SRT and ART survivors! How are you doing?

Good thread topic.

You don't want my story, its one of the rare disaster stories after SRT

Because of SRT, I was left with a burned up bladder and bladder neck, plus severe nerve damage.

As a result, I had to have Urostomy surgery in 2010, to bypass my badly damaged bladder, and I urinate from a stoma in my side into a plastic bag essentialy.

The nerve damage left me with severe chronic pain and severe fatigue, both situations are permanent.

All, because the RO allowed me to have all of my radiation treatments done with an empty bladder, because I had to have it done while wearing a Suprapubic catheter in place because of all my previous chronic stricture issues.

The damage from the radiation was in both immediate damage, and long term damage, and the nerve damage and pain is still spreading through my body almost 4 years later. SRT ended late in 2009.

While this doesn't happen to most men, the warning is that radiation can cause severe damage. My case may be rare, but it's not unknown among men that undergo radiation. A lot of damage can be caused.

I know my stories sucks, but you asked, and thought I would just re-tell my story.

David

Still amazing, Tony, with your original dx and pathology report. But so glad for you, especially due the young age you were at dx. Hope it stays that way forever, or for many years to come.

David

I finished eight weeks of daily intensive radiation via IMRT & IGRT and found myself to be very exhausted and I needed much more sleep and still felt tired. It appears that there have been no negative developments that have raised their ugly head. I had an increase in urgency to urinate, trouble with dripping before and after going to the bathroom, but that is now getting better,

I do wonder what problems will surface in 2-6 years. Hopefully none, but if there are I hope they are minimal.

I don't think we've heard PSA updates from these guys, who had SRT some time ago, and as of last update, were doing very well. I'd sure like to see how they're doing:
Pasayten
Norskie
Pelahatchie
Bootheel
Hawkfan75
dsmc
Miltdav
Mozart250

Joe,

ART (66.6 gy) not quite a year ago. I had been upgraded from Gleason 7(3+4) to Gleason 9(4+5) w/ positive margins in my post-op pathology report.

Side effects from the radiation were fairly minor -- hemorrhoids and fatigue mostly -- and the radiation may have played a role in my poor recovery of continence and erectile function after surgery. The last few weeks I seem to be less comfortable and leakier than I was a few months ago and I suspect I may have a bit of radiation cystitis. I am scheduled to talk to my uro in January about a possible sling but if my continence continues to deteriorate I may see if I can sneak in a bit early. He likes to wait at least a year after radiation before starting a sling workup so that radiation effects don't affect the analysis too much.

Considering that I had a large aggressive cancer and I have been undetectable, essentially, since surgery, I am OK with my results but I am looking to see if I can't get back some of what I lost in surgery and ART radiation.

Gallilio,
I hope we do hear from those guys. For some it's been too long.

Mozart is around and doing well. He is a friend on Facebook but I don't think he visits here much anymore.

Tony

Hi Galileo,

It is nice to see that some long term ART/SRT fellows
are doing well several years post-treatment. Let us see if the names in your list, Pasayten, Norskie, Pelahatchie, Bootheel, Hawkfan75, dsmc, Miltdav, Mozart250, manifest themselves.

All the best,

Joe.

Near 4 years post SRT and doing very well...

DaVinci April 2007, G6 T2c Nx Mx - 2 focal points at margin
November 2009, PSA had crept back up to 0.13 after 2 1/2 years. Consult indicated BCR.
Jan 2010 had IMRT SRT - 32 sessions x 2 gys/64 gys total.
June 2010 3 mth PSA post SRT was 0.02.
Jan 2011 PSA 0.01
Aug 2011 PSA 0.01
Aug 2012 PSA 0.01
Nov 2013 PSA <0.02 (different lab, but still undetectable)

No significant side effects from the SRT process except for some infrequent very mild proctitus which has essentially disappeared after 3 1/2 years.

pasayten

The beginning of the month was 7 years since my RRP, had ART 6 1/2 years ago. For years my PSA was 0.02, switched labs this year now PSA is less than 0.01. Was progressing nicely concerning ED and incontinence but the radiation caused a regression and since then one pad a day and a semi-limp noodle.

North foot
I'm confused. Why did you elect SRT with such a low PSA?
Bob

I had SRT in mid-2010 followed by 12 month ADT3. Came of ADT in June of 2011. In remission for 30 months now, PSA > .01.

Another < 0.1