What side effects did you experience after salvage radiation?

Posted by abinoone @abinoone, 3 days ago

Late 2022 I was diagnosed with PC (Gleason score 3+4=7), and elected to have surgery. Cancer was confined to one quadrant of the gland, nothing in the margins or lymph nodes. Prospects were highly favorable and my PSA went undetectable for 30 months. Recently, I've had a recurrence, and am planning salvage radiation therapy starting in January. My surgery left me partially incontinent, so I'm concerned about the potential for it to get worse from radiation. I'm also concerned about the possibility of radiation affecting my bowels (I have no such issues now).

I'd be very interested in hearing from others who had surgery followed by salvage radiation, and what side effects you experienced, if any. Were the side effects temporary or have they become chronic? Do you have any advice for someone heading into salvage radiation for the first time? I'd greatly appreciate hearing only from people who have personally experienced this condition.

Thank you in advance!

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My husband had RARP in 2014, no side effects, all good until 2023 when PSA began to rise. Did 33 salvage radiation treatments last year. 6 month retest PSA undetectable, this month came in at .11. Recheck and new scans end of January. His biggest challenge during the radiation was “empty bowel, full bladder”, as someone has mentioned. When we began eating dinner earlier and eliminated some foods (such as salad, sweet potatoes) he did fine. His appointments were at 9:30 am so he also got up around 6 to get all the necessary matters done. He has been lucky with no incontinence or bowel issues. Best of luck to you!

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After my salvage radiation I have bowel urgency. If You feel something, Youd better find toilet.

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Profile picture for restlessandwild @restlessandwild

After my salvage radiation I have bowel urgency. If You feel something, Youd better find toilet.

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@restlessandwild I'm so sorry to hear this - I hope it's manageable. What were your particulars going into the radiation (PSA, PSMA, etc), and do they radiation your lymph nodes as well as your prostate bed?

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Profile picture for aprapr @aprapr

My husband had RARP in 2014, no side effects, all good until 2023 when PSA began to rise. Did 33 salvage radiation treatments last year. 6 month retest PSA undetectable, this month came in at .11. Recheck and new scans end of January. His biggest challenge during the radiation was “empty bowel, full bladder”, as someone has mentioned. When we began eating dinner earlier and eliminated some foods (such as salad, sweet potatoes) he did fine. His appointments were at 9:30 am so he also got up around 6 to get all the necessary matters done. He has been lucky with no incontinence or bowel issues. Best of luck to you!

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@aprapr thank you, and thanks for your tips!

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Profile picture for heavyphil @heavyphil

Hello, My salvage radiation 6 yrs after surgery has left no SE’s as of now, one full year after treatment (with ADT). But that could change in the future; radiation sensitivity varies highly from patient to patient and to date, it is still unpredictable.
But the fact that you are ‘partially incontinent’ from surgery ( stress? Lifting?) ‘could’ make your SE’s more pronounced. But what can you do - not do the SRT?
When I saw the list of all the possible SE’s from SRT, I thought - “OK…or die from metastatic prostate cancer”. Wasn’t much of a decision for me after that.
Phil

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@heavyphil good points!

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Profile picture for abinoone @abinoone

@restlessandwild I'm so sorry to hear this - I hope it's manageable. What were your particulars going into the radiation (PSA, PSMA, etc), and do they radiation your lymph nodes as well as your prostate bed?

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@abinoone My lymph nodes were removed within surgery and radiation was made to prostate bed. My PSA rised to 0.2 after two years of RAPL. PSMA didnt find anything.

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Profile picture for abinoone @abinoone

@abinoone Follow your RO’s advice to the letter: empty rectum/full bladder and you will be fine.
All the RO techs at Sloan reinforced that mantra every single day. One even commented that the only reports she ever got about unfavorable SE’s were related to patients who did not follow the protocol closely enough.
And remember, they will not proceed with the treatment that day if your insides (as measured by a pre-op conebeam CT scan) do not match your simulation profile. Be absolutely sure that your team is going to follow this protocol.
Phil

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I previously posted a detailed summary report on my recent salvage RT experience that includes discussion of SEs: https://connect.mayoclinic.org/discussion/finished-8-weeks-of-imrt-yesterday-summary-report/

I would say that the best approach to mitigating SEs is a proper regime of diet, exercise, and sleep. There is no doubt that it is a stressful process, especially achieving the “full bladder/empty rectum” status that is important for mitigating damage to healthy tissues. I’ve attached a document from the U.S. Veteran’s Administration about nutrition and dietary restrictions during RT. This guide helped me more than any info provided by my radiation oncology team. In 8 weeks of IMRT, I only had an issue with too much gas in my rectum once.

