Resources

I know a lot of you come here because you or someone you know has prostate cancer that has recurred (or is very likely to recur) after surgery, and you want to know the odds of success of radiation (called "salvage" if it is done after your PSA starts to rise).  Many of you are asking specifically for the Stephenson nomogram, the major tool that predicts success.

Another question many of you have is in regards to the side effects of salvage radiation.

Many of you get here because you're under 50, or about 50, and are surprised to have been diagnosed with prostate cancer.

I know these things because I can see the keywords in Google that bring people here.

So I thought I'd write a post that directly addresses the possible reason you're here.

First, if you are looking for the Stephenson nomogram, it is the basis of the the Salvage Radiation Therapy nomogram on the Memorial Sloan Kettering website here:
http://www.mskcc.org/applications/nomograms/prostate/SalvageRadiationTherapy.aspx
Put in your Gleason, PSA, and other items from your medical history and get an idea of the odds of successful salvage.

Next, if you want to know the side effects, I will tell you that in the case of IMRT, the type of radiation technology used on me, the side effects when used for salvage are usually mild and temporary.  If you are continent before salvage radiation, you'll probably still be just as continent afterwards. If you have erectile dysfunction from your surgery, IMRT might worsen it, and the worsening could happen over a couple of years following the end of radiation. You might have bowel irritation.  Most of the time, this is treatable and temporary, but sometimes it is chronic and hard to cure.  Most of the time, men don't have serious, quality-of-life side effects from salvage radiation.  For more on that, see: Peterson JL, Buskirk SJ, Heckman MG, Crook JE, Ko SJ, Wehle MJ, Igel TC, Prussak KA, Pisansky TM. Late toxicity after postprostatectomy salvage radiation therapy. Radiother Oncol. 2009 Nov;93(2):203-6. Epub 2009 Sep 18. PubMed PMID: 19766337.

If you're here because you're 50 or under, well, there are actually quite a few of us these days! Statistically we're an anomaly, but if you hang out on prostate discussion forums, you'll run into other youngsters.  Which leads me to my last resource..

Discussion groups

By far the most active prostate cancer discussion forum I know of is the one on HealingWell.com:
http://www.healingwell.com/community/default.aspx?f=35

The next most-active prostate cancer discussion is on CancerForums.net:
http://cancerforums.net/forum-5.html

and there is also a group I read on WebMD, although it is very quiet now after some major changes to the discussion forums (now called "exchanges") that hamper communication, IMHO:
http://exchanges.webmd.com/prostate-cancer-exchange

I am aware that there are other discussions, like the Usenet group, and the one on the US Too website, but none are as busy and populous as the one on HealingWell.


Best wishes.