Posted 10/17/2018 1:20 PM (GMT 0)
Brachy Horror Story.... Read All about It
This is the LDBT warrior who wrote the originating post of this thread. My last post was 17 months ago on May 22, 2017.
These last 17 months have been horrible. The side effects that resulted from my LDBT have been truly dreadful and debilitating. In fact, I deliberated a long time before I decided to post my story, because I was afraid that it would turn some people off on brachy, when, in fact, it is a perfectly good treatment choice that should be viewed in a positive light. But for me, it was an unmitigated disaster.
As stated in my original post, I had the LDBT procedure done on May 7, 2017. It was done at a prestigious hospital by a reknown radiologist. It succeded in eradicating my G7 cancer and, today, my PSA is .01.
But the treatment has caused me terrible side effects. At first, the side effects were tolerable, but, as the weeks passed, they became worse and worse. I was given encouragement and hope by the personnel of the radiology section that performed the procedure and was told to hang in there, that, eventually, the burning pain, urgency, frequency, and loose stools would subside as the radiation of the seeds dissipated over the course of 5 months or so.
Distressingly, on the night of June 23, 2017, I found myself in TOTAL urine retention. I could not pee even one drop. I thought for sure my bladder was going to burst. The pain was beyond description. At 3AM, my wife drove me to the closest hospial that had an emergency room. There I had to scream and cry to get immediate attention because the place was packed and understaffed. Finally, a Foley permanent catheter was installed and I felt instant relief.
I was tethered to the Foley and its urine collection bag for 24 days. It was no picnic either. Foleys cause bladder spasms in some people (I was one of those "some" people). I was having 8 to 12 spasms per day. Ever had a bladder spasm?? Geez, they hurt big time. In fact, I've read on the internet that some women have claimed that the pain of childbirth is the only pain worse.
The hospital where I had the brachy done referred me to a urologist at their satellite hospital here in South Florida about 40 minutes from where we live in Miami, FL. This urologist removed the Foley and had me instructed as to how to use a self-administered straight catheter when I had the urge to pee. She said that no TURP procedure could be done for my urine retention until 3 months after the theoretical exhaustion of the brachy radiation, and that would be February, 2018. She prescribed Finasteride 5 mg, Flomax (2 per day), one Aleve per day, and Quercetin 500mg with Bromelain, an alternative medicine supplement with anti-inflamatory properties.
I did the intermittant straight cath procedure 6-9 times a day for 283 days. Without it, I could not possibly empty my bladder or, much less, pee a drop, because I continued with total urine retention.
However, within the first two weeks or so, I became an expert with the straight cath; a cath virtuoso, if you will. Doing it became second nature to me. It improved my quality of life, no pain, no spasms, and more control over my condition. The only negative was that if I left my house, I had to be sure I was always near an establishment that had a clean restroom so I could do my self-cath, if I had to, without being fearful of picking up an infection. I always planned my errands and routes around those places with clean restrooms. Even with the care I took, I had a bout with a UTI in December, which was resolved with a course of Cipro.
When February, 2018 finally came, my urologist scheduled a cystography, which is a micro video camera inserted through the urethra by means of a lubricated snake. The cystography found the urethra pretty well plugged up with prostate tissue and when she inspected the interior of the bladder a small tumor was found. She scheduled TURP for March 30 , 2018.
I underwent the TURP under general anethesia and, as per the procedure's protocol, a large diameter Foley was installed and a course of Cipro was prescribed. Lot's of pain. The darn bladder spasms had reared their agonizing heads once again for the two weeks the Foley was in place.
During the TURP, she scraped off the small tumor in my bladder and sent it to pathology. It turned out to be a very low-grade tumor and no treatment was recommended except for continual monitoring by cystography every three months or so.
When the Foley was removed on April 9, 2018, I was able to pee enough to almost completely empty my bladder, albeit with a very weak stream. I averaged a urine remnant of about 100ml, which is not great, but it is acceptable.
I continued like this, having to pee about 17 to 23 times per day with urgency. But I was averaging about 1700 ml of output per day, so my kidneys certainly were doing their job, and I was not experiencing a bloated feeling in my bladder. My quality of life was acceptable to me considering what I had gone through.
However, little did I know that my ordeal was far from over.
When I prepped for my follow-up, cystography for bladder tumor monitoring on August 9, 2019, this "Cath Virtuoso" got the "brilliantly stupid" idea of doing a self-cath an hour before the cystography was scheduled, so that the urologist could see better in my bladder. What a humongous mistake. Somehow, with my self-cath, I messed up and clogged up the tunnel of my urethra with loose prostate tissue and the urologist was not able to traverse the urethra with her snake and, worse, I could not pee and no cath could pass through the urethra.... total urine retention once again. An emergency TURP was immediately scheduled for that evening. I went under general anesthesia at 1:00AM.
Once again, two weeks with the large diameter Foley cath, the spasms, the pain, and the Cipro protocol.
The good news was that no tumors were found in my bladder and, as far as the clogged up urethra, what had happened was that, with my straight cath, I had pushed and jammed some debris from the first TURP in such a way as to clog up my urethra.
My next cystography is scheduled for February, 2019. I hope to God it doesn't mess up my urethra once again. For certain, I will not be doing any self-administered self-caths beforehand or ever again.
Today, I had a colonoscopy done (I suffer from colon polyps and I have to do a colonoscopy every five years). After the procedure, the gastroenterologist informed me that he had found five polyps that appeared to be benign BUT he had found signs of "burnt areas" in my rectum. He asked me if I had undergone radiation therapy on my prostate. I answered affirmatively. He told me that I am at risk for rectal cancer and that I should increase the frequency of my colonoscopies and have one done every three years just to be sure. Oh, great, I love having to go through a colonoscopy......not.
I now can pee and empty my bladder sufficiently, although with weak stream. I am peeing 12 to 17 times a day with a total output of about 1700ml per day. I have become accepting of my condition and, if I can maintain the status quo, I will be satisfied.
What a bloody nightmare this has been. Maybe for most, brachytherapy can be a wonderful treatment alternative. But for me, it has been the exact opposite. Perhaps, the radiologist was overzealous with the number of seeds he placed???? Burnt areas in my rectum..... a small bladder tumor? Should I be in panic about the possibility of bladder and/or rectal cancer???? In my pessimistic moods, I tend to think so.
Sorry for the excessively long and gloomy post.
Sleepless in Miami