Length of incontinence after radiation treatments for prostate cancer?

Above question refers to 28 radiation treatments for prostate cancer cancer…

Hi...sorry you're not getting any responses and also sorry I can't help because I start radiation treatment next week and sure would like to see some answers. I do have a question though. Prior to radiation, did you have any issues with urine retention? I ask because I have not been able to urinate without a catheter since March and still self-catheterize. My medical team says that radiation should shrink the tumor so that I can pee on my own again. I'm wondering if that's what happening in your case. Best wishes and Thanks!

I had radiation treatment and did not experience incontinence. It's an uncommon side effect of radiation (usually, it's the opposite, trouble urinating and a weak stream which is what happened to me).

How long ago was your treatment? I've read that incontinence from radiation, when it does occur, can last 6-12 months. Look into doing pelvic floor physical therapy. It helps with both incontinence and sexual function. Sorry I can't be of more help.

@faye8
What type of radiation did you have photon or proton?

Did your medical providers not go over all the side affects and available treatments. If not you really need to asked those questions to them.

I had 30 rounds of proton radiation back in 2023. I had increase urination, increase urgency, and dribbling. What my providers told me had medications to help with those side affects.

However there are a lot of things you can do personally to help with this. And I am speaking both from what my medical providers told me and what I learned to do.

Monitor liquid drinking knowing that you are going to want to void so do some planning. Try to go to bathroom when you feel some urgency not strong urgency. I used to pee when I could to help with this. Go on web sites and learn about kegel exercises. They really help with incontinence. I did those and helped.

It is going to take some time for your prostated to relax after being put through WWIII radiation bombarment. You should have been given the side affects and what can be done about them. Just know your post is not uncommon and most of us went through this.

How long will it last. Depends on the individual. We are all different with different cancers, different prostates, bladders, etc. and what one's experience is my not be yours. So talk to your doctors about your side affects and as I posted there are many medication to help with this along with personal things you can do.
Good luck,

I had 39 sessions of VMAT. No incontinence or other urinary issues.

@jc76 I’m reaching out because I’m trying to learn more about Proton vs Photon radiation, and I saw that you went through Proton therapy. Did you choose it hoping it would cause less damage overall? I’d really appreciate hearing what your experience was like and how you’re doing now a couple of years after treatment.

I’m in the middle of making the same decision. If I go with Proton therapy, I’d have to move away from my family for about 7 to 8 weeks. I’m willing to do that if it truly makes a difference long term. The Photon option is only about 10 minutes from home, which would make things a lot easier day to day. I’m 58 and just trying to make the best choice for the future for me and my family. Any insight from your experience would mean a lot.

I had RP followed by SRT 2yrs later. Mild incontinence following RP. Gradually worsened after SRT. Now 8yrs post SRT using pads changed 3 times during 24hrs. Visiting toilet every 3 hrs during night. 5hrs during day. Not improving.

@jc76 Medications for incontinence also have side effects. It is a trade off.

There is NO definitive answer to this question, unfortunately. Ask 1000 men and you will get a range of zero side effects to terrible ones lasting months or years.
I had 25 treatments and had no incontinence at all - even at 8 months post treatment. But even THAT could change down the road. Don’t let it affect your decision one way or the other if IMRT is what you want.

@tj1967
Sure be glad to help.
Yes to your question. I specifically went with proton radiation that the possibility of reducing radiation damage to other organs and tissues. I learned the difference between the two directly being briefed my Mayo R/O, UFHTPI R/O and my Mayo PCP.

I am a patient of Mayo Jacksonville since 2006. It is where I was referred to urologist by my PCP, who did MRI/contrast, who then did biopsies and cancer diagnosis. I then had consultation with Mayo Jacksonville R/O could only offer photon radiation. One of the statements told to me during that consulation was "oh any secondarr cancers caused by this you would not have to deal with for 10 years."

I did not like that but it is a direct experience from a R/O about photon radiation. My PCP (Mayo) wanted me to consider proton radiation available at UFHPTI. He said he refers a lot of patients there and then they can choose which one to go with. I did the second opinon like what I was told about proton and then met with my PCP. We went over the pros and cons of both and we came to same conclusion that proton radiation was best for me.

At 58 you have a long life ahead of you. I am 78 had my radiation done at 76 at my PSA is not at the undetectable number. I can suggest you do research and get the pros and cons of each. It appears you have already had a consultation at both photon and proton and know the differences. If you don't I can pass on what my R/Os told me and is included in their handouts to me.

I drove over an hour to UFHPTI where Mayo was only 25 minutes away. It did not matter I just wanted to do anything that would possibly reduce radiation damage to other areas of my body.

Another person on MCC asked me about UFHPTI as he lived in South Carolina. He had the same issue, go close for photon or stay at a hotel during his radiation treatment at UFHPTI. I asked him to get the free information packet from UFHPTI as contains tons of information and research along with two prostate cancer books. Then do a consultation and decide what is best for you. He decided on proton and UFHPTI. His treatments are over and his PSA levels have been cut in half and continue going down.

tj1967. It really has to be a personal decision. You know what is important to you and your family. Those on MCC do not know your medical and mental health history thus that and your family are critical for you and your decision.

If I had it to do over again I would do the same thing. I want to pass on to you that Mayo Jacksonville is building a new cancer center that will have proton radiation treatments. They hired 3 R/O from UFHPTI to set it up and run it.

New forms of photon radiation try to turn the beam in and around organs. But there is no change to photon going into your body full force, and exiting full force. Proton enters body low dose, releases it's full dose at specific programmed place and stops. It does not continue through body.

You will read information and from posters that both have the same succesful treatment outcome. The long range studies (UFHTPI got a 25 million dollar federal grant to do such a study and I am an participant in that study) will try to define the long term affects of both and the significant difference. I don't have the exact number in study but I know it is several thousands of participants.
Good luck, and if I did not answer a question fully or you have others feel free to asked me on forum or even private message.