Severe frequency/urgency/nocturia five years after successful radiation for PCa

Hi Tom

Sorry to hear you are having these problems. My husband was the same, virtually no sleep, he then started having urine infections as well. The answer for him was a catheter. It was not easy for him to start with, but now at least he does get a good nights sleep. he also had damage to the bowel with the same urgency and no control. He had treatment for that, which is now much more under control, but has to watch what he eats.

Do hope your problem gets resolved. very best wishes to you.

Howdy,

I am Henry, Gleeson 9, very similar side effects as you.

Please PM me.

Cheers

I now have a second opinion and have confirmed that I have what is called radiation cystitis. It starts about three years after the radiation and can continue for a long time - might improve, might stay the same or might get worse. It feels like my bladder is always irritated and this makes me get up 6-10x per night. Sleep is horribly disrupted and my quality of life is negatively effected.

Five years ago I had two possibilities for treatment of my Gleason 6 cancer: RRP or radiation. I chose radiation. I had read many, many stories of men who suffered from incontinence from their RRP and I decided I would rather have some difficulty peeing rather than not be able to control it - didn't want to wear Depends for the rest of my life. Turns out, this period of incontinence, can last 12-13 months then resolves in most cases. You can learn how to control your urine flow after your prostate is removed. Women don't have a prostate and they can control their flow.

The problem with the radiation, as I found out, is that the side effects can kick in years later. I had prostate swelling after my radiation treatment and had to wear Foley catheters for six weeks. About two years later my penis felt numb, no doubt from nerve damage. My erections faded away to nothing after three years. I began to suffer from typical BPH symptoms, reduced flow, so had to take Flomax to compensate. Had a PAE in 2017, helped a bit, then had a bipolar TURP three months ago. Flow improved.

But, the radiation cystitis feels like severe overactive bladder syndrome and nothing much is helping. I don't mind it so much during the day, but it wakes me up at night and keeps me up.

So, in retrospect, would I have gone with the RRP had I known what I was going to go through years later? I have been seriously thinking about this in recent day wondering if I made a mistake. I have learned that a RRP is a major operation and the success depends strongly on the skill of the surgeon. Radiation is controlled by a computer and is not as much surgeon dependent. Same goes for Proton Beam treatment.

I understand that the statistical probability of radiation cystitis is not high, but I have it and it is really irritating.

Giving all something to think about...

Tom

I just posted an update but the computer messed it up. Here's a similar update that I posted on the BPH forum - says about the same thing:

Re: Radiation Cystitis

I have been learning a lot in recent weeks about my condition (frequency/urgency/nocturia) and my situation is different than others here in that I had radiation for prostate cancer five years ago. The cancer is gone, but this frequency/urgency/nocturia started up about two years ago and despite a PAE and TURP, continues with a present IPSS score of 29.

Here's what I have learned from both my primary urologist and a second opinion: I have what is called radiation cystitis - that is, irritation of the bladder due to the effects of the radiation. It normally starts about three years after the radiation and there is no solid cure - it might improve on its own, might stay the same, might get worse over time. There are some treatment options that have been mentioned on this forum - the most promising is botox injections into the bladder muscles, but that has some drawbacks. Most men here have NOT had radiation for prostate cancer prior to their BPH symptoms, and most of the BPH procedures do fix their issues, at least, to some extent: REZUM, Aquablation, TURP, Urolift, GL etc. However, all these do is to clear the prostate out of the way so the urine can flow from the bladder. Now three months post TURP my flow continues to improve - very glad I had that done. But, the bladder irritation and lack of sleep continue to be issues, especially getting up 6-10x per night.

I had two choices in 2014: prostate removal (90% of all men have this done), or radiation. I chose the radiation because of all of the stories I read about the long recovery from RRP and the possibility of permanent incontinence. I decided I would rather have some reduced flow than to not be able to control the flow - didn't want to wear Depends for the rest of my life. But now, I am rethinking my decision. Turns out it can take a year to get back full continence after a RRP, but after that, no prostate, no BPH, no radiation cystitis. Had I made that decision I would never have had the PAE, or the TURP, and now, maybe, I would be sleeping through the night. Who knows?

So, for those of you who have elevated PSA and find out you have prostate cancer, I'm giving you some additional things to consider. I am not promoting either RRP or radiation, just letting all know that my cancer is 100% gone, but the side effects have been rough over the past five years and continue to this day.

Tom