The Oncologist Blues

I had a rough day Friday. I woke up in a bad mood, and it got worse during the day. I'm trying to find an new oncologist, and that search turned out to be a part of my bad day.

My first oncologist, Dr. R, was great. I saw him for about seven years, and we got along very well. We listened to each other. But he moved out of state to teach in a medical school, and the practice assigned me a new one, whose office was closer to my home, so I went with it.

But Dr. K was not great. He wouldn't listen, and when I had questions, he wouldn't give me answers. He ordered a PET scan that he admitted I didn't need, and which I refused to have. I was looking for a new oncologist when he retired.

The practice assigned me Dr. V, who was great. He is a lymphoma researcher, and we talked about some of the the research that got him excited. I enjoyed our visits. And then he was offered his dream job at a major research hospital, and he left.

The last time I saw him was in February. I emailed Dr. R, and asked him for a recommendation for someone new. He recommended Dr. L, and I looked at the website of the hospital where he works (the office I go to is affiliated with the main hospital), and Dr. L looked great. He's a researcher, works with medical students, and he had Dr. R's recommendation.

I held off for a while before I called to make an appointment. My disease has continued to be stable -- Dr. V said I could go a year between visits if I wanted to -- and I wasn't in a rush.

But over the last week or so, I've been thinking a lot about cancer (more than usual, for someone who reads and writes about it every day).  All that thinking made me decide it would be a good time to make an appointment with Dr. L. An appointment this summer would put me in the 4-6 month range that I've kept between appointments, and that I'm comfortable with.

That's when the problem started.

I called Dr. L's office to make an appointment at the research hospital where he sees patients. I was put on hold for a about 10 minutes, and then someone got back to me and said I should call the office near my house, since Dr. L was now seeing patients there once a week.

Perfect. Close to home is always nice. I called and was put on hold again. When someone finally answered, I was told that someone else would call me back. When someone did, 20 minutes later, I was told that I would need to call the main hospital again (the one I had called originally).

OK -- some miscommunication, but that's fine. I called the number I was given, and the person who answered said "Who gave you this number?!" very suspiciously, like we were in a movie. I was put on hold again, and after 10 minutes, I was told that Dr. L doesn't see lymphoma patients (which is not what the hospital website says, or what Dr. R told me). I was transferred back to the other office and offered an appointment with a general oncologist.

My goal is asking Dr. R for a recommendation was to see a lymphoma specialist. I really liked being able to have those kinds of conversations with Dr. V. A general oncologist is fine -- I'm sure I'll get good care -- but my needs are kind of specific at this point.

I took the appointment, though I was extremely frustrated. The whole thing took over an hour, and I was transferred between the two offices three times. I was already having a bad day, and the experience put me in a big funk.

Part of the frustration was with the system, and I don't think that's going to get any better any time soon. No coordination between offices that are supposed to be part of the same hospital system, and apparently out-of-date information on their website.

And part of the frustration is personal. I'm on my fourth oncologist in four years. I'd like one that I can have a relationship with, and at this point, I know just what kind of a relationship I want that to be.

I also know that I might be unrealistic in thinking I can find the perfect oncologist -- and the perfect hospital that he or she might work in. And I know how lucky I am to even have a choice. And part of me says I should stop whining about it all, and that other people have it worse.

But just because other people have horrible experiences, that doesn't mean we as patients should settle for "it could have been worse." Good care should be the standard for everyone.

So, for now, I have an appointment for next month. I'm feeling better today, and I'm still deciding whether or not to take it, or to keep searching for an oncologist that I think I'll be happier with.

Thanks for listening.