Not to get off track here but to follow c’s comments about doctors, I learned a lesson the hard way years ago when one of my brothers had cancer. At age 46 he was diagnosed with an inoperable brain tumor. They couldn’t define what kind of cancer it was, apparently something that back then was the case about 15% of the time, One of my mother’s friends, a nurse, told me he needed a medical advocate. I didn’t understand why that would be given he was at one of the top hospitals in Florida. Surely they would dig deep to solve the mystery as to what he had and pursue all of the available options. Nope. No further analysis or testing to see if the cancer was anywhere else, just intense radiation therapy on his head which failed, and a message to get his affairs in order. He was then back with only his primary care physician, He develops back pain and gets referred to a specialist who discovers cancer in his bones, again with no testing or analysis of what else might be going on. Only looking to treat the bone cancer. He develops additional symptoms and gets sent to another specialist who finds the cancer is in his liver and is going to start treatment for that, again with no plan to look at him in his totality. He died before the back and liver doctors could really get any treatment going. None of the doctors involved ever focused on anything but their one specialty, nor did any of them coordinate with each other. It was as if they saw their particular issue as the only problem he had. All of this occurred across a 6 month period. Our family friend nurse was right, but I was ignorant at the time as to understanding where she was coming from. I vowed never again to just blindly trust doctors.
Fast forward a few years and I am diagnosed with bladder cancer just prior to turning 52. My primary care physician is going to send me to a local urologist and I say no, I want to go to an oncology urologist in Boston and to find me one. He makes a recommendation and after researching him I say yes. He was head of urology at one of the major hospitals, taught at Harvard Medical School, and was the one of the country’s primary bladder cancer researchers. It proved to be a good thing because it turned out that I had a rare and very aggressive kind of bladder cancer, the highest grade. After my surgery to remove the tumors (fortunately my bladder was saved) he followed up with additional biopsies and ordered a year’s worth of very aggressive treatments to make sure it was totally killed off. He also ordered additional tests to make sure the cancer hadn’t spread anywhere else, and as part of my ongoing monitoring which will go on for the rest of my life, he periodically will do full scans of my abdomen to make sure nothing else is going on. It might have turned out differently had I just deferred to the primary care physician’s initial referral to a local urologist.