Is this really worth it? (Its baaaakkk)

After prostate removal in early 07 (Gleason 6) & IPP/AUS 18 months later, psa is going up again from non-detect to .15 in May to .34 in Sept.  Will have coil implanted next friday (10/21) preparing for 39 IMRT treatments to begin (simulation to be on 10/28) treatments begin on 11/4.  I've read all the possible side-effects & now I'm depressingly frightened out of my wits.  I am thinking that maybe the cure is worse than the disease.  I'm thinking about canceling. I'm wondering instead about going to MD Anderson (10 hours away...I'm in Little Rock).  I'm wondering about HT or chemo or... what else should I consider?  I'm wondering about postponing.  HW members have been so helpful in the past & I need your experienced suggestions again.

Gene214 

Gene

Im also dealing with a reoccurrence (see my thread of the same name). IMRT for me wasn't so bad, and the side efforts were gone after 2 months. So my 2 cents is in no way should concerns about the side effects stop you.

Hope it works

Hi Gene,

I had the same feelings you have. And when I had to sign the release to go ahead, I was even more concerned, as it was far more specific and dire than the general warnings I'd heard before. Yet, with just two treatments out of 39 left, I'm doing (knock on wood) very well. My doctor even told me I could forgo the four-week follow-up and see him in three months.

So, you want to make sure you have confidence in your radiation oncologist. If he has performed this treatment a lot on PCa folks, is up on the latest techniques and has state-of-the-art equipment, you should be just fine.

Here's another way to look at it: radiation still gives you a chance of cure. Let's say it's 25-40% (kind of a guess as I don't know your stats). Note that chances of cure go down as your PSA rises before radiation. Your chances of nasty side-effects may be 3% or less. So is it worth risking a slight chance of nasty side-effects for a slight-middling chance to be rid of the disease for good and all? Plus, none of the other alternatives is potentially curative, so you'll be living with side-effects from other treatments for a long time.

But if the odds still don't feel good enough, then you might want to go for hormone therapy and try to keep the disease at bay until a better alternative is discovered.

Best of luck with your choice.

Nellie

I had SRT two years after surgery with no side effects. I figured it was my one shot to make it all go away. Odds are even in my favor - 55% chance of cure versus 0 if I did nothing.

The Sloan Kettering nomograms are here for SRT
http://nomograms.mskcc.org/prostate/SalvageRadiationTherapy.aspx

They may help you feel better.

I went through SRT last winter. Yes... the list of possible side effects can scare the heck out of you, and yes there are some people who have this treatment go back. But... there are many, many more that do very well, including me. I had some very minimal loose stool and a bit of fatigue near the end, otherwise this was a "non-event" (except for having to go for the four minute treatments five days a week for nearly eight weeks).

This is your window of opportunity for the chance at a cure. I would go for it while your PSA still is below .5. From what I understand, HT and Chemo are not curative.

Gene,

I was a 2007 G6 RRP and had a BCR in 3 years... posat RRP pathology had showed 2 focal point margins which uro thought would cause no issues... but they did... Good thing was that when BCR was indicated, G6 and small focal point margins indicated local issue and not distant... Best scenario for SRT w/o hormone... SRT (32 x 2gys = 64 gys ) had minimal side effects and appears to have had a very successful result... and I feel better today than ever before the initial dx...

Wishing you the best outcome and God Bless!

pasayten

Gene,

We are all different men, who respond to things in different ways. I understand your feelings. Not sure I have ever heard of someone losing all bowel control on this site, but not saying it hasn't happened.

Just wanted to say tho, that I would wear diapers for the rest of my life to spend a few more years with my wife, children, and grandkids. ( and my little dog )

I would be sure the doctor is doing full pelvic radiation.

Good luck. Be sure and keep us updated.

Goodlife

Post Edited (goodlife) : 10/14/2011 11:03:33 AM (GMT-6)

I had my SRT so soon after surgery that it almost felt like it was ART. And yes I had side effects from the RT.
However as I posted in another thread a day or so ago I am now 15 months on from SRT and the side effects have all gone, so bad as they may have been or felt, things are okay now. I am as continent as I was before SRT, which mercifully in my case is about 99%. I'm sorry you are not, but I hope the sling is helping.
As for my bowels, well I never messed myself after SRT. Yes I had to avoid farting without going to the WC in case there was something solid flying out too, and yes I farted more, but strangely it was never smelly farting. I also often had 5 BMs a day, which was inconvenient, but not a nightmare as it was simply a few lumps the size of grapes coming out each time rather than a large sausage.
My ED is atypical here as I didn’t really have any after surgery. More a case of my erection not working correctly than that I couldn’t get it in the first place. Currently I am having less sex than I was before SRT, but that is more to do with a busy schedule, than an inadequate penis (We’ve moved into a new house and we have had to do lots of work relating to that in our spare time.)
I felt very tired, especially by the end of the SRT itself. And that lasted about a year, it wasn’t constant after a while, but I would suddenly find that In was exhausted with no warning and from not having down anything. I found that exercise helped: in my case walking or cycling. It seemed like there was a wall to break through if I walked, as after 500 yards I wanted to stop and sit, but if I kept going then I could walk miles with no bother. I often cycled 10 miles without much trouble. Also found that keeping busy helped: sitting in a comfy chair thinking it was never going to get better was the worst thing I could do.
I made a point of writing down how things were prior to all my three-monthly check-ups, so after a year I was suddenly able to see in writing that there had been a great improvement.
Oh and of course the key thing was that the SRT made my PSA go right down. That goes a long way to helping recovery.
So I’d say don’t cancel.
Alf

English, Riviere, etc.  Just want to clarify that the aus is not a sling, it's a device which cuts off the flow of urine by gently squeezing the urethra & not allowing the urine to flow until I squeeze the valve in my scrotum.  Altho slings work wonders for ladies, they usually do not work for men with complete urine incontinence like myself.  Also, the IPP is an inflatable penile prosthesis.  There is no way I will ever have natural erections, but the inmplanted device works wonders on willy & produces a rigid errection which give both wife & me the pleasure enjoyed before prostate removal.

You guys/gals have done wonders for my spirits... again.

Gene214