumors can cause fibrosis locally (i.e., in the location of the tumor) or distally (i.e., in a location other than that of the tumor).
So, could this “fibrotic area” mentioned in the pathology report be indirect evidence of a carcinoid?
As usual, I have so many questions and so few answers as I wait for the next doctor appointment.