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BCR after 5 years Prostatectomy now questions about SRT

Posted by rjnoonan @rjnoonan, Apr 8 10:20am

This forum has been very helpful. I just discovered I have BCR after 5 years no levels of PSA tests. Had the Prostatectomy with little or no side affects little over 5 years ago. Now PSA is at .45 after being undetectable for 5 years. PSMA/PET showed nothing of concern. CT scan came back clean. Decipher test shows .61 as higher risk. Contacted Mayo and they said I did not qualify for Proton treatment. Therefore looking at local radiation therapy. I am 62 years old and fairly healthy other than PSA. My question to the group is how radiation affected ED and Bladder control. From what I read on this board, ADT is not fun. Looking for any advice and experiences from Radiation therapy after prostatectomy. So very grateful to have found this location for others in my position.

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jeffMar | @jeffmarc | Apr 8 11:06am

12 years ago I had salvage radiation, 3 1/2 years after a prostatectomy. The prostatectomy left me with ED so the radiation didn’t make any difference. I had seven weeks of salvage radiation and after about five years I started having problems with incontinence, It has been treated by a drug that works quite well. I had no other side effects from the salvage radiation, Some people do have fatigue and urinary tract issues during radiation, but not most people. Savage radiation usually does not damage ED if you already are able to get an erection. It may affect it after a few years, however.

At a recent conference, doctors were talking about the fact that Salvage radiation only works real well in about 1/3 of patients. Dr Scholz Recommended that people wait until Metastasis show up, And then zap them with SBRT. He has found that has worked well, and many patients have had long-term remissions after that. For me, the salvage radiation lasted about 2 1/2 years before my PSA started rising again. You can listen to the doctors talk about salvage radiation by going to YouTube and listening to the latest PCRI conference, The last hour and a half this is discussed so you could skip the First five hours or so.

I’ve was on ADT for 8 years. Yes, it’s no fun, but it works, Even when you become castrate resistant, it works a little. The thing with ADT is, you must get a lot of exercise in order to manage the side effects. Walking every day and doing exercise with weights a few days a week makes a big difference in your overall health.

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1 reply
rjnoonan | @rjnoonan | Apr 8 4:23pm
In reply to @jeffmarc "12 years ago I had salvage radiation, 3 1/2 years after a prostatectomy. The prostatectomy left..." + (show)
@jeffmarc

12 years ago I had salvage radiation, 3 1/2 years after a prostatectomy. The prostatectomy left me with ED so the radiation didn’t make any difference. I had seven weeks of salvage radiation and after about five years I started having problems with incontinence, It has been treated by a drug that works quite well. I had no other side effects from the salvage radiation, Some people do have fatigue and urinary tract issues during radiation, but not most people. Savage radiation usually does not damage ED if you already are able to get an erection. It may affect it after a few years, however.

At a recent conference, doctors were talking about the fact that Salvage radiation only works real well in about 1/3 of patients. Dr Scholz Recommended that people wait until Metastasis show up, And then zap them with SBRT. He has found that has worked well, and many patients have had long-term remissions after that. For me, the salvage radiation lasted about 2 1/2 years before my PSA started rising again. You can listen to the doctors talk about salvage radiation by going to YouTube and listening to the latest PCRI conference, The last hour and a half this is discussed so you could skip the First five hours or so.

I’ve was on ADT for 8 years. Yes, it’s no fun, but it works, Even when you become castrate resistant, it works a little. The thing with ADT is, you must get a lot of exercise in order to manage the side effects. Walking every day and doing exercise with weights a few days a week makes a big difference in your overall health.

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Thank you so much. A great deal of information out there and hard to decide what is reliable or not. Appreciated!

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edo | @edo | Apr 9 6:42am

Sorry you have to go through salvage radiation, but it is likely necessary. Based on my experience (salvage radiation beginning 11 months after RP due to a PSA of 0.5), you may anticipate side effects to your bowel, bladder and sexual function. In my case, Imodium and high fiber helped with my bowels. Although I was told bowel problems would cease about a month after radiation they persisted for about 10 months. Increased urination especially at night which I attributed to ADT, resolved itself once the ADT left my system. Leakage still persists but is not a significant issue except in the bedroom. More on that later. Assuming you’ll be on some form of ADT, expect a low or nonexistent libido. That should improve a few months after the ADT ends. Urinary leakage during sexual arousal remains a problem for me. I have started using a condom for intercourse, and that helps insure I will not dribble in my partner. For me, the side effects of salvage radiation were much worse than advertised. However, given that I have been cancer free for more than a year now, salvage radiation was definitely worthwhile.

