After my CT scan, the first doctor I saw was a surgeon here in Sheboygan. My sources said he was an excellent doctor, but at that point my diagnosis was still unknown, only that there was a "mass." This surgeon wanted to operate right away. A couple of my co-workers who had serious health experiences of their own urged me to go to Froedtert, down in Milwaukee, for a second opinion. I was kind of in a haze then, and almost didn't go. But I did, and at Froedtert they were at least able to put a name to the mass. Once I learned what condition I had, and I managed to get my brain back and working enough to do some research, I quickly found that only a handful of doctors in the U.S. have real experience with this disease, and that it is a quirky and tricky condition to treat. The surgeon in Sheboygan would have been fine if it was just appendicitis, but I felt better with the Froedtert surgeon and Froedtert's specialized clinic at that point.
Luckily, the websites relating to this disease list the doctors that others have used for their treatment. But still, how do you pick the one to cut you open? Do you go to D.C., New York, Maryland, Cincinnati, San Diego, Pittsburgh, Omaha, Houston? I don't know. I participated in a webinar with a doctor from Pittsburgh, he was very approachable and engaging. I spoke to him on the phone a few days later, and I felt very confident about his abilities based on his patient references and reputation. His hospital does the most cytoreduction/HIPEC procedures in the country, I guess. But is that good or bad? I met with the only doctor in Milwaukee with any experience with this disease, but I just don't know if he has enough experience. How do you make a decision like that? If something goes wrong, do you second guess a decision to stay close to home but with a less experienced doctor and hospital? I think the best I can do is do my research, talk to 3 or 4 doctors, and then hope my brain is leading my gut.
I'm going down to the M.D. Anderson Cancer Center in Houston on Sunday, for 3 days of tests and to "interview" one of the doctors down there. I'm kind of excited, and of course nervous too. One of my fellow PMP patients warned me not to be freaked out by the "assembly line" feel of parts of that clinic, being that it is so big. And of course, Houston is warmer than Pittsburgh or Milwaukee in January, which is when I want to have the surgery!