Treated 1999 • Posted 2000 • Updated 2010 & 2015 & 2016
Charlie had proton therapy in 1999 after a failed prostatectomy. "The proton beam did what surgery couldn't do. My PSA has been undetectable since 1999 when I left Loma Linda."
In 1992, I was living in New York. During my annual check up, my PSA was 12. My doctor thought it was a mistake, so I had another PSA, which was 13. He then suggested a urologist, and after the biopsy, I was diagnosed with prostate cancer. Of course, my urologist wanted to operate. I went for a second and third opinion to Columbia P & S and Johns Hopkins, respectively. I wasn’t too smart since these opinions were also from surgeons, who of course, suggested surgery. Duh. Since it was 3 – 0 in favor of surgery, I had a prostatechtomy.
After the operation and reading the pathology report, my urologist said that, “no further treatment would be necessary.” He labeled me cured. Unfortunately, he was wrong. The good news was that I was still potent and I wasn’t incontinent. In fact, I was the opposite of incontinent; I couldn’t pee because my urethra was closed due to scar tissue. For several months, every few weeks I had to have my urethra dilated so I could pee. That was the most painful experience in my life. I remember my urologist saying that I had the “good” side effect, since incontinence would be a much bigger problem. Good for him, VERY bad for me. I don’t know what percentage of prostatechtomy patients get this side effect. It’s probably rare, but the urologists certainly don’t tell you about it. To say that going through this urethra constriction is painful is the biggest understatement that I can think of.
During the next 7 years, my PSA went from 0.2 (right after the surgery) to a 2.6. That’s pretty high for someone without a prostate. In about 1996, when my PSA was well over 1.0, heading for 2, I knew I had to do something. I didn’t want conventional radiation or hormonal treatment, and I really had not heard about the seeds yet. I tried shark cartilage, cat’s paw, and many other homeopathic remedies. None of them worked except the sellers of the shark cartilage made a lot of money.
I remember in Jan. ’97 when it appeared that the shark cartilage was not working, I felt terrible. My PSA was about 1.7 at that time (I think). My first grandchild was due in June ’97, and I wasn’t sure I was going to make it. I finally spoke with a radiologist in Tucson (where I moved to in 1994) for treatment, but just couldn’t bring myself to having that type of conventional radiation treatment. Thank goodness prostate cancer is a “slow growing cancer.” I continued to do nothing until I found out about Loma Linda from one of the guys in my Support Group. As they say, the rest is history. I got the video and read as much as I could about this treatment. I’m extremely grateful for finding out about Loma Linda, and I try to do whatever I can to help others, in my Support group and elsewhere. I had a prostascint scan, which showed “disease” probably confined to just the prostate bed. I learned that these scans are more of an art than a science. Since that was the case, I wanted to go to Loma Linda.
I’m sure we all have our stories about urologists and radiologists “bad mouthing” the proton beam treatment. I remember my urologist, actually my former urologist, called the Loma Linda operation a “scam, being run by charlatans”.
I had 37 proton treatments - through the entire prostate bed, and a little extra margin around the bed. I had no other radiation. I’m still potent and have had no incontinence. I have had no side effects except for a very temporary irritation during bowel movements for about 1 month near the end of treatment. I consider myself very lucky. It’s been over 3 years for me, and my PSA is still “undetectable”.
It was truly a great experience. Dr. Rossi, the technicians, the social workers, etc. were absolutely fabulous. I worked out or played racquetball every day right after my treatment. I enjoyed the dinners together, a few outings, even went on a glider for the only time in my life. For me, it was like being on vacation. I’m still in touch with a few of my “classmates.”
I always drank a lot of water before my treatment, and I suppose that helped to make the treatment easy to handle.
I’m on the Loma Linda referral list, and I speak to approximately 1 or 2 callers per week. I’m a real “shill.” I’m currently very active in my Prostate Support group (in Tucson), and I even started a Support group in New York at the hospital where and when I had my operation. I’ve probably spoken with over 200 guys that have had prostate cancer, and without question, as long as the cancer looks like it’s confined to the area around the prostate bed, the Proton Beam is the answer.
I think we are all very fortunate to have experienced this treatment. I know that cancer can kill, but since it hasn’t (and probably won’t) killed me, although this may sound like Pollyanna, I truly believe that the experience of having cancer has had a very positive impact on my life. It certainly helps to reorganize life’s priorities.
Eleven years after salvage proton treatment, Charlie’s PSA is undetectable and he says he “can’t say enough” about his experience at LLUMC. He is active in a prostate cancer support group in Tucson which is affiliated with the University of Arizona. When the original group leader dropped out, Charlie and three others began to coordinate the group meetings and arrange speaker presentations. Within the group, there are men who have had all types of treatment including seeds, surgery, radiation, and cryo. Charlie speaks to the group about the benefits of proton treatment and urges the newly diagnosed to consider this option.
Charlie is on the BOB Salvage Proton Patient Reference List and gives generously of his time to speak with men who have had failed surgery about his experience of proton therapy.
Charlie still travels occasionally and stays physically active. He enjoys hiking and bike trips in the US and in Europe. He also enjoys hanging out with friends and spending time with his kids and his two grandchildren. Charlie belongs to a book club and enjoys reading. Just a year ago, Charlie wrote a book titled, “Grow Your Stock Exchange: Futures & Options.” He often gives the book to CEOs and government regulators and uses it as a marketing tool.
Charlie just turned 73 and is truly enjoying life. This month, he will celebrate his 45th wedding anniversary. He says he “enjoys every beautiful day” in Tucson.
Update: December 2015
Background: I had a prostatechtomy in 1992. My PSA kept rising, and went to Loma Linda in 1999. Since then my PSA has been "undetectable." I don't even think about it.
After the prostetatomy, I would leak when I laughed, sneezed, drank too much, or coughed. The proton beam treatment did not make that worse. I hardly ever wore a pad. I'd say that for the last year, since mid 2014, which is 15 years after Loma Linda, the leaking got worse. Now, when I go to a party, movie, etc., I wear a pad. However, I chalk that up to "older age."
Update: July 2016
I'm doing fine at 79 years old. My PSA has been undetectable since I left Loma Linda in 1999.
I still enjoy being on the BOB former patient reference list and talking to newly diagnosed men. I'm glad to help them in their search for the appropriate treatment.
I'm still actively seeking consulting work, establishing futures and options on stock exchanges in developing countries.
Read Charlie's book: "