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Ongoing constant pain post Proton radiation

ProtonPain
Posts: 5
Joined: Mar 2020

I have a similar problem, but its ongoing.  I was diagnosed in 2008. Did watchful waiting until 2014 when I opted for Proton treatment at MD Anderson.  It all went well until about 3-4 weeks after finishing treatment. The the pain and "other" problems started. I have very strong pain during urination. It was like having a bad UTI 24/7, 365. They did a couple of cystoscopys over the next two years that showed damage to the bladder wall. During a treatment follow up colonoscopy they had to do a little "spot welding" to a place in the rectum. Don't know if they are related but those "other" problems I mentioned, were problems with rectum and sphincter control. I had several embarrassing experiences where I didn't make it to the toilet in time. For two years I always had to know where the toilets were and could I get there fast enough. I would go into the sexual issues, just just suffice to say, that part of life is over. The Docs couldn't seem to provide a solution, and seem to infer "Gee, we've not seen this problem before."


I finally went to another urologist and he did another cystoscopy. He used the word "change" instead of damage. He suggested I try Hyperbaric therapy. So in the spring of 2017 I did 8 weeks and shortly after I had relief. No more embarrassing accidents. No more pain that would wake me up to pee 5 times a night. BUT it only lasted about a year. 


The urinary pain has returned in 2018. And its the same again.  I have the pee urge and have to go about every hour. I have to get up 3-5 times every night. The pain is constant, always there, though sometimes on a 1 on a10 scale. But at night sometimes it hits an 8-9 and it takes me 20-30 minutes to pee.  I tried Hyperbaric again last Fall, and this time it had no positive result, and be advised that stuff is expensive. You need real good insurance. The urologist just did another cystoscopy a few weeks ago and it seems like the "change" is worse than I recall from his first one in 2017.  He has me trying acupuncture treament now. Its used apparently for OAB therapy. He also had me try tamsulosin, but it didn't help.  The pain actually seems to be getting a bit worse over time, not better.


So five years after proton treatments, life is kind of lousy. The constant loss of sleep has had an impact on my memory, as well as being tired a lot.  I'm reaching out here because I don't want to spend the rest of my life with this misery. Hopefully soon someone will provide a solution.

Flyer83948
Posts: 27
Joined: May 2019

Sorry to hear about the problems that you're having, and it's too bad that the hyperbaric treatment didn't work the 2nd time. Was waiting and looking to see if anyone had chimed in yet with any suggestions for you since there seem to be a lot of discussions about X-ray radiation treatments here. Or maybe the side effects and possible complications of proton radiation treatments are different from those of X-ray radiation treatments?

ProtonPain
Posts: 5
Joined: Mar 2020

Thanks for the reply.  Yes I'm trying to reachout and search for others in a similar situation. The constant pain wears you down. And it is really annoying when it takes 5 minutes or more just to starting peeing. FOr some reason longer at night.

 

Ralphie62
Posts: 56
Joined: Feb 2010

So, I opted for proton therapy at UF Shands hospital in Jacksonville, FL. It was my first line of treatment in the spring/summer of 2010. I had absolutley no negative side effects. My wife anad i had/have a very active sex life> I had absolutely no negative side effects, except for being more tired at the end of the treatment. I did the 6 week treatment regime. we feel like it was the very best treatment availabel. There were many men there that had surgery, robotic and other treatment and they all had incontinenece and impotence issues. I am so blessed to be part of "the BOB" men.

The brotherhood of the balloon is a website that has men who have had proton and their experiences>>I also read the book "you can beat prostate cancer" which was very helpful to me. Good luck!

Gforce
Posts: 21
Joined: Jan 2020

I have just finished Proton. In the early weeks I had pressure and burning. I was given Flowmax and all went away. 

ProtonPain
Posts: 5
Joined: Mar 2020

Regarding BOB, it seemed to me they didn't have much on "negative" effects.  My problems didn't start immediately after proton treatments ended. It took about 3-4 weeks.

I tried FLowmax and at least two other things and they did nothing. I'm trying Lyrica now, and it seems to be having some fair results. Pain seems to be somewhat dimished. It really help me sleeep at night, though i still get up an average of 2 times a night. And when I try to pee it doesn't hurt as bad as in the past. But it still takes a while to get the pee started and I don't always seem to get it all emptied.

I didn't mention in my initial post, but the impact on sex is pretty bad as well. Can't get a good erection when I want to; only about 60% hard, and it goes away pretty easily. Ejaculation is next to none.  I have occassionally had a good 100% erection, but usually at night when I am just waking up I'll notice it. Of course it goes aways fairly soon. But this wek I had a special surprise. I had one in the middle of the day, but I was just waking up from a nap. So I don't know what sleep has to do with it, and none of the docotors can offer anything (of course).

Clevelandguy
Posts: 552
Joined: Jun 2015

Hi Proton,

I noticed after my sugery when I was healing that the first good solid erections were waking up in the morning.  I still have them from time to time so maybe its a good sign, could mean your starting to heal up in that department. In my humble opinion if you get a good solid erection that means all the equipment is working, but I think a lot of my lack of firmness early on was nervousness and being able to "perform" at the right time.  Probably way too much information for ya................

Dave 3+4

 

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