Hi all. I'm new to this forum. Diagnosed in Feb 2006 (but suspected for years), Da Vinci surgery April 2006. Gleason 3+4. PSA 8.1 before surgery. Negative surgical margins. Staging T2C (palpable node on one side, cancer found on both sides). Capsular penetration. First PSA after surgery <0.1, second PSA 0.2. I'm a tad nervous.
IF my PSA goes the wrong way and IF (a very big "if", I think) it looks like it's still localized, I guess I'd be looking at radiation. (However, localized PCa would be kind of rare if you have biochemical failure within 2 years of surgery--more likely to be systemic according to plenty I've read). But I'm looking at all potential avenues here.
An acquaintance in a similiar situation (PSA became detectable and rose steadily after surgery) has gone to Loma Linda for proton therapy. While he does not know if the treatments, now completed, have been beneficial, he reports that he had ZERO side effects.
What I'm wondering is this:
After prostatectomy, there's no organ to target, but rather a general area where it used to be. And parts of you move into that area. Doesn't that negate the main benefits of protons? A.) Why worry so much about focus when you have to hit a general area? B.) Wouldn't the parts of you (rectum and bladder) get zapped as part of the therapy? And if those things are true (see the OncoLink snippet below) how did my buddy get through the treatments so easily?
..in a man who has already had a radical prostatectomy and now has a recurrence, the entire area where the prostate gland was located needs to be treated. Because the bladder and rectum fall into the hole where the prostate gland was previously located, there is no way to spare these structures from radiation by using protons. Thus in this circumstance, there is no benefit to protons over conventional radiation treatment.
While proton therapy might be physically easier, it would be a hardship financially and personally--even if I got the insurance company to pay, which looks like it would be a battle.
So I would like to arm myself now with lots of information. I thank you in advance for anything you can provide.
My understanding also is that rising PSA within the first year after surgery is usually indicative of cancer cells in places distant from the prostate area.
Research indicates a low success rate for radiation in these circumstances, which is why hormone treatment is often used.
Proton is well targeted but I understand that Loma Linda sometimes uses conventional radiation treatment in addition to proton. The "protonbob" website has stories from over 100 men who have been there. Bob and some of them will be able to provide you more details. It does seem that few of them have side issues often associated with radiation.
In relation to hormone treatment, the website www.yananow.net has information from lots of men who have undertaken various treatments. Look under mentors experiences. A friend has his story there. He's used hormone treatment for the past year and has tolerated it very well by improving his lifestyle and staying active.
I always suggest reading the book by Lee Nelson "Prostate Cancer Treatment and Cure" which is very comprehensive, and deals with these issues in detail.