I'm seeking input from those of you who may be AT LEAST TWO YEARS out from salvage radiation therapy (SRT) after a radical prostatectomy. I want to know what the LONG-TERM impacts of SRT have been on your daily quality of life regarding:
- Incontinence
- Sexual function
- Bowel control concerns
- Whether SRT had a positive impact on your recurrent cancer (i.e., drove your PSA down).
I also want to hear from those with really positive outcomes (e.g., minimal or no long-term side effects, curative).
By way of background, I was diagnosed in November 2010 and had a robotic prostatectomy in January 2011. My prostate came out cleanly, and my PSA remained undetectable for nearly 5 years. Then it became detectable at 0.05 and has been very slowly rising ever since. It's now at 0.26 and it looks like SRT is in my near future. I had a PSMA PET scan at UCLA on 30 November, and it didn't find anything either in my prostate bed or with distant metastases. My PSA may have been below the reliable sensitivity of the scan.
Because the surgery has left me with nuisance stress incontinence and very limited sexual function (one nerve bundle removed), I've been quite reluctant (fearful) of starting SRT because those things would only likely worsen.
Thanks in advance for your insights and support.
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dans_journey
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As they say, your mileage may vary, but you are on a similar path to mine. I had my surgery in 2011 but did SRT in 2015. Like you I had one nerve bundle removed and the other “pretty beaten up” according to the surgeon. Incontinence wasn’t really a problem unless I was lifting something or sneezing. Sexual function was greatly diminished. Bowel function wasn’t and still isn’t a problem. After SRT the problem areas got worse. I now wear a heavy pad during the day and a light one at night. However the SRT did knock the cancer down to undetectable again. It stayed there until 2017 and remained under 0.1 until 2019. I just finally had to start treatment again in December 2021. Was it worth it? I don’t know for sure but you have to make the decision based on the information you have at the time and today’s scans weren’t available then. It seemed the best choice then.
Thanks, ChicagoJ. I appreciate you sharing your experience. As you said, each case is unique but it's nice to have a sense of the impact the radiation has had on your daily quality of life. Wishing you all the best as you move forward with your own treatment.
It reflects the lived experience of 2,460 patients with a median follow-up of 5 years. That's many more than you will ever find on this or any other forum.
As for side effects of treatment, it will depend a lot on your symptoms going in. It would be reasonable to expect urinary side effects to get worse, ED may get worse, rectal side effects usually don't.
I appreciate the nomogram; it confirms what my own research had told me about the success of SRT. I do not, however, appreciate the condescending attitude in your opening line of your reply.
I've been popping in and out of this site long enough to know that you're a numbers guy, as am I. But nomograms don't tell me the actual lived experience of those who have had SRT, and that was the purpose of my post. It's unfortunate you didn't understand that.
You said that it's "reasonable to expect urinary side effects to get worse," and ChicagoJ's response above gives me one example of how to quantify that. And that is exactly why I posted this in an advanced prostate cancer forum—to gain those personal experience insights.
And, yes, I know that every case is unique and that my experience will, in fact, be different than ChicagoJ's, but it's helpful to know the range of experiences going into something like SRT.
I've learned much from your posts and expertise over the years, and I know many in this forum would say the same. Please avoid deriding people who are seeking help and information in the future.
We all have a tendency to overvalue anecdotes from people we can see and to undervalue statistics from people we can't see. There is even a term for it - the "availability heuristic." We ALL do it- and we all have to defend against it - it leads to bad decisions. And when one is faced with life or death decisions, bad decisions can be fatal.
Every single one of those 2,460 men had a "real, lived experience." It's too bad, and possibly harmful to your health, that you can't see that. If you want to "quantify that," you cannot rely on ChicagoJ's experience, you have to look at what happened when hundreds of men in a similar situation are treated, as in this study:
You asked for opinions from men who have advanced PCa - you are certain to get biased anecdotes that way. If you perceive that pointing out your error is condescending, than that is how you chose to take it.
My initial treatment was IGRT. A few years later biochemical recurrence. After salvage brachytherapy I had no prostate and sex was discontinued. I’ve also fought stress incontinence. After a few years biochemical recurrence. PSMA shows cancer hiding in seminal vesicles. It partially responded with Lupron and when casodex was added PSA <=0.1. Lupron had multiple side effects affecting QOL including acumen, weight gain, and leg pain. Now doing casodex mono therapy and working to get my arthritis under control.
Caution!!! We are all different, so what's good for the goose may not be good for the gander.
Greetings: Radiation - I've posted this before so to those people who have already seen this please forgive me.
I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.
I haven’t looked at your site for a while but always enjoy it when I do - great photography.
And I get your desire for “real life” experiences cf. a purely numbers-driven decision making process.
Quick summary - RRP Dec 17; pre-op PSMA PET showed no EPE or SVI, so it was a surprise to wake up with pT3b.
Undetectable for 5 months, then came back with a ca. 4 month DT… it was around this time (May 18) that I found your site, and enviously watched your meandering PSA.
After experimenting with Care Oncology (which may have slowed DT) I opted for eSRT at PSA 0.117 and another negative PSMA PET. The view from my RO was that the negative PET is frustrating because there’s nothing to shoot at but on the other hand, it means there’s nothing huge out there. I did a year of ADT, including 8 months of abiraterone, because of my high Decipher (0.91), and went undetectable as soon as the ADT started.