Given that I didn’t want to get sick during treatment, I minimized on social activities. Also, didn’t want to spread disease to folks coming in for treatment that were in rough shape from battling cancer. Avoiding social contact could be tough in the midst of the holiday season, but it is definitely something to keep in mind. I would at least avoid anyone who is ill.

During the five weeks after finishing RT, my energy level has progressively come back to normal. I have, however, been dealing with a lot of skin rashes on various part of my body, including penis, buttocks, feet, and legs. I’ve seen my PCP, urologist and dermatologist about the rashes. No one thinks any of them are a direct result of the radiation, but likely something that is opportunistically flaring up because my immune system is out of whack from the RT. No one thinks they are anything serious, Some rashes have been extremely itchy, others not. The rashes seem to be subsiding but they do keep popping up, just not as severely.

Best wishes for successful treatment. Don’t be shy about expressing issues/concerns to your care team. Be kind to yourself and roll with the ups and downs as best you can. Eight weeks of RT involved a lot of drudgery, but I got through it one day at a time.

Mel

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Radiation Therapy for Prostate Cancer Nutrition Mar 2025_VA (Radiation-Therapy-for-Prostate-Cancer-Nutrition-Mar-2025_VA.pdf)

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Profile picture for heavyphil @heavyphil

@abinoone Follow your RO’s advice to the letter: empty rectum/full bladder and you will be fine.
All the RO techs at Sloan reinforced that mantra every single day. One even commented that the only reports she ever got about unfavorable SE’s were related to patients who did not follow the protocol closely enough.
And remember, they will not proceed with the treatment that day if your insides (as measured by a pre-op conebeam CT scan) do not match your simulation profile. Be absolutely sure that your team is going to follow this protocol.
Phil

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@heavyphil thank you, Phil!

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Profile picture for melvinw @melvinw

I previously posted a detailed summary report on my recent salvage RT experience that includes discussion of SEs: https://connect.mayoclinic.org/discussion/finished-8-weeks-of-imrt-yesterday-summary-report/

I would say that the best approach to mitigating SEs is a proper regime of diet, exercise, and sleep. There is no doubt that it is a stressful process, especially achieving the “full bladder/empty rectum” status that is important for mitigating damage to healthy tissues. I’ve attached a document from the U.S. Veteran’s Administration about nutrition and dietary restrictions during RT. This guide helped me more than any info provided by my radiation oncology team. In 8 weeks of IMRT, I only had an issue with too much gas in my rectum once.

Given that I didn’t want to get sick during treatment, I minimized on social activities. Also, didn’t want to spread disease to folks coming in for treatment that were in rough shape from battling cancer. Avoiding social contact could be tough in the midst of the holiday season, but it is definitely something to keep in mind. I would at least avoid anyone who is ill.

During the five weeks after finishing RT, my energy level has progressively come back to normal. I have, however, been dealing with a lot of skin rashes on various part of my body, including penis, buttocks, feet, and legs. I’ve seen my PCP, urologist and dermatologist about the rashes. No one thinks any of them are a direct result of the radiation, but likely something that is opportunistically flaring up because my immune system is out of whack from the RT. No one thinks they are anything serious, Some rashes have been extremely itchy, others not. The rashes seem to be subsiding but they do keep popping up, just not as severely.

Best wishes for successful treatment. Don’t be shy about expressing issues/concerns to your care team. Be kind to yourself and roll with the ups and downs as best you can. Eight weeks of RT involved a lot of drudgery, but I got through it one day at a time.

Mel

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@melvinw thank you ever so much Mel! Your suggestions are especially helpful.

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