Length of incontinence after radiation treatments for prostate cancer?

@faye8 I had 28 treatments at 2.5 gy each. I am not incontinent but I have to go every 2 hours and it burns. I also have bowel movements 3 times a day. It has gotten worse over the last 3 months, my treatment ended 7+ months ago. I am hoping that it doesn't turn into incontinence but only time will tell.

I had 25 days of external beam IMRT + one high dose brachytherapy boost procedure and never had an incontinence problem

@jc76 “ But there is no change to photon going into your body full force, and exiting full force.”

This is not completely true. Though photon beams do travel beyond the tumor striking healthy tissue as they exit the body, they have been attenuated by the tissues in their path and are not at full force when they exit the body.

A lot of information here with many different experiences. I will post mine regarding urinary issues. I completed 6 treatments on the Viewray MRIdian which included the first pre-planning treatment. My treatments were completed in June of this year. I have experienced no incontinence other than some mornings if I don’t go right away I may get a drip or two, so I have learned not to wait too long. I did experience some weaker streams after my third treatment, but that quickly resolved itself in a couple of days, no Flowmax needed after it self resolved. When they did my pre-planning visit they did place a urinary catheter in me so that the MRIdian device and the radiation team could accurately follow my ureter and minimize the radiation it would receive as part of the treatment. The catheter was removed after the pre-planning visit and never needed or used again. Now that I’m a few months past treatments my urinary function is better than before, so maybe my prostate is shrinking in size. Before treatment it was 61cc, unknown now and my psa has dropped from 9.3 to 2.4 Hope this helps

I completed 28 treatments of proton therapy in May and had and no real incontinence. I did have a strange mixture of urgency at times, and difficulty urinating at others, especially at night. About half way through my treatments I was prescribed FlowMax and that cleared up all issues in a pretty short time. I am now 4 months post treatment and still take one FlowMax per day and no urination issues at all. Maybe at some point I'll be able to stop taking them, but a couple weeks ago I forgot one morning and by that evening had a pretty weak stream so I'll continue for now.

@zhit I can only comment on what I was prescribed for my symptoms not the side affects of drugs. Every drug has side affects and what works for one may not work for another.

A person facing surgey, radiation, etc. should know there are a lot of medications that can help as well as changed to lifestyle and exercise you can do to help your symptoms. Talk to your doctors about them and they can determine what is best for you based on their personal medical and mental history.

I was help immensely with symptoms of various issues not just PC radiation side affects. So help is out there just need to discuss with doctors what is best for you personally but just speak out don't think help is not other there both medically and mentally to help you.

@daveinflorida
Hello from a fellow Floridian.
I have read from many posters that the Flomax really helped them. I did not have that medication so cannot comment on it.

I seemed to get more degree of side effects about 2 years after my radiation treatments. My UFHPTI R/O prescribed Cialis to me. I knew nothing about that drug. I thought it was for ED so was puzzled about why I was getting it.

So, I contacted my Mayo PCP and he went over the reason it is prescribed for those who have gone through prostate radiation treatments. He told me is routinely given for prostate side effects as a reduction of inflammation and increased blood flow not just for prosate but bladder and the penis. I then went back to my R/O (I had not taken until talked to my doctors) and was told same thing and very commonly given to men after radiation treatment.

Did it work? Yes, for me. Really lowered my urgency to urinate and cut down drastically the number of trips to toilet. It did not help with dribbling but found doing the Kegel exercises very helpful with that. I had gone through consultation about that at UFHPTI but found the web sites to go to to help to learn how to do them not helpful.

Then the MCC Director gave a web site to how to do them. I can't remember the web site but the moderator (a woman) gave an excellent descripition on how to do them and a really funny description on how it works and feels like, and what it would not affect that I laughed for at least 10 minutes. Was good to have a laugh and wish I remembered the web site but just can say a great recommendation from our Director of MCC.

@dgd1953
I am not sure what you post means. My information comes for direct experience with receiving proton radiaton not photon. The difference between the two were given to me by two consultations. One at Mayo R/Os, and the other at UFHPTI R/O who explain differences to allow me to make a decision for myself and that is what I posted.

Photon radiation can be turned and directed to help not hit organs, etc. but continues out through body. Proton does not exit body and go beyond the programmed stop point.

My post come from my direct experience with two radiation experts who treated me at both UFHTPI and Mayo Jacksonville. When I was at UFHPTI they give you a researched and information packet which explains the differences. UFHPTI made it clear that the success rates were identical but the main difference was proton stops and does not exit through body where photon does.

When I was at UFHPTI half the patients are children. Proton radiation was used to treat them to help prevent secondary radiation damage and secondary radiation cancers caused by radiation.

The next highest people getting radiation proton treatment beyond PC where eye and brain cancer. Again to prevent the radiation from going past that need to be treated and the radiation not continue past into tissues and organs, bones. All my medical provides said same thing ot me major difference is proton stops at specific spot and photon continues through out body. How strong the radiation is as it passes out was not discussed just that the radiaton does continue throughout the body.

Many advancements have been made to photon like SBRT. I was told and steering the beam away from tissues and organs that do not need to be treated. But I based my treatment on my personal experience and my doctors medical advise on proton and photon radiation pros and cons. I picked proton and gave the reasons why I did to a poster who asked me why?

I am not sure about the full force of radiation that comes out after going through other tisues, organs, bones, so cannot comment on that. I do know that recently higher dose radiation treatments with less treatments are now offered. So the amount of radiation going in and out with high dose radiation would determined dosage damage to other tissues, organ, bones, when photon radiation contiues out through body.

I know my UFHPTI R/O did not like higher dose of radiation and lessor treatments as he was seeing more side affects. My PCP (Mayo) said his experience was that he too was seeing increse in side affects with high dose versus low dose. My PCP said many studies have started on the difference in side affects on increased dose versus lower dose treatment plans.

@tj1967 @jc76 Just finished Proton Therapy in 5 sessions on Friday. I chose Proton Therapy because I didn’t want radiation to pass through and affect anything. What I read is that it leads to less of the urinary side effects. I chose the short course also because I didn’t want to spend months in treatment and I couldn’t find my difference in outcomes. The urinary issues might be more intense but theoretically go down relatively quickly. We’ll see. I’m getting up every night many times with urgency. I’m glad I did Proton and I’m glad I did the shorter course because I wanted it over with. @jc76 was on person who I found very helpful in this journey.

@robertov
Agree with you made same decision after a lot discussion with my R/Os and PCP.

When I contacted UFHPTI they sent me a huge information packet with all kinds of information and books on radiation treatments including photon and proton and the research on both. But it was my personal experience with my R/Os and I think the greatest PCP I have ever had that helped me chose.

I get asked a lot if would make same decision. Yes has been my answer. I am happy I chose a type of radiation that was described to me possible helping reduce radiation damage to surronding tissues, organs, bones and that was important to me.

However I would consider doing like you did the shorter higher dose coures. I had 30 rounds of proton radiation which took several months because of holidays. That carried with it (for me) a lot of anxiety and stress. I think the shorter course would reduce that even knowing my PCP and UFHPTI R/O are saying seeing increase in side affects.

But when you think about it would you not expect this with something coming at your prostate with higher damaging radiation dose than coming at you with a lower dose? It just comes down to making a personal choice of what is best for you specifically.