Saturday, April 5, 2014

What Could Possible Go Wrong?

Or…What’s the matter with my bladder?

My February 21st Blog talked about all the good results from spending part of our winters in the Arizona desert sun relaxing. All true. Still true. But shortly after that Blog the fickle finger of fate reared its ugly head (bad metaphor?).

Later in February, while still relaxing in Arizona, I had several bouts with what we (me and three different Urgent Care doctors) thought was a urinary tract infection (AKA UTI). High dose antibiotics (three different types) seemed to help for a few days or even a week but the blood and blood clots in my urine returned. I was getting worried.

Then one memorable night I had a total and painful urinary blockage. We took a long trip to the nearest Emergency Room our GPS could find and I had a large uncomfortable catheter inserted (which actually resulted in great relief). It stayed in for a week until I could see a local urologist. He removed the catheter (good to have it gone) and told me I did NOT have a UTI. His preliminary diagnosis was something I’d never heard of—Radiation Induced Bladder Cystitis. Nobody had ever told me that was a possible radiation side effect! Google it.

It turns out that men who have had Radiation Therapy as part of their prostate cancer treatment have a rather high risk (couldn’t find specific statistics) of “Radiation Cystitis.” What is it, you ask? I asked too. In a nutshell, if you had radiation therapy, whether or not you still have a prostate, the radiation might have damaged the inside of your bladder. And four or five or more years later (nine for me) small damaged blood vessels can break causing blood to accumulate, clots to form, and this can block the sphincter opening into your  urethra. You cannot urinate! Ouch!

And if it happens once it is likely to happen again and again. I had two more blockages shortly after the first one but none in the last month. Per doctor’s instructions I cut down on all the things that might irritate it, such as running, off road Jeeping, and hiking (all the things I like to do). Lifting, jumping, and riding long hours in a car can exacerbate bleeding, too.

Treatment and cure? Not likely
There are some treatments to help in really serious cases and you could always wear a catheter and urine gathering bag most of the time. There are single use catheters you can personally insert in an emergency (I have a few). I’m back home again and have seen my urologist, viewed the inside of my bleeding bladder in living color on a TV screen, and had a CT scan to rule out even worse things like cancerous tumors in my kidneys or bladder. Now I need to figure out what I can do and can’t do to minimize the risk of nasty clots while I get back to doing the things I like to do.

If you had radiation as part of your prostate cancer treatment you may be at risk. Talk with your doctor and look up the details online. Murphy’s Law seems to be alive and well! But as my blue prostate cancer wrist band says, “Never give in.”

axman



4 comments:

Unknown said...

I have have had bladder cystitis. But only with mild blood in the urine, no pain or blockage. I'm sorry to hear yours was so severe. I was hoping mine would heal over time, but I guess not. long car trips really affect me.

Larry Axmaker said...

Do you have any tips on how to keep the blood flow at a minimum? Maybe yours will heal over time--hope so.

Unknown said...

Larry I have just been diagnosed here in Australia with radiation cystitis. Same events you have described over the past 4 months. My radiation treatment was completed 16 months ago. I will be undergoing treatment in a hyperbaric chamber soon for approx. 4-8 weeks. The treatment is well known and can be googled for information. There is supposedly 80% successful cure rate with this treatment. My specialist informs me that with the improved radiation treatment these days that they rarely see this side effect (guess I drew the short straw) They still see a fair amount of bowel issues though related to radiation treatment that is treated also in the hyperbaric chamber. I have to undergo a colonoscopy prior to treatment to check on the bowel issues as well. This will determine how long my treatment may be. By the way: I was diagnosed March 2012 gleason 9 (5+4) 18 out of 18 core samples all were Gleason 9 and 80% to 100% tumour volume. PSA was only 4.4??? no obvious Mets but enlarged lymph nodes noted. Perineal invasion present as was lymphatic vascular invasion. Treatment has been Turp, ADT (Eligard)and Radiation treatment.
Lots of fun this stuff. Good luck in your neck of the woods with the treatment I have described here. I look forward to how you get on. My email address is seafari2@bigpond.com if you feel like dropping me a line. Cheers Mate
Lee Gallagher

Larry Axmaker said...

Lee, Thanks for the post. Sorry about your prostate cancer.
I checked into the hyperbaric treatment and it's not appropriate for me. And the information I found and comments from my urologist did not support the 80% cure rate. I had a recent colonoscopy, CT scan, and lots of blood tests and there is no cancer anyplace in my urinary system except for my lingering prostate cancer cells.
When I had my prostatectomy (11 years ago) my Gleason was 7 and my PSA was only 4. Prostate cancer moves in mysterious ways. PLEASE let my know how your treatments progresses.