Treated 2004 • Posted 2005
“I went to the website and began reading the testimonials. These were not brief statements, but pages long descriptions of people’s experiences at Loma Linda and heartfelt expressions of their gratitude for having discovered a treatment that allowed them to be treated successfully without destroying the quality of their lives.”
When I received a call from my urologist telling me that I had prostate cancer, I was stunned. I had several TURPs in 1969, which virtually removed my prostate gland from the inside out. My PSA readings were so low (.1 to .3) that my primary care physician had stopped doing rectal exams altogether. My urologist did the first rectal exam in five years and found a nodule. My PSA reading was 1.19. He said, “We’ll check it in six months.” I said, “Let’s do the biopsy now.” I was sure that the biopsy would be negative, but I didn’t want to worry about it for six months.
After the biopsy, I had my PSA rechecked. It came out 0.1 as it had been for years. How could I possibly have prostate cancer with a PSA so low? I had the pathologist send my slides back to the Mayo Clinic for confirmation. They verified the diagnosis and the Gleason score of 3+3=6. I asked my urologist what I should do about it. He said, “Surgery is clearly the best choice. It’s the gold standard, and we should do it within the next six weeks.”
While I was waiting for my appointment, I began researching the disease. A doctor friend sent me a medical update audio disk on prostate cancer that he had recently received. I listened to it several times. I spent hours on the Internet exploring various treatments. I made an appointment with a radiation oncologist to hear about the radiation alternatives from someone who favored that approach. I visited with my cousin who is suffering from metastatic cancer of the prostate. His disease had spread to the vertebra in his back. He takes large doses of narcotics every day to control the pain. One of the choices for dealing with prostate cancer is “watchful waiting.” I scratched that method off my list immediately.
I had heard some horror stories about the side effects of prostate surgery: incontinence that required diapers, complete and permanent impotence. I wondered how often such side effects followed surgery. Was radiation any better? By the time I went in for my consultation with the urologist, I had learned a lot. I made a list of my alternatives: 1. Surgery (radical prostatectomy) 2. Conventional Radiation Therapy, 3. Brachytherapy, 4. Cryotherapy and, 5. Proton Therapy
I knew the least about Proton Therapy. It was not mentioned in the audio prostate cancer update I had been listening to. I checked the American Cancer Society website and downloaded their Prostate Cancer Treatment Guidelines. The information was extensive, with charts and diagrams, even a glossary of terms relating to prostate cancer. I did a word search for the entire document. Proton Therapy was not even mentioned in the glossary. These Guidelines are supposed to be updated every year. Why would they not even mention Loma Linda and Proton Therapy?
Somewhere in my searching I came upon an Internet address for the Brotherhood of the Balloon (www.protonbob.com). I went to the website and began reading the testimonials. These were not brief statements, but pages long descriptions of people’s experiences at Loma Linda and heartfelt expressions of their gratitude for having discovered a treatment that allowed them to be treated successfully without destroying the quality of their lives.
I searched the Internet for similar testimonials extolling the virtues of surgical removal of the prostate, conventional radiation and other methods of treatment. I found a few for brachytherapy, seed implants, and homeopathic cures, but none for surgical removal or conventional radiation. The testimonials I found were for the most part short and perfunctory. None were as enthusiastic as the ones from Proton Therapy patients.
I met again with the surgeon, and the radiation oncologist. We discussed the treatment options and they both urged me to accept the treatments they could perform. Neither seemed interested in Proton Therapy. They implied that it was experimental and the results not well documented. The radiation doctor said: “If Proton Therapy was as good as they represent it to be, treatment facilities would be springing up all over the country.” He suggested that Loma Linda and perhaps one other facility were the only treatment centers in the USA. It soon became obvious to me that the professionals I was consulting knew little about Proton Therapy. If I was going to seriously consider it as viable treatment for my prostate cancer, I was on my own.
I contacted Loma Linda. They were helpful, informative, and professional in every way. I learned there are many proton treatment facilities throughout the world, that well over 30,000 patients had been treated, and that the LLUMC Proton Facility had been operating for nearly 15 years. This was not an experimental treatment. It was well established and well documented. A 10-year study showed a disease-free survival rate equal to or better than surgery or conventional radiation treatments and with fewer side effects.
I went to Loma Linda for two and a half months and thoroughly enjoyed the whole experience. The treatments took only a few minutes each day, Monday through Friday. I played golf and tennis often. My wife and I enjoyed getting to know Southern California during the long weekends. But the best part of the experience was associating with the other patients and their wives.
The men who choose Proton Therapy are a little different from the average patients. Most prostate cancer patients go through the entire treatment experience essentially alone. They have a serious problem with an organ in the most private part of their body; the urologist suggests surgery and urges that it be done quickly. He quotes very positive statistics and they decide to get it over with. If the side effects are more distressing than they had been led to expect, they assume that they were just unlucky. They suffer in silence and take their lumps like the stoic men they are. The community never hears their complaints because they just don’t want to talk about them.
The men who choose Proton Therapy seem to be individualists who simply refuse to accept the recommended treatment without asking questions. Each one has had to tell a highly trained physician, “No!” Then they find a different option on their own, and have had to exercise the determination to follow that course through, and accept the consequences. Such a shared experience makes men brothers.
Lee Cantwell may be contacted at firstname.lastname@example.org.