The First Symptoms
In July 2022, I was on day two of a weekend party at the lake about an hour from home. We had lodging accommodations, so I’d been drinking. Not to the point of inebriation, but enough that I was glad I didn’t have to drive all the way home. I’d spent the previous evening drinking beer and the entire day drinking Corona Seltzers. I had probably 9 seltzers in as many hours. Again, not inebriated (not even buzzed), but I’d had nothing else to drink all day. The weather went from stifling hot overcast with no moving air to sunny and very windy all day long.
Around 8:30 that evening I went to pee and noticed my urine was dark and there was some debris in the water. I hadn’t turned on the overhead light in the bathroom (which is painted a deep salmon color) and was only able to see by a nightlight near the sink. I thought I was getting dehydrated but was suspicious that I may have peed a little blood. I went back outside where I drank another Corona and soon after had to pee again.
At 9:30 pm I turned on the overhead light beforehand and witnessed myself pee out a blood clot amidst pink urine. I called my wife to come see it because I knew this was going to be difficult to explain especially coming out of seemingly nowhere. I also took a photo. This was concerning.
By 11 pm, the party was breaking up, and I was growing more worried. We said our goodbyes and went back to the hotel. Once there my urine was much darker red and I passed several clots. I also took another photo.
Apart from the blood in my urine, I had no other symptoms. No pain or stinging. I did not have a fever. In fact, I felt fine apart from peeing blood every time I went. I decided to call the nurse line provided by my health insurance. Since this was a brand-new symptom I’d never experienced, I was recommended to go to the Emergency Room. Even without pain, something was wrong, and it might be serious. I insisted on going to the hospital back near home and the nurse agreed that as long as I felt up to it, that would be fine.
I arrived at Southwest General ER and checked in just before 1 am. They took blood and had me pee in a cup. It looked like a murder scene. I had to pee way more than would fill a specimen cup and whenever I passed a clot the urine stream splattered. I had to clean the toilet and part of the floor. I returned the cup to the desk and was warned it may be some time before I was seen.
About 4:30 am, while still waiting in the waiting room, I decided to try to pee again. This time a clot was so significant, it stopped the urine flow for a second before exploding out. More cleanup afterwards. I was also exhausted by this point and wondering how much longer I’d have to wait.
At 5:00 am I was finally called back to an exam room. I was sent for a CT Scan. The ER doctor finally came in to tell me the CT Scan showed nothing significant. My blood test results were also unremarkable. The good news was there were no tumors or growths or blockages or obvious signs of significant issues in my test results. Preliminary suggestion was massive dehydration. I was released with instructions to call Southwest Urology for an appointment Monday morning for a possible bladder scope.
Visit to the Urologist
I had my urology appointment a couple of days later. It went very well. I was no longer peeing blood and had a pleasant conversation with the PA who reassured me that everything was very likely going to be fine. He suggested that my weekend issues were brought on by dehydration and/or over-exertion. He scheduled me for another CT Scan (this time with contrast) and a PSA test.
I was also given a prostate exam. I told him I was glad I’d had a bowel movement today already, to which he replied “It doesn’t matter to me, these aren’t my clothes.”. I appreciated his candor and bedside-manner. Not everyone might have been so open to such a light-hearted exchange, but his sense of humor was just what I needed to relax and start feeling better about the situation. He told me my prostate is slightly enlarged (although normal for my age). Still no good explanation for why I was peeing blood, just more tests revealing that whatever it is, isn’t something big and obvious.
I left with the CT Scan appointment (this time with contrast) to be followed by a cystoscopy appointment. I wasn’t out of the woods, but was starting to feel more optimistic.
Fucking Insurance
In late July, the day before my CT Scan, I was called and told that my appointment was cancelled because my insurance denied the procedure.
Based on eviCore Abdomen Imaging Guidelines Section(s): AB 39.2 Asymptomatic Hematuria and Preface to the Imaging Guidelines, section Preface-3 Clinical Information, we cannot approve this request. Your healthcare provider told us that you have blood in your urine with no other signs or symptoms. The request cannot be approved because:
• A study similar to the one requested has recently been performed. The results of that study showed your doctor what they needed to see in order to treat your condition. No additional imaging is necessary at this time.
– from the denial letter
This little maneuver wasted almost two months of my time. During this time period I’d had another bout of gross hematuria. It resolved within the day, but I was even more motivated to get the next tests completed.
I got my family doctor involved and after a complete physical I was able to get her to push back on the insurance and get my CT Scan approved by mid-September.
