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.

Cancer and "Man's Search for Meaning"

I guess I'm not the first to draw a connection between Frankl's work and the lives of cancer patients.  Robert Young, creator of the Phoenix5 prostate cancer site, in 2001:

Viktor Frankl survived four Nazi concentration camps and was witness to men who had no reason to live, who felt they would be better off dead and yet he counseled them to live in the worst conditions and situations that any people have possibly ever endured.

Substitute "cancer" for "concentration camp" and "patient" for "prisoner" and - in my opinion - his insights apply to our (collective) situation and they can offer inspiration.

http://www.phoenix5.org/books/Frankl/FranklRelevance.html 

The Value of Believing in Others

This is a little off-topic, but perhaps you can see how it fits into the life of a cancer patient.

Holocaust survivor and author of "Man's Search for Meaning", Viktor Frankl:

Hernia fixed

Had it done the "open" way (non-lap) in the outpatient clinic yesterday morning, under general anesthesia. Some pain and discomfort.  Couldn't get comfortable last night without pain med (roxicet) but I'm trying to keep those to a minimum because of the nausea when they wear off.  I rented "The Hangover" on Blu-Ray, but I'm afraid to watch it until I heal up some more!  Get to remove the big Band-Aid tomorrow and see the handiwork.  Appetite is coming back today.
Plan to get back to playing online chess soon on Gameknot.

navel gazing

I've noticed, since my surgery, that my navel didn't quite look normal.  Over time, it's gotten much bigger.  I showed my primary care doc, who said casually, "Oh, that hernia?  Here's a card for a surgeon."

So next month, I'll get that patched up.  Turns out to be an "incisional" hernia,  meaning I wouldn't have had it without the surgery.  It's at the bottom of the main incision where the prostate was removed.
In other news, I'm trying to lose weight (which should help with the hernia, too) and get healthy.  I just bought a Gary Fisher Tiburon bike.  When I'm totally healed from surgery I plan to start the P90X program with my son.  I also plan to follow David's lead and learn how to play disc golf, because I live right on a course.

I'm also now on Pravastatin for high cholesterol.  Cholesterol, blood pressure, prostate cancer, hernia, presbyopia ...yep, it's officially middle age.

But life overall is good.  Has anyone noticed that television has gotten a lot better over the past decade?  When I was a kid, "The Beverly Hillbillies" was prime-time fare.  Then it was an endless, boring parade of car-chase detective shows in the 70's, and lame comedy in the early 80's.   Now we've got 30 Rock,  The Office, Modern Family, and Big Bang Theory for comedies; and great dramas like House.  But the best thing to ever be put on TV (for me) is definitely ABC's Lost.    All of this TV cuts into my reading time, but I am managing to squeeze in some Bernard Cornwell.


My next PSA test is in July.  Until then, I'm going to have my belly button turned back into an "innie", heal up, get healthier, and enjoy life. 

Namaste.

PSA and Me

I would like to speak about my individual case for a moment, rather than statistics.

I was not screened - which is what the main uproar is about - but rather tested after coming to my primary care doc with a complaint. There is a difference.

The complaint was increased night time urination. It was almost certainly a result of my tendency to hypochondria along with a little BPH.

So PSA testing resulted in me going to see a urologist years before I would have otherwise. He immediately did a biopsy, and did not try antibiotics, or watch my PSA velocity (this is a main complaint of the PSA pioneers Ablin and Stamey as I understand it - going straight to biopsy after one PSA).

Eventually, after several years, lots of PSA tests, and three biopsies, cancer was found. It was found by the trend, though--a sudden jump after a period where it was low--along with a positive DRE. It appears, based on Gleason and doubling time, that it was not indolent. It would have, and may still, kill me before other causes like my high cholesterol or blood pressure.

Did mass PSA screening play a role in saving me? No. It most definitely did not, because I did not get screened and I was years away from that. Testing may have played a role - and if you read PSA discoverer Ablin's comments (New York Times, March 10, 2010)carefully, he does not dispute that there is a role for testing, especially in high risk cases, nor does he dispute the value of PSA in post-treatment monitoring.

Again, PSA as a diagnostic tool *may* have helped me. Maybe I've been cured of a disease that would have slipped by, otherwise, and killed me early, a la Fogelberg or Zappa. But here's the thing - I don't know. It's possible that I have gone through surgery and radiation and in spite of my good results so far, my PSA will come zooming back and in the end, the result will be the same, maybe even the same timeline.

Only a lot of time will tell. I read, over and over again, on multiple forums, from men who have just been treated, that PSA screening has saved them. In some cases, they weren't really screened, but tested after presenting with a complaint. And in a lot of cases, they are saying that PSA testing saved them when it's too early to know that with any certainty. When Stamey spoke at the meeting I went to, there was a lot of anger from the men in the room, because what he was saying was essentially that although everyone hoped they had been saved by PSA, given enough time, a significant portion would find that wasn't the case, or that some of them had been "saved" from a disease that would have never threatened them.

Again, I'm not saying that I agree or disagree with the PSA pioneers, and I hope that PSA played a role in saving my life. The bottom line is, however, that I don't know.

Has salvage radiation worked for you?

Did you have salvage radiation for a rising PSA, post-prostatectomy, years ago and are still free from progression?

I have for the past couple of years, scoured the Internet in hopes of coming across individuals who, after having salvage radiation after prostatectomy, have had no signs of cancer (i.e. they are progression-free) for several years.

I have found people who had salvage radiation a couple of years ago, and on a Google prostate cancer group, I think I read the story of someone who was 4 years out from SRT, with PSA still undetectable.

I am following the cases of several guys on HealingWell.com who are having SRT now, or who recently finished (within the last 24 months).

I know from stats that there must be some folks out there who had their PSA rise after surgery, then had radiation, and who are still free from PSA progression 5 or more years later. Are you one of those people, or do you know one?

If so, add a comment here. I'd like to hear your story, and so would visitors to the blog.

I do moderate the comments, so you won't see your message until I have a chance to review it. Keeping the spammers at bay, you know.