Join Date: Nov 2007
Location: Annandale, VA, USA
Re: Looking for Physician (s)
Welcome to the Board!
I did not know what a "J Pouch" was, despite paying attention to prostate cancer for over eleven years now. I saw you had no responses yet, so I thought I'd take a shot at this by doing what I usually do when I'm ignorant of a subject, I searched the wondrous tool paid for by our taxes (and our gift to the world ) that is sponsored by the National Institutes of Health unit known as the National Library of Medicine: PubMed (for Public Medicine). PubMed is at www.pubmed.gov. I'll comment on your post in green.
I used this simple search string (without the quotation marks): " prostate cancer AND J pouch ", and the result was nine hits. You can read a brief description of each study (the "abstract"), if there is one (usually the case) by clicking on the blue hypertext title. Sometimes PubMed will provide a link to a free copy of the entire paper.
Originally Posted by jerob
I have prostate cancer - Gleason 7; I also have an internal "J Pouch," which precludes any type of radiation treatment. I'm looking for a surgeon that has experience with prostate removal (open surgery - or other) with patients having an internal "J Pouch."
Once I realized what "J pouch" was, I was wondering why seeds, in contrast to external beam radiation, might not work. Here is the citation for one paper you might find particularly interesting, as it contradicts what you have been advised about radiation.
Urology. 2009 Feb;73(2):369-73. Epub 2008 Aug 15.
Prostate brachytherapy after ileal pouch-anal anastomosis reconstruction.
Williamson R, Smaldone MC, Gibbons EP, Smith RP, Beriwal S, Benoit RM.
Department of Urology, University of Pittsburgh, School of Medicine, Pittsburgh, Pennsylvania 15213, USA.
It's obvious that the researchers also had doubts whether seeds would work well in such cases, but they found that they did. It's not surprising that their research has not yet penetrated the practice of the doctor you consulted. It often takes many years for advances to overcome conventional wisdom.
By checking the institutions of the authors who published in the PubMed list, you may get leads to surgeons who are savvy about handling the J pouch issue.
Another alternative is advanced hormonal therapy. My own sole therapy for more than eleven years now is intermittent triple androgen deprivation therapy (IADT3) with finasteride continued in support during the off-therapy vacation periods. It's looking like many patients with less challenging cases can do very well with just one round of such therapy lasting, usually, from about thirteen to about seventeen months. There are side effects for most of us, but the great thing is that they disappear for almost all of us within a few months of stopping the two heavier duty drugs. Moreover, during full therapy, most of them can be mostly countered so that they are prevented or minimized.
The downside is that this therapy is rarely curative. It offers long-term control, often for many years (despite myth to the contrary), with no or minimal long-term side effects for most of us. The patient can later elect a therapy giving a shot at a cure if he so desires, with typically excellent results for those who have gone that route. In the years the patient is relying on one-time, maintained, or intermittent therapy with maintenance, other therapies are almost certain to improve, and proof of earlier improvements is highly likely to have been published.
Here are some excellent books that can help orient you to the choices available:
"A Primer on Prostate Cancer -- The Empowered Patient's Guide," Dr. Stephen B. Strum, MD, and Donna Pogliano, 2nd ed. 2005 - great for thorough, empowering orientation and best practices
"Invasion of the Prostate Snatchers," Ralph Blum and Dr. Mark Scholz, MD, outstanding on orientation, patient's perspective, and current best practices
"Beating Prostate Cancer: Hormonal Therapy & Diet," Dr. Charles "Snuffy" Myers, about 2005, may have been revised, outstanding on reasons for optimism, decision strategy, hormonal therapy, and diet, nutrition and supplements
"Surviving Prostate Cancer without Surgery - the New Gold Standard Treatment that Can Save Your Life and Lifestyle," Dr. Michael Dattoli, MD, Jennifer Cash, and Don Kaltenbach, 2005 or 2006, outstanding on radiation for prostate cancer, especially brachytherapy with or without IMRT
Good luck in finding something that works well for your particular challenge.