The best news? She added a PSA and urinalysis to my physical. All my labs came back fine. Nothing in the urine, blood or PSA to suggest why I pee blood every now and again.
Second Scan and Scope
In mid-September, I finally had my CT Scan with contrast. Long story short – the final line of the scan results read:
IMPRESSION:
Unremarkable CT urogram
In other words: nothing here to suggest why I pee blood.
While I was happy that each successive test was returning normal results, I was getting more and more frustrated that I wasn’t discovering why I was peeing blood. Was this just a new thing I do now? A sick party trick that I can bring on by drinking a few beers?
My last line of testing was a cystoscopy. They were going to look inside my bladder with a camera. And they were going in the hard way.
In mid-October, I finally got the cystoscopy done. While I would never file the experience under “pleasant”, it was not as bad as I’d read it could be. It was uncomfortable, but the doctor was great and told me everything he was doing along the way. The procedure only took about 5 minutes, and soon I was sitting in his office with a wad of gauze around my junk in my underpants. I also peed blood for the remainder of the evening. At least this time, I knew why.
I have a tumor in my bladder. The doctor said that it’s a small, superficial, non-invasive tumor on the left wall of my bladder. (He suggested that he could tell by looking since he’s been “seeing these things for 40 years”). He also drew me a few pictures, which I brought home to try to tell the same story to Carrie. The tumor is flat (which is why it didn’t show up on any scans) and removal should be trivial. I will need to go back to Southwest for outpatient surgery while they go back in through my penis and excise the tumor from the bladder wall.
I noted that this was the first time during this whole process that I heard the word cancer. While the doc did use the word, he assured me that this is not unusual and the treatment plan is very simple and often 100% successful. I told him that I’ve heard the word cancer before with my basal cell and melanoma removals. All the same, this time felt different.
TURBT
Carrie posted this on Facebook on October 26, 2022 (link and emphasis mine)
Need lots of love and positive energy today. For those who don’t know. Chuck was diagnosed with bladder cancer. We are at Southwest Hospital right now so that he can undergo a transurethral resection of the bladder tumor. We are trying to remain positive that the surgeon will be able to remove the tumor today.
I was in the hospital for about 4 hours. Much of that was prep and recovery. I was asleep for the main event. Preliminary results showed a 5 cm, flat tumor on my left bladder wall. The surgeon said it was superficial and low-grade. A quick google search tells me that while it is early stage (superficial) it’s possible it can come back (low-grade). He told both Carrie and I afterwards (in different conversations) that he removed it all. He also assured Carrie that this “is not the type of thing you die from”.
I’m now waiting for the biopsy results, but if the tumor has been completely removed, I guess the results aren’t as important. I still have my follow-up in two weeks and will need to go for cystoscopies every three months for the first year, every four months for the next year and every six months thereafter.
I feel like someone punched me in the junk (much more unpleasant than the preliminary scope) and it stings when I pee. I’m peeing blood (again). All of this is to be expected for the next maybe several days. Otherwise, I feel pretty good. Having identified the problem and addressing it goes a long way in easing my mind. Knowing that I have to follow up on this for perhaps the rest of my life is daunting, but certainly feasible.
I’m now one of those people who advocate for early screenings. Go get your colonoscopies. Go get your yearly physicals. Visit a dermatologist once a year. Unfortunately, there are no screenings for bladder cancer, but if you ever experience any concerning symptoms, take them seriously. It’s never OK to bleed when you pee.
Post Note
After re-reading this I’ve realized one thing that I didn’t make very clear. Between July 2022 and October 2022 I had three distinct episodes of gross hematuria. All three episodes followed an event at which I drank alcohol (sometimes by as far as 48 hours later!) After the third episode, I began to suspect the alcohol was causing the bleeding. I even went so far as to mention my theory to several medical professionals who all disagreed.
Until I told the story to the Pre-Screening PA at Southwest the week before my surgery. She was kind enough to let me blather on for almost an hour, and it did me a world of good getting all my worries and concerns off my chest.
While she agreed that alcohol does not cause hematuria, she theorized that the alcohol was an irritant and was just enough to “piss off the tumor enough to let us know it was there”.
This perspective was a game changer. While I can never advocate drinking alcohol for your health, I can’t ignore the possibility that if I’d decided to not imbibe on those occasions, I may still not know about the little bugger. She told me that I was very lucky to have seen symptoms so early and made me promise to have a celebratory drink once this is all over.