Long term side effects from salvage radiation after radical prostatectomy

[SCreader]

Hi folks, I'm considering salvage radiation (~34 treatments) after a prostatectomy where the PSA didn't drop below .2. I'd like to get a feel for how common the long term side effects of Salvage radiation (to bladder, bowel, hemorrhoids, etc.) are, by hearing your experiences. Thanks in advance.

[SCreader]

Good point... I should mention that I don't have urinary issues from the RP.

[SCreader]

I expressed an interest in Orgovyx, so the RO says he'd start ADT the same time as the salvage. Because I'm not in bad shape from the RP, I'd hate to make things worse with the salvage. I'd like the option of doing ADT alone, but according to my RO, it's not an option.

[SCreader]

The only scan I've had is a pelvic MRI prior to RP. Post RP, the PSA is too low (.25) to find much, if anything according to the RO.

[rickyfish56]

At OSHU, in Portland Oregon, a "Cancer Center of Excellence", they did PSMA scan on my biological re-occurance, four years after surgery, even though my PSA was only .17. So yes, it may not show anything, but then again, why not look? I have had no side affects from 6 1/2 weeks of IMRT radiation, that I know of. I do have "hot flashes" from the Lupron, but no big deal, tolerable nuisance. Main thing is, go to a Cancer Center of Excellence for your treatments, the more treatments the treatment center has done, the better the outcomes, some "techniques" involved that get better the more they do! In my prayers and thoughts!

[SCreader in reply to rickyfish56]

Many thanks for the feedback and prayers.

[maley2711 in reply to rickyfish56]

we might be neighbors...who have been your Docs at OHSU???

[Cyclingrealtor]

This has been my experience:

RALP in Sept 21

Recurrence in late April 22 PSA @ .1

By mid June 22 PSA was @ .4 and PSMA pet showed a single lymph node in right iliac area.

Jul/Aug 22 - started Lupron and 33 rounds of EBRT whole pelvis and focal to the lymph node and finished by 9/1/22

While being treated I had to drink tons of water before treatment. Between the water and the radiation I had some really bad poops for 3 - 4 hours after treatment each day.

As far as continence, I'd say the radiation knocked it down a notch. I had really good continence but have stress incontinence. And more so when I have a full bladder.

The first few months of Lupron sucked. Sad, tired, fatigue and muscle loss and weakness. Most people don't notice it on me but I sure do. It's that much more incentive to continue working out and riding like always have.

Added abiraterone in January.

[Lewis22 in reply to Cyclingrealtor]

Hi! We have had similar experiences in relation to surgery, recurrence and salvage. Have you had a recent PSA test? Obviously, I am concerned about the effectiveness of salvage radiation and it would help to know how you are progressing. Thanks.

[maley2711]

I don't know about salvage RT, but a recent meta-analysis I read concluded that neoadjuvant ADT added no benefit.....concurrent and post for x months did. I'm guessing there have been studies showing a benefit, but that was their conclusion based on a large number of studies.....for men who will have initial RT, not salvage, an enlarged prostate ( your truly ) might warrant neoadjuvant to to shrink prostate before RT.

Just IMHO...buyer beware as always......always better to look at studies yourself using Google and pubmed.com. Wish I had all that I have saved well-organized ..but always take some more work to find what I have saved. TA probably has a blog about the question!!

[Hawk56]

SRT in March 2014, no SEs to date. I contribute that to the technology, my radiologist and her team. Since then, the technology has definitely gotten better. As you can see from my clinical history, had radiation treatment to the PLNs in 2018, again, to date, no SEs, same radiologist!

Clinical History

[Murph256]

I had salvage radiation 8 months after my RP. I would categorize my SE from the radiation as moderate to severe, although my surgery could be the primary cause of some of my side effects. My salvage radiation didn’t work, so I am currently on intermittent ADT. My side effects are much more pronounced when I’m on ADT and less pronounced when I’m off ADT. For bowel issues, I have experienced irregularity and diverticulitis since ration. Those SEs have nothing to do with my surgery. My ED began with surgery and became much more severe after radiation. Only now 4 years post radiation and on an ADT vacation has my ED improved. Likewise I have experienced incontinence since surgery, and it became much more severe after radiation. And again, only now, 4 years post radiation and on an ADT vacation has my incontinence improved. I wish I could be more positive about the side effects of my treatments.

