I hope HW, and my home turf, cancerforums.net, become places where salvage and adjuvant guys report back over long periods of time. I have yet to hear the story of someone who had SRT 5 or more years ago and is still free from PSA progression. Statistically, they should be out there. I'm guessing that in the last 5 years, SRT has become much more widespread, since guys who were previously thought to have systemic disease (because of PSA becoming detectable quickly after surgery, or a rapid PSADT) are now more likely to get SRT, since
Stephenson,
Trock, and others showed that it could help a portion of even those who had an adverse prognostic factor like high Gleason or rapid doubling time. (In fact, Trock shows that it may be those with fast doubling times that stand to gain the most from SRT).
I'm over 3 years out now. Last year I think I saw a guy pop up on the Usenet group for prostate cancer support who had had SRT 4 years before and was still doing fine
- PSA still undetectable. But that's it.
Besides the fact that SRT wasn't as popular 5 years ago, some of the silence has to do with age, I guess. I'm one of the younger ones. I guess if you had surgery at 69, and you had SRT at 75, then died of a heart attack at 83, I guess it's hard for you access the Internet from the Other Side. Then there are guys who don't think there's anything significant about
the radiation - just assume it mopped up the leftovers, assume they're cured, and don't look back or talk about
their experience online. There are people in my family who are 100% certain I've been cured (mostly for religious reasons) . They would be totally shocked
if my numbers went south. (I wouldn't be).
There are plenty of guys, I assume, who had their PSA rise after SRT and have been controlling their cancer long-term with ADT. And there are the ones who go from surgery to SRT to ADT to RIP. All added together, it means there haven't been a whole lot of guys saying "I had salvage radiation 10 years ago and it took care of my PCa!"
Lots and lots of prostate cancer survivors, including those who had SRT, are of my dad's generation and are simply much less likely to use the Internet.
I think the large number of guys here who are either getting salvage/adjuvant or who recently had it, represent the rising popularity of the treatments, along with the fact that discussion groups are weighted towards the newly diagnosed and those who have had some setbacks. In other words, those who have a successful primary treatment are not very likely to stick around and talk about
it for years on end. Unlike me...
I hope this forum becomes a place of hope for salvage radiation patients, where we can report back long term successes. Of course, I hope I'm in that number, when the SRT survivors come marching in. I've read stories of salvage guys on HealingWell from a few years ago who stopped coming here. I hope that means all is well.
So, SRT brethren, my southern upbringing and the day of the week lead me to plead with each and every one of you...
can I get a witness? G.