Members Comments Also Needed: How did Salavage Radiation (SRT) or Adjunct Radiation affect you?

I will start it out, as I had SRT after surgery. My surgery was considered failed within 9 months of surgery, though the signs that it was going to fail were there from my first post surgery PSA, with a .05 number. My urologist said at the time, that it didn't look good, that weighed in with my extreme PSA velocicty issues pre-diagnosis.

Once I had 3 consecutive PSA readings above .10, BCR was declared. It started out simple enough, I was referred to the largest radiation clinic in my area, and I interviewed 3 different RO's. Didn't care for the first one at all. The 2nd one wanted to do HT with the SRT, but when I pushed him for specifics, he ended up saying that he couldn't prove it would help, and he couldn't prove that I needed it. The other 2 RO's in the same clinic were openly opposed to mixing SRT with HT.

The plan was to have my SRT in the form of IMRT, 39 sessions delivering 72 gys of radiation. A pretty big dose for radiaton as a secondary treatment, but that is what they thought was best.

The only snag, was that as a result of my surgery, I had endless stricture problems, endless catheter time, and 3 operations to correct strictures. Since radiation is known to cause swelling and possible urinary retention issues, it was decided by both my urologist and the RO, that I would have a suprapubic catheter in place the entire time of radiation, and perhaps a month after it ended, to eliminate the fear of having a serious stricture issue while being radiated.

The problem was, the RO allowed me to have all my radiation with an empty bladder. With the cath in place, my bladder was constantly empty. It would have been easy to have a full bladder, by either clamping off the cath prior to each treatment - have me drink water - then release the clamp after the session. Or, they could have syringe in the needed water on the table each time, then withdraw it after I was zapped. Neither method was used, and when I questioned the RO about not being instructed to drink water, her famous words were, "Don't worry about it, I got that covered."

The rest of that story is the basis of on-going litigation against both the RO and the radiation clinic.

As a result of being radiated dry, I began to report being burned on the 4th of 39 treatments. When the IMRT machine indexed to the 6th position (I believe), I would feel an intense burning in my bladder area. I reported this to both the RO and the operators, and it was mostly laughed off as my imagination.

This continued for the remainder of my 39 treatments. The burning got worse as it progressed, bad enough to where I had to be helped up and off the treatment table, and could barely walk back to my car.

To make a long story short (as many know it by heart), I was never able to urinate without extreme pain after the radiation treatments. I had to have the catheter in place for 51 weeks, nearly a year. Every 4 weeks, the tube was changed, and it was one of the most painful experiences of my life, that and the literal thousands of burning bladder spasms I had experienced.

In the end, I had to submit to a bladder by-pass surgery, Ileal Conduit Surgery. 5 1/2 days in the hospital, to end up with a perm. stoma, so I urinate from a hole in my side into a disposable device which has to be changed 1 or 2x a week, and have to hook up to a catheter bag every night before going to sleep. The surgery is not reversible. This was the result of my bladder and bladder neck being burned so severely.

In less than a year after the by-pass surgery, I began severe chronic pain and fatigue, associated with the radiation damage. My oncologist has diagnosed this pain as "cancer pain" due to the radiation having done perm. and severe nerve damage.

So for me, radiation was a major mistake and disaster in my life. And btw, the radiation failed to slow the cancer down despite the damage, and was considered a failure within 9 months of completion.

david in sc

Subic,

Glad to hear back from you. Assuming you haven't had any more stricture issues after your initial bout. Sorry you are still dealing with the urinary issues, seems to be common with many after SRT. Glad you are still undectable, looks like at least the radiation worked for you, that part is great.

david

People are probably sick of hearing my story, but here goes:

I had a Da Vinci RP in early 2006, and my first PSA was undetectable, but the next one wasn't, and by the time I had another one, it was clear my PSA was doubling quickly (less than 90 days).
I had positive margins, Gleason 3+4. Staging was T2c. The day before I started SRT my PSA was 0.7. 4 months earlier it had been 0.2.

I had IMRT, 38 sessions, Jan-Mar 2007. My first PSA was detectable, just barely (0.1), but the next one was less than 0.1, and it has stayed there since. May it be forever so, world without end, amen. :) This summer my radiation oncologist released from his care and now it's up to me and my primary care doc to check my PSA. I'll do that next month.

I had acute radiation proctitis (in the form of very painful bowel movements, and more frequent bowel movements verging on diarrhea) starting near the end of my 38 SRT sessions. The loose bowel movements were controlled with Imodium (loperamide HCI) and the inflammation was cooled down by Proctofoam HC (hyrocortisone and praxomine in a foam--envision a miniature fire extinguisher).

The worst of the proctitis ended within a few weeks of SRT. But the loose BMs persisted for longer, gradually lessening over months. I also had the "don't trust a fart" syndrome that many have described, but that too seems to have dissipated. Funny enough, it went away almost entirely after I went through the prep procedure for my first screening colonoscopy at age 50. Maybe I rebooted my colon!

The colonoscopy was normal except for some diverticulosis (not diverticulitis). No polyps or anything like that. No sign of radiation damage.

