Treated 2000 • Posted 2001
“The big deciding factor for me was a much better quality of life outcome for treatment by Protons at Loma Linda.”
I was 59 years of age when I was diagnosed with prostate cancer in June 2000. My cancer was discovered as a result of a routine PSA test. My PSA was 4.2, so my primary care doctor referred me to a urologist. The urologist examined me and said that there was no physical evidence of cancer but recommended that I have a biopsy. The biopsy showed that I did have prostate cancer with a Gleason of 7 (3+4). He recommended surgery and said that the only other option was external radiation.
I had been exploring prostate cancer treatment on the Internet from the time that my primary care doctor had referred me to the urologist. My wife had used the telephone to call several medical centers that treated cancer. She was the one that discovered Proton treatment at Loma Linda. I started attending the prostate cancer support group meetings at Loma Linda as well as other support group meetings in Southern California. I immediately noticed a big difference in the mood at the meetings. At the other support group meetings the mood was very somber and the focus was on dealing with the negative side effects of their treatment (surgery or conventional radiation). The side effects that were most prevalent and that concerned me the most were incontinence and impotence. My urologist had explained that these side effects were possible. I then asked him about nerve sparing surgery that I had read could lessen the chance of impotence. He said that it was a possibility but was not always successful. He said that the nerve bundle was attached to the prostate and that it's removal was "like peeling off wallpaper". At that moment I decided that surgery was not an option for me.
The mood at the Proton support meetings was always very positive and upbeat. The reports from the current patients as well as former patients were always good. They were talking about minimal side effects and focused more on the activities (golf, hiking, mountain climbing, sight seeing, etc,) that they were involved in while undergoing treatment.
If possible, I suggest that you attend a support group meeting at Loma Linda and also other groups before you make your decision on a course of treatment. I believe you will see a big difference in the tone of the meetings.
After several weeks of research, I decided that the long-term outcome of treatment by Protons was as good, if not better than other treatments. The big deciding factor for me was a much better quality of life outcome for treatment by Protons at Loma Linda.
I had a difficult time in persuading my insurance company to authorize the Proton treatment. They denied my request and also my appeal. I then requested a grievance meeting at their Southern California headquarters. This process can be very intimidating for the person filing the grievance. They give you only ten minutes (I took 20 minutes) to present your case. The meeting is held in a fancy conference room with a large table where you sit with about 12-15 people. These people included vice presidents, doctors, and nurses and contract managers. My presentation focused on educating them on why Proton treatment was better for me. At the end of the meeting they said that they would provide their decision to me within two weeks. At the end of two weeks they notified me that they were sending the case to an outside consultant for review. This appeals process had already taken several months and I had not started receiving any treatment for my cancer. I believed that they were just sending it for review before they told me “No” again. So I decided to pay for the treatment myself. The treatment is very expensive but I felt so strongly about it being the best for me that I decided to pay for it myself. I went ahead and made a payment to Loma Linda and scheduled my start date. Just before I started treatment my insurance company sent me a letter saying that they had reversed their decision to deny treatment. They ended up paying 100% for the Proton treatment. Insurance companies often make it very difficult to get the treatment that you need. You really have to be persistent and stand up for your rights.
I began my Proton treatment in early November 2000 and completed it on December 29, 2000. I had 38 proton treatments. At the time of my treatment I was a sales person for Lucent Technologies working out of an office in my home. I live in Claremont, California, which is about 30 miles from Loma Linda. I scheduled all of my treatments for late afternoon so that I could continue working during my treatment. I had no side effects from the treatment and did not miss a day of work for the entire time.
I am now 16 months past the end of my treatment and am feeling great with no side effects. My PSA readings have continued to decline. “My PSA readings: Pre-Treatment: 4.2, Month four: 2.8, Month ten: 1.8, Month sixteen: 1.0.”
I hope that this information is helpful to you in making your decision about your treatment. Please contact me if you wish to discuss this.
I wish you the best with whatever treatment you select.
Bob Powell - Claremont, California
Post Script: In November 2002, Bob’s PSA had dropped to 0.6