[SCreader in reply to Murph256]

Thanks Murph. Interesting profile story, unlike I've read before.

[Ingress]

Just my experience and FYSA I’m in Italy. My RO would not do salvage radiation after my RP. He said, a) without knowing where the cancer actually is I’m not going to blindly hit you with radiation and b) it may very well do more harm than good. As it turned out, I didn’t have anymore cancer in the prostate bed.

[Justfor_ in reply to Ingress]

Kudos to your RO!

[SCreader in reply to Ingress]

Hi Ingress, did you have any treatment, supplements, etc. while you were waiting for the next PSA test?

[Ingress in reply to SCreader]

I did not. After my radiation I was not taking any meds at all until the 3rd PET showed the Mets. When I asked the RO about it he said that meds, ADT, would probably suppress the cancer and we wouldn’t be able to find out where it was to see what the best next treatment might be. That made sense to me and as soon as the PET showed the mets I started Lupron in August 21 and Chemo in Sept 21.

[Cancer2x in reply to Ingress]

Good Doc! Agree!

I see it like this:

You find mouse droppings on the kitchen floor (PSA ). Don’t see, or know, where the mouse/mice may be. So you set traps to physically get them (Surgery), you get a couple, but find more droppings. SO, you wait until evening when you figure they may be about, and slide a shotgun under the kitchen door (Pelvic Radiation) to hopefully get ‘em all at once. You may, or may not find/kill some, but you WILL definitely hit the cabinets and the plumbing!

Get a couple more, but still finding droppings, now in the upstairs rooms as well (distant Mets). SO, then you seal-up the house, and run a big hose in with poison gas to try to fumigate the whole place. Get a lot more, but a few may still be hiding in the walls to appear later.

All these “treatments” are somewhat efficacious against the varmints, but ALL come with varying damages to the house (YOUR BODY)!

You need to have a good team of carpenters, plumbers, and electricians to help mitigate the damages as they occur. And a close friend(s) to bitch about all the destruction and reconstruction which might be occurring simultaneously (THIS PLACE).

That’s Prostate Cancer in a nutshell to me.

Good luck to all of us, and our doctors!

[Redzin]

I would be careful. Dr. Kwon has seen thousands of people like you and his work shows that only 30% of recurrences are in the pelvic region. Why out yourself through "blind" radiation if you do not know where the cancer is?

[SCreader in reply to Redzin]

My feeling too, but I'd like to know what else I can do other than wait for each PSA result. I read "...(12%) men had PSMA-avid recurrence only in the prostate bed.": pubmed.ncbi.nlm.nih.gov/309...

[Peace-to-you]

RP + Rad = shrinkage

[Cooolone]

Looking at your Bio, shows your PSA trending downward, is this correct?

What SOC scanning has been done? PSMA as well?

[SCreader in reply to Cooolone]

No, mostly sideways. The profile has been updated to include the 3 PSA results to date. No scanning has been done because the RO feels the accuracy rate is to low at .26, but as others have said what would it hurt if insurance would pay for a PSMA.

[Cooolone in reply to SCreader]

