1. < Prostate Cancer

How to Minimize Side Effects of Treatment?

Posted by bdc1677 @bdc1677, Aug 1 10:29am

I was recently diagnosed with prostate cancer at 57. Gleason score of 7 (3+4), PSA of 6.35 (almost doubled in 2 years). I've been diligent about following my PSA due to strong family history. My hope was if I caught it early I would have fewer side effects from whatever treatment I selected. I am now finding out that may not necessarily be the case.

I've read strong arguments for both surgery and for radiation. Research shows the regret rate for surgery at 20%. Which seems high to me.

How long have you had to deal with side effects for the procedure you selected?

Thanks!

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milburnd | @milburnd | Aug 3 6:58am

Here are some things to consider:

1) Request a decipher test on the tissue from your biopsy. This is a step beyond the Gleason score and helps determine how aggressive your cancer is.

2) Give thought to getting a second opinion from a Cancer Center of Excellence. Here's a link:
https://www.cancer.gov/research/infrastructure/cancer-centers/find
3) If your tumor(s) are contained within the prostate, focal treatment is something to consider. These treatments use a variety of ways to kill the tumor(s) without removal or radiation. Look up things like HIFU, cryotherapy, Irreversible Electroporation (IRE), and others.
https://www.medicalnewstoday.com/articles/focal-therapy-for-prostate-cancer
My PSA score that got the urologist's attention was 4.25. A follow-up MRI indicated two tumors, both contained within the prostate. My biopsy showed a Gleason score of 3+4=7 (intermediate risk) and my decipher results indicated low risk, making me a candidate for active surveillance or focal therapy. I chose focal treatment because one of the tumors was abutting the edge of the prostate. I had the IRE treatment in January 2024. After the treatment, I had some relatively mild incontinence which has mostly cleared up. I also had some blood in my urine for about six weeks after the treatment, but that has totally cleared up. My sexual function is unchanged from before the treatment. My PSA in April was down to 1.53. I'm scheduled for a follow-up MRI in August to see how well the treatment worked. My doctor said that if there is an indication that the IRE was not totally effective, I can consider an addition IRE treatment, removal or radiation.
Focal treatment is definitely not for everyone, but with the proper set of circumstances, it would be an alternative worth considering.

Best wishes for a great outcome for whatever treatment you decide upon.

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scottbeammeup | @scottbeammeup | Aug 3 7:10am
In reply to @bens1 "I had Gleason 3+4 as well with a PSA of 10.2. I had no ADT treatment..." + (show)
@bens1

I had Gleason 3+4 as well with a PSA of 10.2. I had no ADT treatment but did have a tight margin, Radiation machine called the Mridian.

After the third dose of the five hypo fractional treatments that I was supposed to have, my urine flow was restricted and they gave me Flomax, which worked overnight. I did have spaceoar put in.

I believe because I had those tight margins for radiation (2 mm vs 3-5 for most other forms of radiation) that the amount of exposure to radiation of my healthy tissue was minimized as were my side effects. I finished treatment in February 2023.

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Had the same problem with urine flow and also was put on Flomax, which works well. I find it also helps me be able to go hiking with my dog for two hours without having to pee in the woods.

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klekabe | @klekabe | Aug 4 3:56am

I have had thirty days of radiation with no side effects.Prior to this I also had bratty therapy which was not successful.It is only now two weeks post radiation that I am bleeding with burning sensations, hot flushes which precipitate excruciating pain of the head of the penis and proctitis. I also suffer from incontinence as a result of which I had to cathertatise a day ago. How long do these side effects take.

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bkizer | @bkizer | Oct 22 12:18am
In reply to @retireditguy "I'm 70 and reasonably fit (but not excessively so) at 5'11" and 187 lbs, and I..." + (show)
@retireditguy

I'm 70 and reasonably fit (but not excessively so) at 5'11" and 187 lbs, and I had NS RALP (at a cancer center of excellence by an excellent doctor) 5 weeks ago. My recovery after surgery has been good. I never had any incontinence but I still wore a depends for 1 day, then switched to pads for about 4 days, and then I simply went back to normal underwear. I also have a large pad on my side of the bed under the sheet, just in case. Even though I never was incontinent after the catheter came out (except for a couple accidents as I figured out a few things), things do "feel a bit different". For example, with my prostate gone, I urinate like I'm 30 years younger. So when I step up to a urinal, I need to be ready when I "relax" as it starts to flow instantly. No pause like when my old prostate needed to relax before flow started. That's the kind of thing I mean about things "feeling a bit different". It took me a month to gain confidence that I wouldn't have an accident. I did do Kegels for about a month before surgery and resumed them after the catheter came out, so that may have helped my recovery. So at this point 5 weeks after surgery I'm generally "back to normal" for continence. Hopefully it'll stay that way, but who knows. Now to ED. Before surgery I needed Viagra for intercourse, so I wasn't starting from a pristine state. Right now I don't have normal sexual function, and I think that'll take longer to recover (if it does). I am taking Viagra nightly as part of penile rehab to help blood flow. I've only started trying to have intercourse within the last week or so. When I try to have intercourse, I do get a response but it's far from satisfactory. I think I've already seen improvement, but maybe it's my imagination. It's too early to know how much sexual function I'll ultimately recover. As far as everything else, I generally feel great; just like before surgery. My wife and I are hikers and spend a lot of time together, and other than sex, we can still enjoy ALL our other activities. Plus if the ED persists, there's a range of treatments I've yet to explore. So, bottom line for me: at this early time in this unfortunate journey, I have no regrets with my decision. But time will tell.

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Sounds good for you. I had seed implant and radiation treatment 13yrs ago. I'm 77yrs and really having problems with ED. My wife passed 2yrs ago and was fortunate enough to have found a new love but the ED is effecting me in the worst way. I'm on trimix that worked for the first 4yrs but with my wife's health issues and going down Hill we quit having sex. Now that she's gone I thought I could start the Trimix but it isn't working. I hope my Dr. has something up his sleeve that will work
I'm not ready to give up sex. I'm glad to be cancer free.

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1 reply
bkizer | @bkizer | Oct 22 6:00am
In reply to @bkizer "Sounds good for you. I had seed implant and radiation treatment 13yrs ago. I'm 77yrs and..." + (show)
@bkizer

Sounds good for you. I had seed implant and radiation treatment 13yrs ago. I'm 77yrs and really having problems with ED. My wife passed 2yrs ago and was fortunate enough to have found a new love but the ED is effecting me in the worst way. I'm on trimix that worked for the first 4yrs but with my wife's health issues and going down Hill we quit having sex. Now that she's gone I thought I could start the Trimix but it isn't working. I hope my Dr. has something up his sleeve that will work
I'm not ready to give up sex. I'm glad to be cancer free.

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Thank you for the hug jc I hope you have a great day.

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1 reply
jc76 | @jc76 | Oct 22 6:22am
In reply to @bkizer "Thank you for the hug jc I hope you have a great day." + (show)
@bkizer

Thank you for the hug jc I hope you have a great day.

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Double hug!!! You brought a smile to my face this morning reading your post. Boy those smiles feel good. I am starting my day with a smile. I hope you have a great day also!!.

My wife and I sex life went way down many years ago. She deveoped into a diabetic 1 and can't control it. I had a ICD/Pacemaker put in many years ago and really affected being able to be close. They put it in below my chesk muscle. We cannot lay together like we used to. Can't put any weight on the pacemaker without pain. I really miss those days she would lay her head on my chest.

Now she has diabetic sensors on her arms, and devices, needles, tubing, that are connected to her stomach so she can get insulin from an automatic pump. So we try to find other ways to feel close and intimate these days.

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