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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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abinoone | @abinoone | 22 hours ago
In reply to @melvinw "@abinoone I have a proactive mindset, so if it was me, I would get a jump..." + (show)
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@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.

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@melvinw very interesting to hear this. I too like to be proactive, but haven't taken any dietary action, yet. I can't imagine that following Sloan Kettering's guidelines would do any harm, but unfortunately they tell me to avoid all of my favorite foods! ☹️

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heavyphil | @heavyphil | 18 hours ago
In reply to @abinoone "@kujhawk1978 very good points, and concerns that I share. I've asked my medical team if we..." + (show)
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@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.

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@abinoone DO THE NODES: 30% failure rate with SRT if nodes are not included.
You treatment gets much more complicated if you can’t control this thing in Round 2.
SE’s from advanced forms of ADT are no picnic!
Phil

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heavyphil | @heavyphil | 18 hours ago
In reply to @abinoone "@melvinw Thank you - this all makes perfect sense to me. I've read the very detailed..." + (show)
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@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?

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@abinoone They really said that?? ‘Let’s see how you do first’?? Hate to say this, but that statement is totally irresponsible; you had better pin these folks down because YOU are the one who is going to pay the freight.
Diet is PARAMOUNT to successful treatment.
Gotta say, I’m seeing all kinds of red flags here. Maybe you should get another opinion before you proceed with this team. JMHO…
Phil

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