Length of incontinence after radiation treatments for prostate cancer?

I had bladder urgency for a couple of months but the worst was bowel urgency which made my bladder urgency seem like an afterthought. For the bladder I took Oxybutynin which worked well for me.

I had 28 treatments of photon/IMRT and have significant side effects with urination and bowel movements 7+ months later. If I had done my homework I should have found somewhere to go for proton/IMPT treatments because of this data. Protons have unique physical properties, allowing for even better dose sparing to surrounding healthy tissues, especially for cancers in the head and neck.
The comparison between IMPT and IMRT often highlights IMPT's potential for reduced toxicity and improved quality of life. My quality of life has suffered as I need to be by a bathroom every 2 hours when drinking liquids and it burns when I go. My bowel movements are 3 times a day now with lots of gas. The oncologist that did my treatment plan really fried my insides. My PSA has already dramatically dropped so I am convinced what he did was overkill. The oncologist I see now said he is very surprised how fast it went down. Anyway, Good Luck with your treatments.

I had 44 photon radiation treatments of pelvis and prostate. No urinary incontinence; mine instead has been chronic diarrhea following radiation and continuing in my ninth month of Orgovyx. I do urinate pretty frequently, including 3-4 times overnight. Sorry for the issue and wish I could be more helpful!

I had 28 sessions of proton radiation and didn’t experience incontinence.

In fact, my experience went the other direction —> I only had 1 day of adverse side-effects during my 28 sessions of proton beam radiation treatments (during April-May 2021). On the 3rd day of treatment, I had urinary issues (difficulty urinating). My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. Everything cleared up by the next day; I haven’t had any issues since.

If you do have incontinence following radiation, how long it will be there and treatments available all depend on what’s been damaged and how badly.

@brianjarvis
You have a great doctor like mine. Being advised of what is causing it goes a long way to dealing with it. The inflammation was also told to me as the probably cause. Many medications and lifestyle changes can help which your medical providers can to over with you.

@suzdog
Unlike decades ago there are many experienced proton medical facilities today. Medicare and most insurnance now cover proton unlike even a decade ago most did not.

I was throughly briefed by Mayo R/O and UFHPTI the major difference between photon and proton radiation. They both have the same success rates but the main difference is the radiation stopping at programmed spot (Proton) versus conintuing through body and through normal tissues, organ, bonds like Photon does.

Based on that I chose proton. It meant a hour drive to and hour drive back versus 20 minutes to Mayo Jacksonville but Jacksonville could only offer photon radiation.

@jc76 I’m sorry that you did not understand my post. You have posted a lot of great information, but your statement that photon energy leaves the body at “ full force” was not correct. Photon radiation weakens progressively as it passes through the body. A substantial amount still exits the body, but it is a much weaker dose than that which entered the body. As you noted, proton releases its energy at a specific point (Bragg peak) with little to no energy leaving the body.

@jc76 Yeah. Like I said I wish I would have done my homework instead of relying on that oncologist I went to. If I could give anybody advice it would be to do your own research. The people administrating the different treatments are running a business and they treat it. as such. I am still dealing with my provider with understanding all the co-pays they charged over and above each treatment session for other stuff. It always comes down to $$$$$$$.

@dgd1953
Agree, my post was to try and help those considering each type and what the radiation beam differences are. I was asked why I chose proton over photon.

Photon radiation enters the body at a programmed strength, that does not change like proton. The programmed photon radiation cannot be changed from it's full strength it was programmed to throughout it's journey entering, hitting target areas, and continuing out the body. Many new short term treatments use a higher dose and shorter treatments.

The intensity or should I say the strength the photon beam after it passes through skin, prostate, other organs, bones, and finally exits body the strength of that radiation beam will definetely be affected (strength) by what is passes through on it's jouring out of the body. But the programmed intensity from entry strength cannot be changed or stopped unlike controlling the proton beam strength and where it stops.

When I had my proton radiation I asked if they would radiate my entire prostate or just the areas they found cancer. I was told they would treat my entire prostate and margins. He explain they do that to make sure the do not miss something in prostate or in the margins that may still have cancer cells. Thus in my case my entire prostate was treated as well as the margins outside my prostate even though my PSMA showed no cancer outside the prostate.

Having the radiation beam continue past my prostate and margins was not something I wanted to do if I could help prevent additional radiation damage to other organs, bones, tissues. I was told even with proton there is always going to be some residual damage beyond margins but the beam stops unlike photon which continues throughout the body until is exits body and continues.

I hope those reading posts and considering which to do reads both posts as photon radiation stength does get affected by what is passes through on it's exiting journey out the body. Proton is a highly controlled beam and does not continue past the programmed spot.

I am an ambassador for UHFPTI for those considering proton radiation there. I will definetly make sure I use different wording to make my post or talking to them to reflect what you posted, thank you.

Same thing. 28 radiation sessions, and 2 years of Eligard. That was 2 years ago, and still
endless peeing. If I dehydrate I can cut it back some. How can a 16oz bottle of water turn
into a half gallon of urine. I'll never understand it.