These routine appointments are a bit like Groundhog Day. If the doctor doesn’t see my shadow, then the cancer is considered in remission and it’s three more months of dancing happily in the sun for me, and then the whole process repeats. I repeatedly wake up to “I got you babe” playing on the clock radio, go get a blood test, and wait anxiously for the results. Every. Three. Months. At least that’s how it’s supposed to work.
It’s perfectly normal to have some anxiety about these appointments. If signs of cancer are found it can mean more tests, changes in treatment, surgery, radiation, who knows. The new normal life I’ve been building gets thrown out the window. It’s quite a bit like applying to college every three months. There’s the nervous anticipation of not knowing, and thinking about how drastically the future direction of your life depends on the answer.
So when I went to the mens room on my way to my oncology appointment, and saw pink lemonade going into the urinal, my heart sank. Blood in urine, or hematuria, really gets doctors’ attention. They like to run more tests. This was actually the exclamation point on the gradual change in my symptoms from “strange sensation”, to “discomfort”, to “painful urination”.
Here are some interesting stats: Blood in the urine usually has a non-cancerous explanation. But if you do have bladder cancer, there’s an 85% chance you will see blood in your urine at some point, and a 99% chance you’ll test positive for blood in urinalysis. It’s very treatable if caught early, so it should be high on the list of things to check when there is blood in urine.
When I mentioned this latest development, my oncologist literally tossed me a container for a urine specimen and said “Merry Christmas” while it was in the air. It came back positive for blood and negative for anything else of interest.
My blood test results were fantastic. PSA < 0.01 (no detectable prostate cancer activity), alkaline phosphotase at 43 (no meaningful bone activity), no anemia, etc., etc. If my prostate cancer is doing anything it’s going about it quite discretely. My blood looks absolutely marvelous, except when it’s in my urine. So off to the urologist for what really is a urology problem.
The standard procedure at the urology office is to pay your copay and give a urine sample. Apparently anxiety makes my symptom worse, because this was a super painful urination. It’s the kind of pain that makes you want to jump around screaming then curl up into a fetal position. It’s hard to stand upright when the pain hits. And here I am with a half full specimen container in one hand, and using my other hand to aim the rest of my bladder contents into the toilet bowl and trying not to water the walls and the floor and spill my sample as my body wants to convulse. Too much information I know, but it’s one of those moments where having cancer feels like a screwball comedy movie.
Back to my appointment. I like my urologist. When something is worrisome to him, he is extremely proactive. He moved up my CT scan and biopsy after seeing my PSA test. My bladder surgery was about two days after after my bladder cancer diagnosis. When he sees a problem he takes action immediately.
The only thing I don’t like about him is his tendency to want to stick things into that most personal of male body parts. So of course, when I say “it hurts when urine comes out”, his response is “can I stick a scope in there?” And wow did this cystoscopy hurt! The nurse was telling me to relax and breathe and I muttered something about childbirth in reverse.
Good news! My bladder is still marvelously clear of any growths, but while removing the scope the doctor found the source of the blood. I have friable tissue in my prostate, but it can be removed by fulguration if it doesn’t resolve on its own. Huh, what? I have fry-able tissue that you can, um, fry?
The wonderful thing about the internet is that after my appointment I was able to see his notes from my appointment and use the internet to look up terms. “Friable” actually means “tissue that readily tears, fragments, or bleeds when gently palpated or manipulated”. If I understood the urologist correctly, it’s quite common after radiation, except I didn’t have radiation to the prostate. When I asked if it could also happen due to chemotherapy and hormone therapy, he didn’t immediately dismiss the idea, as he’s done with other ideas I’ve had.
So my cancerous prostate has tissue that easily tears and bleeds, which is in a way is a huge “no duh!” The optimist in me sees this as being a logical result of cancerous tissue shrinking and dying off. My proactive urologist told me to come back in four months, but to call him if it gets worse in the meantime. I’m not having any trouble with urinary retention, and with that undetectable PSA it’s highly unlikely this is the result of active cancer. In summary, no need to worry at this time. Now I can truly celebrate my undetectable PSA!
There’s a small chance this problem is a side effect of Xgeva, and after months of lobbying my oncologist he finally agreed to reduce the injections from every four weeks to every eight weeks. So maybe by the time February rolls around this will all start going away on its own.
If it doesn’t go away I can have surgery to remove the offending tissue and have it sent for biopsy. I have mixed feelings about this, as I’d like to avoid anesthesia and if this friable tissue is just the tip of an iceberg then how could it be a permanent solution. But it is an option.
Then it was back to the office to finish my workday. How do I respond to smalltalk when people ask “Hey Tom, how’s things?” “Oh, I’m pissing blood today, how are you?” “I just had a cystoscopy during lunch, and you?”
It’s more than just small talk. Prior to my appointment, when we were discussing plans and schedule, how much do I say? That appointment could have led to all sorts of other appointments, tests, or even surgery (which is still a future possibility). This time, I said something like “I have an unexpected medical appointment, and there may be more after that one”. It’s factually accurate and doesn’t go into any details. My read of my coworkers is that they are truly interested in my cancer journey, but perhaps not so much about some of the more personal details I love putting into this blog.
So that’s just the first 10 days of the new decade. Let’s hope the rest of January is a bit more boring!
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