Well, waiting for PSA to rise is a conundrum... Maddening it may seem? But don't we want to "see" what we are treating? The cause of the PSA activity, not treat the PSA itself. This is the cause in recurrence. Salvage vs Adjuvant therapy...? But it looked steady, or your "sideways" which in a recurrence setting a PSADT of >6 months is a good thing (in a way). So waiting to see might not include extra risk. But I'm not an oncologist. I got a PSMA-PET Scan at low PSA, but I've been a LOW PSA (and PSMA) producer throughout my journey, everyone is different. @<.5ng PSA I would see advantage in the PSMA scan in limited circumstances. I was already into "systemic therapy mode" whereas those in a more direct salvage therapy mode may benefit waiting and seeing if targets that might provide curative attempt is beneficial to them by waiting. Remember that second line therapy is possible to put the cancer to bed for a long, long time, ie, curative. It's important to proceed cautiously and not rush to decision. If the diagnostics allow for low risk of metastatic disease with a low/steady PSA post RP, it may be remnant tissue, not necessarily something missed that's more aggressive and growing. Diagnosis will be key! Again, there's no benefit that's been identified to adjuvant therapy vs waiting in a salvage setting. Waiting to reach even 0.5ng where a PSMA scan is still only 65% effective could take a long, long time. And that's not such a bad thing other than the anxiety that comes with watching it rise so slowly. But I can assure you, it's better than seeing it double in a month or two, lol.

Best Regards

[Brook5318]

I am seven years out from radiation. Just had a case of severe hematuria last summer. It took three trips to the E.R. and several catheters to get past it.

[Explorer08]

I had RRP in 2011 and salvage radiation in 2013. The only side effects I’ve had include 1) bladder neck contracture and 2) bladder spasms. Controlled with Myrbetriq. My urologist at the time made a big mistake in not giving me Lupron prior to the salvage radiation but I didn’t know any better at the time.

[lithocam]

I had RP followed by ADT and salvage radiation. ADT was started 2 months after surgery. SBRT 7 months after, with 33 doses. Side effects began about half way through radiation and got worse from there. Bladder problems (mostly peeing more at night) for 4 months. Bowel problems (soft stools and mild diarrhea) persisted for a year and a quarter, then gradually tapered off for another year and a quarter. Back to normal now. At some point during radiation + Lupron + Casodex my libido left the building. Everybody is different, though.

[roadrider]

I had an RP ~ 8.5 years ago and salvage radiation roughly 4 years later. After the RP it took me about a year to regain my continence (no pads needed) and Cialis worked for me. After the radiation I have had major problems with continence (up to 2 large pads/day) and the Cialis does nothing for me. YMMV.

[SpencerBoy11]

Very, very remote possibility that radiation may cause myloidysplastic syndromes (MDS) which has happened to me. Knowing then what I know now, would still have done the radiation. This was never mentioned to me, or probably anyone else. But I think everyone should know as much as possible before pulling the trigger.

[Margoto]

Everyone is different. My husband still has side effects after seven years. 44 radiation treatments but no surgery.

[j-o-h-n]

Here I go again for the umpteen time...

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 in 2005 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.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2023 12:16 AM EST

[SCreader in reply to j-o-h-n]

Hi John, were you told how the damage to the urinary track could have been prevented?

[j-o-h-n in reply to SCreader]

No, I was not..... But after all was done I learned here:

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.

Note:: "Urinary tract issue" Urologist was not sure from passing prior kidney stone(s) or radiation.

So I leave you with six of one or half a dozen of the other. Sorry - Regards.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2023 12:45 PM EST

[RMontana]

…the one thing I would have liked to have known when I got my salvage radiation what that my normal erectile function would never come back. Had I known that I would’ve moved a lot faster to get an implant. I waited and there are consequences to doing that. This is my history. If it’s of use. But radiation has definitely save my life. It also comes with a cost which you don’t appreciate in the initial phases of this disease. All u think about staying alive and once we realize that we’re going to live we start looking back at all the consequences of our treatment. Good Luck.

healthunlocked.com/active-s...

[maley2711]

?????

[plato123]

I'm on 27 of 39 rad treatments, plus ADT - following SSPORT trial protocol. No. SE's, some hot flashes at night. Working out daily, weights and swimming, water polo. my rationale hit the CA as hard as I can so I can hopefully live a CA free life in the future moving forward.

[j-o-h-n in reply to plato123]

Oh Plato if only I was Greek, I would say to you: then apaxi chorís frontída. Mea kataleventes...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/11/2023 10:34 PM EST