Anyone had salvage radiation therapy post-prostatectomy?

@melvinw Standard IMRT, but 25 tx at a bit higher power + 6 mos ADT.
Happily, I had no digital exam before treatment by my current RO…the previous one ( who left Sloan, thank goodness) really killed me with his finger and I almost elbowed him in the nose.

Hey HeavyPhil & MelvinW,
What's with the DRE when your prostate is gone? Is this something that I should either expect, demand or dread?
I'm 14 months post-prostate (11/25/2024), opted out of adjuvant and dread salvage radiation. I've had low (post-prostatectomy, ultra-sensitive) PSA, but it has risen from the < 0.02 to 0.02 to 0.04.
My 8/27 lymph nodes pulled were positive, prostate was 4+5=9, Grade group 5.
My question that has not been answered by any Urologist, Surgeon or Oncologist: How did these 8 lymph nodes go undetected prior to surgery (2 months) when I had a PSMA-PET. They were theoretically large enough for detection ("7mm and 12mm in greatest dimension").

@krs03
I had around eight weeks of salvage radiation. Had absolutely no side effects at all. Six years later I did start to have some incontinence issues, but I’ve had surgery and then radiation so either one of them could’ve caused it.

I would not fear salvage radiation. Yes, if they do it in 20 or so sessions, they use more radiation and that can cause some urinary issues, But they are almost always mild and most people have found Flomax resolves it. This problem doesn’t seem to be as common if they have 35 or more sessions.

Your PSA is too low to really start worrying. What is the doubling rate, is very important to figure out if you will need something done soon. They normally don’t do anything till your PSA hits .2.

@krs03 You tell ME!! When I saw him gloving up I said to myself ‘WTF?’ After he almost made me scream I asked him why he had to do that since I had no prostate. He said ‘Hey, you never know…’
That’s when I knew I had to get away from this guy since I knew about PSMA PET; he was still practicing as if the tip of his index finger was the most predictive tool in his arsenal.
It probably won’t happen to you.
Phil

@krs03 Your 7mm and 12mm lymph nodes are not one big cancer lesion. Those nodes went undetected by the PSMA PET scan because any cancer present in them had not created a single lesion in those nodes of at least 2mm in size. There were likely numerous very small lesions in those nodes.

@krs03 My post RARP pathology report revealed a positive margin, plus my Prolaris report gave a 53% chance of BCR at ten years, even though I was intermediate risk (3+4). So my urologist always performed a DRE along with every PSA test. My PSA was undetectable for ten years (< 0.1), then rose to 0.11 in June 2025. My new urologist at that point was unconcerned, and thought it was just lab variation. When he got my previous medical records, I pointed out to him that a DRE the year before (with my old urologist, who had retired) have detected a palpable nodule but that my PSA was still undetectable at the time, so no further action was taken. My new urologist did a 180 at that point and referred me to a colleague in his practice who was a specialist in advanced prostate cancer. Another DRE with that urologist re-confirmed the nodule and that it had not changed much, but I was immediately referred for a PSMA PET scan despite my low PSA. Insurance approved it because of the presence of the nodule and my risk factor for a BCR. The nodule lit up with an SUV max of 13 on the scan (odd given my low PSA) but that and a subsequent pelvic MRI affirmed a local recurrence (no evidence of mets beyond the prostate bed), which then led to salvage RT.

Basically, the DRE, and detection of the nodule, was the key procedure and data that put things in motion. Without that, my new urologist would have just seen me again in a year for a routine follow up, or maybe in 3 months if I pushed him on the 0.11 PSA value. Also, there was no need for a biopsy since the data from the DREs and then scans clearly established the local recurrence.

DREs never have bothered me much. I had two transrectal needle biopsies on my prostate way back when. Those were miserable and painful experiences.

@jeffmarc The issues my husband is having post RP is unable to hold it and UI issue with leaking. Radiation coming soon 38 sessions. I see in your reply, and in some other posts about Flomax… during radiation. We both thought Flomax was for when you CAN’T go… but he goes more often than wanted right now. When he stands up after sitting for a while, it’s straight to the bathroom. So does radiation cause issues with NOT being able to go.

I was much-relieved to read about Proton Beam therapy as the better/best alternative to traditional radiation therapy. Problem is, not too many places have a Proton Beam therapy instrument/machine yet. Medicine is seemingly always in transition, and this reminds me of when every hospital got their own CT scanner years ago, only to have the MRI technology developed to actually "see" the tissue and what is going on functionally. Then 10 years transpired as the bigger/better hospitals got their own MRI machine. In terms of radiation therapy, larger hospitals all got the radiation therapy equipment over the last 10-15 years, but Proton beam therapy is now upon us, and only the bigger/best hospitals have it. "My" very large and great hospital does not have it, but three other hospitals within a 30 minute drive do have it. If/when I need "radiation", I am going to insist on a referral to one of the three hospitals that has Proton Beam therapy. The difference is: traditional radiation therapy goes "to and through" the targeted tissue and area intended for treatment. That is why radiation therapy results in scarred urethra, bladder, and rectal tissue...the radiation passed straight through the target area and zapped the surrounding healthy/normal tissue, such that it leaves many with life-long urinary incontinence, and the potential for bladder and/or rectal cancer years down the line. "NO THANKS." The beauty of Proton Beam therapy is that the proton radiation only goes "to" the target tissue area, but NOT "through" it to cause problems with the healthy surrounding tissue. So, there is no permanent, life-long urinary incontinence or risk for bladder and/or rectal cancer in later years. The risk of bladder or rectal cancer with traditional radiation therapy is very low...like 2%...but you don't want to be in the 2%, and you don't want to be wearing diapers the rest of your life with the near-assured urinary incontinence. I already had my radiation oncologist consult. Thankfully he said that I am "not yet" a candidate for it, because I have had my first three post-op PSA's with < 0.1 ng/ml results and one Ultra-sensitive PSA with a result of 0.006 ng/ml as was ordered by the radiation oncologist. He was happy with that, as was I. But, as I have offered before in a metaphoric phrase: "Prostate cancer is like a big black raven sitting on shoulder. You live the rest of your life walking around with the raven occasionally pecking your head saying: 'I'm still here, and one day I am going to kill you." I'd rather opt for Proton Beam therapy, and knock that raven off my shoulder for good.

@susanocl
Radiation is more likely to cause incontinence over time but not right away.

For some people, it can cause proctitis which makes things difficult, Some people get burning while peeing, AZO Can help if that occurs.

I had 25 sessions of IBRT and ADT for 6 months. Crap all over yourself bowel incontinent for 2 months followed by a 3 month respite follow by 2 urgent bowel movements after each meal and a handful of blood soaked toilet paper and soaking through clothing 11 months afterwards. GI apt Monday. My 6th month test was undetectable so something to be grateful for. If side effects and or undetectable were my choice I would choose undetectable everyday. Hasn't stopped me from living my fullest life.