ADT was supposed to wear off in Jan 20 and T was first detected in July 20, reaching full strength ca. 600) 3 months later.
I found the 36 sessions hard insofar as needing to have empty rectum/full bladder etc goes, but otherwise unremarkable.
In terms of continence, Australian practice mandates a lot of pre-RRP pelvic floor exercises, and this paid off for me - continence was regained within a few weeks except under very high stress (lifting), and I did a lot of landscaping after about six weeks that gave me lots of chances to practice clenching when lifting really big things - the net effect is that continence recovery has been good - very few accidents since.
SRT has made no difference to this, but 20 months after it I had a few episodes of blood in urine - no pain and a kidney CT found nothibg. When it recurred I had a cystoscope exam and the Urologist said there was only very minor radiation damage visible. It cleared up after a few days and has happened once or twice again - I have very low platelets (<30) so this may exacerbate the situation.
And sex? Despite nerve sparing, erections never returned. After 4 years (Feb 21) I had a sural graft procedure that is supposed to have a 70% chance of fixing the problem by short circuiting the damaged nerves - a year on, not much happening, but they say it can take a couple of years. Most importantly, pre the graft I had a penile ultrasound using Doppler to check for venal leakage as a result of radiation damage, and it was all good - Trimix continues to work, which I think is a more practical demonstration that the radiation-induced scarring hasn’t been too bad. The guys doing this tell me they do see quite significant scarring and associated leakage, but it’s by no means always the case.
So… continence and sex are important but of course, so is “the cure” - my MO was not optimistic because SVI usually means recurrence, and the Decipher is/was damming … but he says he’s now optimistic.
Personally, I think it will recur - maybe this is just me trying to manage my own expectations, but primarily it’s based on looking at many studies that show BCR continues to happen out to 20 years (by which time most guys are dying of something else). What I would say is that I suffer minimal PSA anxiety when tests are due - I figure I’ve done all I could, and will cope with what comes next.
In summary, I see eSRT (albeit + ADT, given my Decipher) as having “worked” to give me an extended holiday, and maybe even more - and the side effects have been minimal - but that was with an exceptional radiotherapy team at Peter Mac who took incredible care with every single set up.
Dan, I had my prostatectomy in November 2018 with nerve sparing. PSA wa immediately still detectable so did SRT combined with ADT starting in Summer 2019. 39 sessions daily, M-F, for 8 weeks. The radiation sessions were super easy just lying there without any discomfort. I was warned about becoming overly tired from it and that I should exercise to counter it. I was training for a century bike ride during this time and never felt an impact.
The results are that my PSA has remained undetectable 2 years later. Incontinence is minimal but unpredictable. I will occasionally wear a thin pad but not always. No change to bowel functions. There was not a lot of time between surgery and SRT so I don’t know the impact of SRT itself on sexual function. Diminished since surgery but functioning with meds. Testosterone levels never returned to prior levels but made it back into the low end of normal range.
SRT in March 2016...no side affects then or now. Unfortunately, it did not work. The "standard of care" then was if BCR, then SRT to the prostate bed. Kind of like the dumb bomb carpet bombing of WWII.
I had discussed with my medical team that given my clinical history, should we not include the PLNs and six months of ADT.
Their answer, we don't have the long term data...sadly, I acquiesced...! Last time I did that!
Consequently in Jan 2017 I did triple therapy though nobody on my local medical team agreed with me. As you can see from a clinical history chart I keep, that's worked for now.
My short term effects were a combination of radiation and Lupron. Pelvic insufficiency fractures, which meant crutches for a couple of months. I am a low grade gym rat, so much of the blame was the 60 lb barbell. Dexa scan, calcium and Prolia injections. I am doing fine and back in the home gym.
Incontinence slowly worsened after radiation. Two pads a day. Kegel 40/day. Rx for bladder spasms made a major improvement. This is not uncommon with radiation. I have decided to have an artificial sphincter surgery, this spring. Personal choice, not a necessity.
Sexual function- I am 79 and stiff erections were lost before radiation. I have no erections after radiation, but on the positive side, cancer and radiation does not affect the sensation of the peroneal area. My wife and I, can still play and have lots of fun.
Bowel. I have occasional diarrhea about 2 to 3 times per week, but one over the counter anti-diarrhea pill solves the problem. This always occurs in the morning.
My PSA last week was 0.006 and my testosterone 160. After surgery my PSA was 0.2.
Now the big question. Would I do it again? Absolutely. I would rather possibly prevent a problem, then treat it after the mets show up. The long-term side effects are an inconvenience, not a disruptor of life.
My self-treatment includes exercise, melatonin 50 mg daily, and Celebrex 200 mg BID.
Tall Allen is correct. This is only my story. Pay attention to data.
Sidenote. My first radiation oncologist recommended the prostate bed only and not the pelvis. My second radiation oncologist recommended pelvic radiation. That made sense to me, and it is what I did. I am only one data point, but for me, it was the correct decision.
Damn they’re all different types of delivering salvage radiation and your side effects and experience with the treatment will vary depending on what the radiation oncologist and you decide in your case
One of the things that is very frustrating here on this site is radiation as often referred to as a constant when in fact the modalities of delivery effectiveness and precision have changed incredibly in the last 20 years and are changing rapidly at the present time
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