What side effects did you experience after salvage radiation?

I completed salvage radiation (39 days over 8 weeks) close to two years ago. As others have said, prep and diet are key. I got through the treatments just fine, but a little over a year later developed radiation proctitis, which has not been fun—urgency, mucus, bleeding, and wet flatulence. Fortunately, a nightly suppository, mesalamine, has addressed the inflammation. The suppository has its own challenges, but it’s better than the alternative. My blood counts went down during radiation, and they never fully recovered. That could have been caused by the radiation, but ADT (lupron, abiraterone, prednisone) might have also been the cause. My immune response is still healthy, however, so my docs aren’t worried.

Rectal bleeding, bowel incontinence currently 10 months later, urinary incontinence. The gift that keeps on giving.

I had SRT in March 2016 after BCR (see attached clinical history).

It was 39 IMRT, 70.3 Gya.

Side effects, none.

Why, testimony to my radiologist and her team?

Hardest part?

Timing of full bladder.

As others have said, ensure rectum is empty.

Something to discuss with your medical team is whether to extend the radiation treatment to the pelvic lymph node system and add short term systemic therapy, six months up to say 12-18.

Since it was less than three years and the GS 3+4 may place you at the edge of moderate risk, that discussion should center around how aggressive you want to be.

Imaging can only show so much. Micro metastatic disease may be there in the lymph nodes.

There is some discussion about SRT as being a "curative" intent.

There is also discussion that once PCa is no longer local that it is advanced, not curable but manageable.

Like I said, a discussion between you and your medical team. If not "curable" then the conversation my shift to outcomes such as progression free and radiographic free "survival."

Just a thought.

Kevin

@kujhawk1978 very good points, and concerns that I share. I've asked my medical team if we should include the pelvic lymph nodes as part of my treatment but haven't been able to get a clear answer other than that doing so would increase the potential side effects.

@chippydoo oh, I'm so very sorry that you're suffering from these side effects! ☹️ If you don't mind my asking, what was the nature of your cancer before radiation, and were your pelvic lymph nodes included with your treatment?

Take care,
Clark

@melvinw Thank you - this all makes perfect sense to me. I've read the very detailed do's and don'ts published by Sloan-Kettering, with special attention to their dietary recommendations. I asked my radiation oncology team about this and was told "don't bother, let's see how you do first". This makes me a little apprehensive - I'd like to do everything possible to minimize the risk of damage to my urinary and gastrointestinal tracts. What are your thoughts?

@abinoone RP two years prior to BCA. PSA never went below .03. Year 2 started at .04, 6 months later .08 and at 2 years .22. PSMA Pet clear. 25 sessions of EBRT of the prostate bed with 6 months ADT. 3 months Lupron which drove me anemic so switched to Orgovyx and blood recovered to normal after 3 months. 2 months later PSA undetectable and T 230.

@abinoone

They are not wrong, that's the downside....

The upside is the outcome could be a longer progression free survival period, aka, vacation.

I say that because when I did SRT, my medical team stated SRT to the prostate bed. When I raised the issue of data from clinical trials showing that in high risk individuals, more often than not the BCR was already in the lymph nodes and the best treatment in terms of management was radiation to the prostate bed, entire pelvic lymph node system and short term systemic therapy, six months ADT.

They're reasoning, no long term data supporting it...

I acquiesced....

I will never forget my radiologist hesitating before turning to me 90 days after the 1st PSA test and saying my PSA had more than doubled from .3 to .7, the SRT had failed.
I

@abinoone I have a proactive mindset, so if it was me, I would get a jump start on the dietary adjustments. In my case, cutting out beans, a dietary staple for me, pretty much did the trick. I also added extra protein to my diet before starting RT and continued throughout and after for a couple of weeks.

When I had the problem with too much gas in my rectum on the second day of treatment, I asked my RO why I wasn’t provided better upfront info about that. Her response was that she didn’t like to overwhelm patients with too much information and preferred to address issues as they popped up. That approach really doesn’t work for me, and honestly, just makes me distrustful and even more anxious. I found the nurses to be much more upfront about things like this.

I will just say this—I tried to be proactive about mitigating SEs during treatment, and as it turned out, my SEs were relatively minor. Can’t prove a causal connection, but there is a correlation.

@kujhawk1978 oh that's really distressing. My radiation oncologist is highly qualified and experienced, but a bit of an arrogant prick. It's been hard to get him to take the time to talk me through the pros and cons of including the pelvic lymph nodes.