First of all, congratulations to Judy Berman on her recent article on prostate cancer ("My prostate cancer month," Sept. 16). She is correct that everybody recognizes the pink ribbons and what they represent, but few know the blue ribbon sign. As a prostate cancer survivor, I really appreciate highlighting prostate cancer awareness.
Prostate cancer is a disease that should kill very few men. PSA testing is critical, and there are alternatives to surgery. Please allow me to put this disease and treatment in a different light by sharing my experience.
The annual PSA tests that my doctor insisted on provided the early warning which was then confirmed in biopsy. I was not interested in "watchful waiting" to see if something else would kill me first, so I began the search for the best treatment choice. Most prostate cancers are diagnosed by urologist surgeons who enthusiastically recommend removal as the only sure cure. I had too many friends and a brother-in-law who took that immediate choice, so I talked candidly with them. I discovered there are at least two inconvenient truths about surgery — perhaps half of those men never regained sexual function and secondly, that surgery does nothing to treat the "margins" just outside the gland and many men have that issue and then face radiation, hormone suppression, or chemotherapy with debilitating side effects. So I rejected surgery.
Another option is brachytherapy where radioactive seeds are implanted in the prostate. Simplicity is the appeal as this is done on an outpatient basis. It can be very effective, but I discovered too many of these radioactive seeds accidentally migrate to or burn the bladder or colon. It also does not treat the margins. I know someone who took this approach and he is now incontinent and needs to wear an adult diaper. So I rejected brachytherapy.
Photon (X-ray) radiation is another choice, typically delivered by a technique known as IMRT. One of my business partners chose IMRT and although it appears to have cured him, he was exhausted by the five weekly radiation treatments over six weeks. Weekends were off, and he felt much better by Monday morning, but then he went downhill again during the week. So I was not enthusiastic about standard X-ray IMRT radiation.
I remembered a casual friend some years before had gone to California for a different kind of treatment, so I called him. Thank God! He had done proton beam radiation therapy at Loma Linda, a much more targeted radiation with significantly less collateral damage as the beam releases all its energy at the prostate and does not impact the rest of the body or travel out the other side. For a more detailed explanation see The National Association for Proton Therapy. It is every bit as effective as X-ray, perhaps more so, but without the debilitating exhaustion and collateral tissue damage. It also treats the "margins" so any microscopic cancer cells are killed along with cancer cells in the prostate. It is growing in popularity as word spreads, and now there are 11 proton centers in the U.S. and more under development.
I chose the University of Florida Proton Therapy Institute (UFPTI) in Jacksonville and began my treatments in March 2010 at age 68. I felt terrific the whole six weeks, rode my bike with the North Florida Bicycle Club, played golf twice a week, worked out at the local YMCA, and my wife and I had a very active social life along with other patients and their wives. We called it our "radiation vacation." Most importantly, I am cured and have no adverse side effects like incontinence or impotence. Since I still have a prostate, I still have a PSA score — it declines steadily during and after treatment and mine has stabilized at 0.1 and my testosterone scores are normal for my age.
I am so enthusiastic and appreciative of UFPTI and proton therapy that I volunteer to talk to men going through a decision process like I did nearly four years ago. I get emails and phone calls at least weekly and am thrilled to help newly-diagnosed men who are struggling emotionally with the news and decision making. One of the biggest obstacles is lack of knowledge — both patients and more importantly urologists with a surgical bias. I pledged to help counter that obstacle.
J. Richard Uhlig