Monday, November 27, 2017

My Second Opinion: Three Hours of Disappointment

The MD Anderson Cancer Center Logo displayed on a granite waymarker. The word cancer is crossed out.
One of the hundreds of signs near
the many buildings on this campus.
I was warned. I just didn’t believe. I had to think that a research hospital that is studying the very symptoms I had been dealing with would be able to offer some insight and a treatment plan. Maybe this advanced hospital might have an upcoming trial – one hears about so many of them. It seemed so right when I arranged my visit.

MD Anderson disappointed me.

I was inspired to call because they are studying a monoclonal antibody reaction to new treatments – the very problem I was having. I had a list of questions to answer.  I gathered all the information that I could gather, and they arranged for the rest. My coordinator told me that I should reserve three to five days. I used all of my hotel points to reserve a five day stay at a hotel near the massive medical complex that is MD Anderson. She told me that they would complete my schedule after I met with my second opinion oncologist.

I was done in three hours. I met with a fellow, a social worker and the oncologist.  That’s it. I am welcome to call if I need. I will lose all of my points, having to check out early.

The fellow did well enough, taking our history and working his way through our questions. He and the doctor both examined my history and my situation carefully enough. The doctor questioned whether I should be on additional hormone sensitive treatments like Letrozole or Ibrance. He’s going to suggest we substitute Zometa for xGeva, because he is sure that my incredible debilitation for months was just that and nothing more: a reaction to the xGeva.  But overall, he didn’t seem very inspired to shake the tree and seek additional treatment. I heard nothing cutting edge, no advanced thinking. I can carry on, because apparently I'm just an average Stage IV patient.

The Xeloda seems to be working, and although it’s tricky to manage, I seem to be making progress. Unfortunately, I also have new skin mets appearing, then disappearing as the Xeloda attacks. My wound is still open. So, he is concerned. But he’s not interested in treating me, there are no trials that make sense, and he doesn’t think radiation is a good idea. (Tough -- I think it makes way more sense than this constant creeper battle.)

What chapped me further was his dismissive attitude. I explained to him that I am study- and data-driven, but despite my explanations about the studies, he still thinks there is no connection to thyroid meds. He mocked my diagnosis of “radiation asthma.” (You know, the problem that everyone on this thread complains about.)

He committed the greatest sin of all, as far as I am concerned as a patient: he was patronizing.  I think you know me well enough by now to know that doesn’t fly with me, ever.

When we were done, I realized I’ve been given a gift. I’ve had confirmation that the path I’m on now is fine, that MD Anderson is not as prepared to be cutting edge as they claim, and that I need not worry about the quality of my care. Clearly, I’m doing as well as I can expect.

My next CT scan will be in December. I’ll update you all.

Dr. T, thanks for being my partner, not Dr. God.