Mild pain and constant peeing six months after radiation

I'm almost one year out of ☢️ and have no pain, but about 1.5x nocturia.

@scottbeammeup (I think this is a star wars connection)
Your R/O and urologist should have been talking to you about side affects from radiation. You had SBRT which I believe is photon radiation. It is different than proton as the radiation continues to go out through your body and does not stop at prostate and margins set like proton does.

YES, YES, riding a bike (regardless of padding) should have been told to you will cause irritation to your prostate. I was told to stop riding my bike 2 weeks prior to radiation, no riding during, and refrain from riding it for 1 month after. I wear padded shorts but the weight and seat will irriate your prostate. Were you not told about the direct connection to higher PSA numbers a possibility of bike riding. I had to stop bike riding prior to my PSA test to make sure that was not the cause of my rising PSA numbers (it was cancer though).

When you have radiation your prostate has gone through a war. It is trying to heal and recover but radiation has made in extremely irritated. When you add anymore irritation to it you are going to feel it and going to have additional side affects. Irritated your prostate after the radiation war is just going to make is worse and slow the healing process.

I am really wondering where you had your treatments done. All of your questions should have been gone over with your prior to your treatments of what to expect and what to do to minimize them prior, during and after.

Everyone is different and will react different to the radiation treatments. Some have none, some minor and some really bad. If you read MCC you will see that most have an increase in need to urinate and changes in velocity etc. So you are experiencing what most do. Yes it does improve (for most) over time but stay away from anything that will irritate your prostate (no biking).

I was about 3 weeks into my radiation (had proton) when the urge to urinate went up and the ability to hold it without leaking started. At UFHPTI we had to drink a certain amount of water prior to radiation. That meant after radiation treatment I better go to bathroom regardless of feeling the need to as the drive home it would come on with great urgency. I also urinated about every 2 hours including getting up at night.

About 4 weeks after radiation ended my urge to urinate and velocity of stream started to improve. Now over a year since radiation is back to the way it was. That does not mean I don't get up several times a night but that was the norm for me. I drink to much liquid prior to going to bed.

Again when I read posts like this about side affects and questions on biking I really feel bad for the individual as these side affects should have been discussed with you especially the bike riding and the increase in need to urinate.

I have never had to get up for more than a couple of times in the night, but for a while did have the urge to go, at night, when I knew I didn’t need to.

I asked my neurologist to let me take a pill called Gemtesa which is supposed to stop urgency and also reduce incontinence. He couldn’t prescribe that one and instead gave me a prescription to Myrbetriq. That did exactly the same thing, I don’t get up more than once a night now, don’t wake with the thought that I need to go, and incontinence is reduced a lot.

My brother had SBRT For his prostate cancer, but it didn’t cause the problems you describe. After hearing from many people that have had that radiation your symptoms are not normal.

Radiation proctitis and radiation cystitis can be side-effects of SBRT. Often they don't show up at all; sometimes they emerge shortly after therapy, and sometimes they show up years later; sometimes they go away quickly on their own, and sometimes they don't. They can both be confirmed with imaging (a routine colonoscopy can see the proctitis, while a cystoscopy can see the cystitis: they both show up as angry, inflamed areas on the monitor).

There are treatments if it becomes unbearable, but if you can live with it without too much discomfort, I suggest letting it be and crossing your fingers that it just goes away. I, unfortunately, seem to have both for the long haul, but they don't bother me that often, so I haven't asked for anything like hyperbariatric treatment (pumping my bladder full of pure oxygen every day for weeks to promote healing); instead, I just go easy on the caffeine and stay hydrated. If I have a spicy meal, I know in advance that I'm going to be feeling it in both areas. I've seen specialists for both (proctologist and urological oncologist), and they've confirmed that it's not "cancer-involved", just another little thing to deal with.

Thanks. Interesting about the spicy meal thing. I LOVE spicy food up to and including haberneros and put jalapeños on just about everything: salads, burgers, etc. Maybe will try dialing it back a notch and see what happens.

It's not painful just slightly uncomfortable but I'm also wondering if it could still be remants of the SpaceOAR gel, though that was six months ago.

Thanks will ask about this.

I was told no biking during or for one month after radiation so I followed that advice. I was told that riding a bike can raise PSA but the amount is negligible (.1 to .3). I took Flomax for two months after radiation and it helped but frequency is getting ridiculous. I tried stopping all liquids at noon, 10 hours before bedtime, but that hasn't really helped.

I did go to a major cancer Top 10 cancer center but your point about SE's is valid. There were A LOT of side effects I wasn't told about to the point that I talked to their ombudsman about this since I feel they need to be more forthcoming.

I'm just four months out so will give it some time and see what happens.

Flomax did nothing for me, but Myrbetriq reduced my urgency in a couple of weeks once we got the right dose, especially at night. Instead of easing flow (which was never my problem), Myrbetriq relaxes the involuntary detrusor muscle that squeezes the bladder. I had to go to double the starting dose, though, before it started working, and also scaled back on spicy food, caffeine, alcohol, and carbonated beverages for a while.

Not drinking for 10 hours before bed might actually make things worse if the urgency is coming from irritation in your urinary tract. Water flushes everything out: if you let your urinary tract dry out, it increases the irritation, and might even end up as a full UTI, as happened to me. For me, the trick was to drink a lot of water during the day, but then stop after dinner (except what I needed to swallow pills).

@scottbeammeup
Did you have the low dose radiation around 30-40 sessions or high dose around 10? What research (My Mayo PCP passed on to me) is showing that high dose is showing more significant side effects than low dose.

Being a long distance bike rider (I do 25 mile route) I know the bike riding can really irritate the prostate. What I did for many months after radiation ended was to move to my hybrid bike which has a wide seat designed for comfort. My usually training bike (I do Sprint Triathlons) has the skinny seat and I am bent over position. The wide seat and upright ride position reduceed the pressure on my prostate and really helped.

The pressure of a skinning seat on a irritated prostate can possible be the cause of your pain but something you should talk to your urologist about.

Even though I was given a pamphlet, had a PA nurse that went over all side affects, and then my R/O doing the same they left off one thing. Dry orgasms. So when it happened to me I did not know was a common side affect as the radiation affects the seminal vessels. That is where MCC is so valuable as I learned this does happen.

I was reading somewhere (wish I could remember) that it was talking about radiation irritating and/or damaging the bladder. The information said can also be the cause of increased frequency and irritation because of the damage and irritation that can occur to bladder. This is something you can asked your urologist about but I did read it can also be a cause of your continuing problem with frequency of urination.

When did your radiation end?