I don't have any bladder issues from radiation, and as far as I can tell, it did not worsen the ED caused by the prostatectomy. I'm dry 99.9% of the time, only losing an inconsequential drop now and then, and the ED is not bad. I have a script for Cialis but hardly ever use the stuff. Too expensive for the marginal benefit it adds.

I don't have a crystal ball, and I'm aware that the next PSA could always be the one I don't want to hear about. But I think every zero I get puts me closer to saying "cured". I am also aware that my next colonoscopy might show a radiation-induced tumor, or that I could get some other cancer from the IMRT. After all, I had it at age 44. I have a long time for the buggers to get cooking.

I don't do anything particular as far as diet & cancer goes, but I have lost significant weight with Weight Watchers, and I try to keep the donuts and burgers to a minimum, and eat lots of fruits and vegetables. I bike quite a bit--over 100 miles in the last week, for example, and I can exceed Special Forces entry requirements for pullups. Pushups are a different story (Casey may recall that I have tried the 100 pushup challenge--no dice so far!)

So I'm very satisfied with my own SRT experience, but vigilant, and well aware that others have experienced just the opposite.

I had SRT a bit earlier than most guys here would recommend. My 3 increases in PSA, staring about 18 month after open RP, were only .04, .05, .08. At that point my Uro strongly suggested to go for SRT. At that point my PAS was at .1.
So, about 2 years after my RP I had 66gy over 33 working days. During the last 2 weeks of that, I developed some anal discomfort and minor bleeding. Other than that I had no problems. The anal issue turned out to be hemhorroids probably as a result of the treatment. At times they still bother me a bit.
Now, after 4 years, I'm pretty much back to my old self, except now I'm 6 years older since being diagnosed. My PSA is at <.04.
Even so my SRT was started a bit earlier than most here would recommend, it seamed to have worked and I have no regrets.
Wishing all my brothers here well and may you all have a great holiday season.
Mag

I came close to starting this thread myself.

Post surgery, I got down to one pad a day, and was actually starting to plan business trips again.

ART was based on my miserable path results, and started about 25 weeks out? (details in the thread linked in my sig).

As with some others, my PSA was <0.1 for a couple of tests, but came back with a vengance. Just to add misery to injury, my pad use jumped back up to 2-3 per day, and the RT burned the scars from a previous rectal surgery, as well as causing radiation cystitis in my urethra.

Bottom line (yeah, a pun is coming), I have incontinence issues, both urinary and rectal, with no less than 4, and often as many as 8 BMs a day (not diarrhea, just often), totally unpredictable, with extreme urgency. The recent issues with urinary incontinence include blowing blood clots.

Job wise, it has cost me my travel and training job. Working at home every day sucks after having lived on the road for 300 days a year.

My post surgery path showed I had seminal vesicle invasion, so I knew all might not be going to be okay, still the uro guys decided not to recommend me for Adjuvant RT, but to wait to see what my PSA actually did.
Thus I was thinking I was a likely candidate for SRT from that point.
First post surgery PSA was 0.1
My second post-surgery PSA done 8 months after surgery was 0.4. My "Uro" took me straight out to reception to make me an appointment to see a Radiotherapy doc within the week at the same hospital. I say "Uro" as in actual fact I was being dealt with by a nurse practitioner at the uro department and then at the rad department was dealt with by a physician assistant, but the two guys (Willem and Robin) work together on how best to treat PCa guys. (Thus Willem from uro sat in on the Rad meeting to plan my treatment at which I think 3 doctors from the rad department plus Robin were present.)
I had prepared myself for SRT, so it was not a big shock and had done my research so had no questions when I was seen by Robin. The unknown things for em were just the practical things like which room did I have to go to a which time etc.
Prior to SRT I had also got my continence fully sorted and would have described it as the same as before surgery. ED too was absent, though despite being able to get erections I hardly every experienced even a tiny orgasm.
I had 66Gy delivered over 33 sessions and without HT. I had no problems during the SRT other than tiredness, a little bowel "discomfort", extra farting and needing to pee a little more frequently.

However, all that really mattered to me was that first post-SRT PSA reading which came in at "less than 0.1" (the lab didn't test any lower).
Being in the zero club made other things more bearable.

After SRT tiredness turned into fatigue, a fatigue lasted over a year and even now over two years after SRT finished I still have less energy than before the SRT. (It's a bit like the SRT removed my reserve fuel tank)

My bowel discomfort soon turned into problems with BMs as they became frequent and unpredictable. I had as many as 6 a day, but also had to get up once or twice in the night for a BM and when the alarm goes off I now often find I need a BM when I go tot the bathroom.
BMs now down to 2 or 3 a day, but they now don't seem to finish properly and I have to use a lot more toilet paper.

Continence gradually got worse, I was having to pee at least once an hour and get up a lot at night, but the biggest problem was having frequent small dribbles, so two years after SRT I went back to wearing a pad in the day time. I can just about manage pad free at night, but in the first half hour or so after I lie down to go to sleep it feels like my bladder is simply not shut.
Wearing pads all day has also resulted in the ocassional rash on my penis, but a simple anti-fungal cream has sorted that out.

