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Post Proton Therapy penis pain

JohnDudley
Posts: 2
Joined: Mar 2008

I chose Proton Therapy at UF PTI in Jacksonville, FL for early stage prostate cancer. Started in Jan. 2008 and ended Mar 6, 2008. In late Feb. I developed a burning sensation in the penis. I could not say if it was internal or external, but I was also super-sensitive to the touch of my underwear or bedsheets. At home I would wear only a shirt. My DR at UFPTI was stumped, having never had a patient with my symptoms. They started in 2006 I think. I suffered for over a month without relief. My GP gave me a jock itch ointment ha ha. I had a urinalysis and bloodwork at end of treatment. My PSA wa down from 4 to 2.8 I was given no meds other than Flomax and Peridium. I still take Flomax. The sensitivity kept me from being able to lie in bed without pain and I tried to sleep in a recliner with my knees drawn up to hold the sheet away from my penis. I got very little sleep, and no deep sleep. I was getting depressed and thought I could not go on this way. I went to a pain specialist. He immediately diagnosed me with damage to a nerve bundle that extends from the area of the prostate into the penis. He prescribed Lyrica 75mg every 12 hrs to build up to 200mg over time. I got 10 hours deep sleep the first night on this. I still have a dull pain at times but the sensitivity is gone and I have no burning like before. The pain Dr. had worked in Houston previously and had seen others with my symptoms who had been through proton therapy there. He thinks the pain will abate over time and I was relieved to find others on this site who have had similar pain which went away eventually. I just wanted to share my experience and hope anyione who has similar symptoms will add to this discussion.

nodawgs's picture
nodawgs
Posts: 118
Joined: Mar 2001

I'm a little surprised at this, I guess because I was of the mis-led thinking that proton beam therapy would rise to the top as the most effective curative procedure with the least, if any, side-effects. Unlike IMRT rads, it leaves no exit wound, but does have an entry wound. I've heard of identical symptoms in patients, regardless of how the cavernous nerve bundle got damaged. As an example, these same, excrutiating symptoms are not uncommon with post-surgery cryoablation, aka cryosurgery. Though nerve tissue is the slowest growing, slowest to repair tissue in the human body, in these particular instances, it seems to gradually subside within 6-months or so.

Also, after going through all this, I'd be extremely concerned about a PSA assay of 2.8, rather than something much, much lower.

This is not the outcome patients are led to believe will be the case. I can relate to your every word...been there, done that, though a different procedure. I wish you the best.

Nodawgs

nodawgs's picture
nodawgs
Posts: 118
Joined: Mar 2001

Whups!...forgot!

Yes, regardless of which procedure damaged the nerve bundle, all post-op, pain-related instances I've read about finally did go away. In my case, it was a gradual process, but was completely gone in about about 6-months. You are so correct...it's a horrific existence until it does go away!

I hate to reiterate, but this has certainly popped my balloon about proton beam therapy, specifically as to the level of potential damage to the cavernous nerve bundle; damage I was under the false impression could be completely avoided.

Thanks!...I've learned something I can pass on. I have two sons whose susceptibility to this wretched disease is also high...as was mine.

ProtonPain
Posts: 4
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 treament at MD Anderson.  It all went well until about 3-4 weeks after finishing treament. 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 contol. 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.  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 time 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.  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 treaments, 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.

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