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Know a good urologic oncologist in Portland, Oregon?

6 months 3 days ago #59430 by sara.anne
No one really knows how long a tumor might have been present. Probably for a long time before it would become symptomatic. They don't usually just appear overnight.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 months 4 days ago #59429 by Firefly
Hi Sara Anne and Alan,

Thanks very much for the encouraging words and for sharing your real-world experience. It really helped put things in perspective for me. I most appreciate it. Yes, anxieties notwithstanding, I'm definitely planning on the cysto(s).

My big concern is, if there is a tumor, I wonder how long it might have been in there. I've had two incidents of gross hematuria that occurred two months apart—the most recent one two weeks ago. So whatever's bleeding, it's not bleeding often or easily, which makes me wonder if a possible tumor might have been quietly growing in there for awhile. I know I'm getting ahead of myself. But more than anything, that question is fueling my current anxiety.

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6 months 4 days ago #59428 by sara.anne
Your “diagnosis “ does answer a few questions. There are many reasons for urinary blood and bladder cancer is just one. Many times a reason is never found. It is good that you are going to a urologist since it could [/ be cancer. IF the CT scan shows evidence of a tumor, I wonder is that would be enough for OHSU? While this is not something to let go, taking a couple of weeks to find the right doctor will not cause any problems.

It is important to find a urologist that you feel comfortable with since he/she will be your “best friend “ for the foreseeable future. And Alan is right....if it is cancer you will also get very well acquainted with cystoscopies!

Please keep us posted.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 months 4 days ago - 6 months 4 days ago #59427 by Alan
I see Sara Anne has replied with good info. I'll add my 2 cents worth. The CT Scan is good to rule out or possibly in other urinary tract issues as well as helping look at the bladder. At the same time a cystoscope is almost a necessity as there are two primary bladder cancers. One is called papillary...sort of mushroom looking that the scan usually will ID if big enough. At the same time there is a flat tumor, almost rash like that a CT Scan normally won't reveal. The cystoscope is important to do for those reasons. I hear you as a man that the scope is no fun going through the prostate but, I always tell myself it is more "uncomfortable" than real pain and over in less than 30 seconds passing through. I have probably had 15-18 of these "lovely" tests. Keep in mind that there are many reasons for hematuria so there is a good possibility this is not bladder cancer.

You will get to the bottom of this. IF it is bladder cancer this is very treatable and beatable.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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6 months 4 days ago #59426 by Firefly
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.

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6 months 4 days ago #59423 by sara.anne
I live in Portland and am a now 12 year survivor of bladder cancer. I am not personally familiar with the urologists currently at OHSU, but if that is where you want to be treated I would just call and describe your issues. In a medical school environment there is a collegiality so that if your problem is complicated it will be discussed by the entire team.

What is your diagnosis? If you have any questions at all about the way you are being treated or issues with communication with your doctor now is the time to switch. Since the usual treatments for bladder cancer unless it has spread beyond the bladder are quite different from many other cancers oncologist are not usually involved.
I would want a urologist who treats a lot of bladder cancer patients since many make their living from prostate cancer.

My urologist, Dr. Daniel Janoff, practices at St. Vincent's and when I first went to him he had recently finished his residency at OHSU (now, 12 years later, he is getting gray hair!!)

Let me know who you decide to see if you go to OHSU.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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