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1 reply
heavyphil | @heavyphil | Apr 9 8:12am

Hi rj, If you’ve been following this forum, the phrase most often repeated (ad nauseum because it’s TRUE!) is “everyone is different”.
You may experience every single side effect from both ADT and radiation to greater or lesser degrees; or just some of them….or none! It’s just the way it is.
I had some SE’s from Orgovyx but none so bad that they ruined my life. Similarly, radiation was pretty easy and I found the everyday bowel requirements the most challenging aspect.
So plan for the worst, hope for the best and you’ll probably wind up somewhere in the middle. Best,
Phil

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Moderator
Colleen Young, Connect Director | @colleenyoung | 5 days ago

@rjnoonan, you're asking good questions. If you go to the Prostate Cancer group's main page here https://connect.mayoclinic.org/group/prostate-cancer, you can use the search function to find discussion related to your questions.

For example:
Biochemical recurrence (BCR) https://connect.mayoclinic.org/group/prostate-cancer/?search=BCR&index=discussions
Urinary https://connect.mayoclinic.org/group/prostate-cancer/?search=Urinary%20&index=discussions

Have you discussed more with your team about what type of radiation and how many sessions? When do you start?

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rjnoonan | @rjnoonan | 5 days ago
In reply to @edo "Sorry you have to go through salvage radiation, but it is likely necessary. Based on my..." + (show)
@edo

Sorry you have to go through salvage radiation, but it is likely necessary. Based on my experience (salvage radiation beginning 11 months after RP due to a PSA of 0.5), you may anticipate side effects to your bowel, bladder and sexual function. In my case, Imodium and high fiber helped with my bowels. Although I was told bowel problems would cease about a month after radiation they persisted for about 10 months. Increased urination especially at night which I attributed to ADT, resolved itself once the ADT left my system. Leakage still persists but is not a significant issue except in the bedroom. More on that later. Assuming you’ll be on some form of ADT, expect a low or nonexistent libido. That should improve a few months after the ADT ends. Urinary leakage during sexual arousal remains a problem for me. I have started using a condom for intercourse, and that helps insure I will not dribble in my partner. For me, the side effects of salvage radiation were much worse than advertised. However, given that I have been cancer free for more than a year now, salvage radiation was definitely worthwhile.

Jump to this post

Thanks so much for the feedback. This forum is assisting me with several issues. I wish I would have found this five years ago. I have found the Prostate Cancer Research Institute Youtube videos very informative. Hope to update the forum in 8-10 weeks with good results.

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kujhawk1978 | @kujhawk1978 | 4 days ago

Well, if you have the inclination, you can read through this - https://www.urotoday.com/conference-highlights/eau-2025/eau-2025-prostate-cancer/159158-eau-2025-how-to-optimize-outcomes-in-men-with-biochemical-recurrence-after-local-treatment-with-curative-intent.html?utm_source=newsletter_14096&utm_medium=email&utm_campaign=prostate-cancer-daily

If you're not more confused about your treatment choices after finishings the article, welcome to the club - SRT only, which machine, add ADT, how long, include the pelvic lymph nodes, if ADT, which agent..., if I do nothing, how long..

Your clinical history would help members of this forum in their thoughts - pathology report - GS, Margins, SV and ECE... from surgery, any PSA tests which would indicate velocity and doubling...

Next, my experience with SRT in March 2016, zero side effects - no ED, Bladder issues.... Nor have I had any side effects from whole pelvic lymph node radiation or SBRT (see attached chart, clinical history). Why, who knows, the software used for planning and the equipment used for delivery are pretty sophisticated. I have used the same radiologist, she's good, so is her team.

As to the ADT side effects, they are well known. How can you mitigate them, diet, exercise, managing stress. Recovery from ADT treatment can be a function of time on ADT, 6, 12, 18 , 24 months, or longer. My recovery from both 18 and 12 months of ADT has been rapid, within the first three months.

As others have said, this is a cancer which is not alike for each of us. There is the scientific guidelines which are valid science but population based and historical given the rate of medical research. Then there is the distribution of our experience with side effects and statistics, Bell Curves, Means, Modes, Averages, Standard Deviations.

At age 62, you likely have a 15-20 life expectancy assuming no co-morbidities. With that PSA, likely something is going on, question is what, what to do, with what, when?

You can choose to treat conservatively, say SRT to the prostate bed only, be more aggressive and include the WPLNs, even more aggressive, add short term ADT, say six months, Orgovyx though.

Discuss with your medical team,

Kevin
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dpfbanks | @dpfbanks | 4 days ago

Just a question for you - would you be radiating the prostate bed or pelvis/lymph even though nothing is showing up? Have you been on ADT at all? Just curious as I, too, and learning.

Salvage R was suggested to us (BCR 17 yrs post prostatectomy), but we chose the PSMA PET and nodules did show up outside the pelvis only, so we are glad we did not radiate.

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