Hi Sara Anne,
Thanks so much for your insights. It’s especially good to hear from a knowledgeable person in my own backyard.
As for my precise diagnosis, I’ll know more in about a week. I’m going in for tests today and also next week. I’m a 61 yr old man with gross hematuria. I had my first bloody pee in March, just as the pandemic was heating up. My primary-care provider ordered a urinalysis 12 hours later, which found no blood in urine. She told me to come back for a re-test in three months. And that’s all she did. Then two weeks ago, I had one more gross hematuria incident. Just like the first time, my urine stream started out bright red and then turned normal yellow during the pee. Since then, my urine has looked normal again.
Last week my primary-care provider ordered an ultrasound (which found nothing wrong) and referred me to a urologist. The urologist ordered a CT scan, which takes place today. He told me that depending on the result, I’ll either get a cysto next Thursday, or if the CT scan shows an anomaly, he’ll skip the cysto in favor of just going in there and scraping out the tumor. (Does that sound like a good game plan to you? I really don’t know. This is all new to me.)
So far, I’ve been disappointed in the health care I’ve gotten in Portland. My primary-care provider seems very lacksadasical about the gross hematuria and basically left it up to me as to whether to see a urologist or not. When I contacted a urology clinic locally (not OHSU), I explained the situation and was told to come in for a cysto. That alarmed me, because I have a history of chronic pelvic pain syndrome, and I wanted to find out if there was some less painful alternative to that (I now know there’s no getting around cystos).
The clinic receptionist said, “Well, we can arrange a virtual visit (over the computer) so you can talk it over with a urologist.” The next day I had the virtual visit and then later called the clinic and requested to see a different urologist that I’d heard very good things about. The answer I got was, “No, you can only see the doctor that you had the virtual visit with. We don’t let patients switch from one doctor to the next. “
I explained that I thought the virtual visit was simply a preliminary information-gathering session. I didn’t realize it meant that this urologist and I would be married for life. The clinic wouldn’t budge. So much for patients picking their own doctor.
So if I stick with that particular clinic (which is covered by my health-insurance provider), I’m stuck with that virtual-visit urologist for good; he doesn’t have the most glowing reviews online. But for expediency sake, I’m at least temporarily relying on that urologist to order my CT scan and do the cysto next week.
Consequently, I’m now trying to get my ducks in a row and find a better doctor at another clinic if the diagnosis is bad. And I’m trying to do my homework so I don’t inadvertently lock myself into a doctor at another clinic the way I did with the first one. Online, I’ve read good things about OHSU. But OHSU’s urologic oncology department will only see patients after they’ve first had a confirmed cancer diagnosis. That’s why I need the virtual-visit oncologist at least for the time being. Janoff on Barnes Road sounds really good, but he would be too hard for me to reach logistically. I don’t own a car and rely on public transit. Fortunately, OHSU is just 12 minutes from my house by bus.
Do you know any other local resources I should be aware of?
Thanks very much for your input.