I can still get erections, and still can't manage orgasms (not sure what that says about which nerves were saved and which were cut/damaged.) However I don't get erections as easily as before and therefore not as often, ie because having sex takes a lot more effort it's harder to find the time required. Also, dribbling urine gets in the way of sex too, so I am reluctant to start doing anything much with a penis that leaks urine.

Finally there is one strange aspect of having had radiotherapy. I find it is now much easier to empathise with others I know who have had cancer, as nearly all of them have had RT of some sort, whereas nobody I know has had robot surgery.

Alf

David - I note that you say that you have not had any bowel issues and, to me, that is yet another indicator that your SRT didn't get aimed the right way.

David. for me it doesn't feel as rough as it could have been.
I used to date this girl whose sister dated another guy. I recently discovered that he had also been diagnosed with PCa, but I learnt this when I read his obituary as it killed him in less than 3 years. So I think I'm doing fine to be "less than 0.01" three and a half years on from dx. (Given my post-op pathology I feel I am much better than where I expected to be.)

I was also expecting the treatment of my PCa to leave me with complete ED and it didn't. Even the muddled/messy sexlife I have is better than no sex life at all.
I was expecting the treatment of my PCa to leave me with quite a bit of incontinence: I only have very slight incontinence. I can easily cope with one slighly moist pad per day.
I'm a lazy guy at the best of times so the fact that something has made me tired has not chanegd my life as much as it might change the life of an active guy!
I never slept well and always had to get up to pee, so getting up three times a night to pee instead of twice and lying awake for three hours instead of two may be a minor issue at the end of the day.

I was however not expecting my treatment(s) to have such an effect on my bowels, so that's the only area where I feel improvements would make a big difference. But maybe I have to go so often because I am so full of sh1t. (I still have my sense of humour too! Laughter the best medicine uness you've got stitches)

I suppose what I'm saying, and I expect that there are a few of us here who have thought the same, is that when I hear about all the problems you have had and are having it puts my own niggles into perspective and frankly I shouldn't be so feeble as to think I've got anything to complain about. But I feel bad about saying that as it hardly helps you. So I hope they sort out something for your cramps and pains and for Peg's too.

Alf

I started salvage radiation (IMRT) about 2 1/2 years after surgery.  I received 68.4 Gy to the fossa, nerve bundles, bladder neck and small section of rectal tissue.  I had no problems during treatment.  I developed a bladder neck stricture 3 months after SRT and radiation colitis about 14 months after SRT.  A simple dilation took care of the stricture and the colitis disappeared after a colonoscopy.

I'm not aware of any side effects at the moment and my PSA is stable (at least until the next check).

My SRT ended 1.5 years ago. I began it 2 years post open surgery.

Except for a little hair loss in the area of my surgery scar I didn't notice any side effects to radiation and had to take it on faith that anything was happening at all. I was able to drink my water, take a break, and drive the mile to the clinic for the 38 treatments. My wife claims I was a bit more irritable during that time but I believe I was the picture of sweetness and light.

One year post SRT I noticed that I am more apt to have blood with my stools then before so the radiation may have acerbated an internal hemorrhoid issue I've dealt with for 40 years. Stools may be a bit looser then before too but I wouldn't swear to it.

I did seven weeks of ART in 2011 following RP. But this was not my first radiation session. I did seven weeks of radiation in 2009 for stage 3 throat cancer – as well as chemo. That radiation was a bit devastating as my throat completely closed up for a few months and I couldn’t swallow anything. So the ART for prostate was much easier to take. Fatigue, yes, but at least I didn’t end up on intravenous. Peeing came back under control quickly. ED has been total since the RP so I can’t tell whether that is a result of RT or surgery or both.
One year post treatment, I’m okay. I run out of energy easily and, having been through cancer twice in three years, I’m always expecting recurrence. Not a completely unreasonable worry given the t3b, tertiary 5, positive margins etc.
But as far as I can tell, the prostate radiation process has been successful so far (touch wood) and was the least difficult cancer treatment I’ve been through.

Hello Purgatory,
I can certainly relate to your comments about taste. My sense of taste was certainly changed and I lost quite a bit of weight. Still can't taste sweet or produce enough saliva. But I am happy to report that beer tastes just as good as ever! Maybe even better.

The last three years have not been best, but I am not going through such tough times as you seem to be.

I wish you the best.

Mel
Fatigue kicked in about two weeks before SRT finished
BMs became frequent just as SRT was finishing.
continence got worse about two years after SRT
Erections started becoming less easy to get about 18 months after SRT

David - Yes we are all different and have all had a bad time one way or another. While I can't help but compare my own situation to that of others, that's part of what happenes by coming to HW, I don't feel that I'm okay simply because someone else seems to have more problems than me; it's more about learning to accept one's situation, while still trying to do all one can to make things better. Also the way I feel about my ssituation changes from one day to the next.