Treated 2002 · Posted 2003 · Updated 2015
“The most important sentence in this letter was: “ WITH RELATIVELY FEW SIDE EFFECTS.” We made the decision to go to Loma Linda.”
My Prostate Cancer Story: As every year in January for the past five or six years I stopped, on my way home from work, by the Northwest Prostate Institute in Seattle, for my yearly PSA test. I was surprised, when I received a letter from the Institute with the information that my PSA was 4.9 and with a suggestion, to make an appointment with my Primary Physician to get my Prostate checked out. This letter started a series of events that occupied me and my dear wife Hilde for the rest of this year.
I made an appointment with my Primary Physician of the Group Health Cooperative. A follow-up of the PSA test in February showed an elevated PSA level of 8.2 and I was referred to see the Urologist during this appointment.
My Urologist could not feel any swelling of the prostate, but because of the elevated PSA of 8.2 he suggested a biopsy, which reveled the presence of cancer, identified as stage T1c, Gleason 3+3=6, PSA 8.2.
In a meeting with my Urologist, he explained to me the options for treatment of Prostate Cancer. One option doing nothing and follow a “watch and wait” philosophy. As a surgeon himself he would perform a nerve sparing prostatectomy, which is commonly considered the gold standard for Prostate Cancer treatment. But because of the advanced radiation technologies, he suggested I might consider radiation, because he thought that surgery could not extend my life over what radiation could accomplish.
As scary as it is to learn that I had Cancer, it was comforting to hear from my Urologist, that there are many ways to heal Prostate Cancer and to survive the disease, but all methods of healing may cause unpleasant side effects.
So, the search for the right healing therapy was on. When I talked with my wife Hilde about the options, we decided to avoid surgery. So we investigated seed implants, which are performed in Seattle by many skilled Oncologists. When we made an appointment with the oncologist in my HMO, The Group Health Cooperative, he advised me, that I am not a candidate for this procedure because I am taken Methotrexate, a medication to relieve my Rheumatoid Arthritis, and intense radiation through seeds could cause problems with the urethra. We were advised to meet with the Oncologist for External Photon Beam Radiation.
The Oncologist told me how this process would apply to my situation. She pointed out, that, because of the way the Photon Beam disperses, and the way it enters and exits the body, many healthy cells will also be damaged, which may cause the side effects like: Loss of bladder control, loss of ability to get erections, loss of sphincter control, bowl problems or problems with the colon. It seemed to me that the opportunity for side effects was too large for me to accept this treatment.
We felt we needed to continue looking for other options for treatment. We made an appointment with an Oncologist from the Swedish Medical Center to inquire about the “Mono Temporary Seed Implant Therapy, which is a High Dose Rate Brachytherapy. The Oncologist assured us, that I am an excellent candidate for this treatment. He assured me that the Methotraxate medication would not cause any additional detrimental side effects. We made an appointment for the treatment, and I wrote a letter to my HMO to please give me authorization to transfer for this treatment to Swedish Hospital. As answer to this request I received the notice from my HMO: “There is relatively little long-term follow up data for temporary radioactive implants, but I agree with information from the Swedish Hospital, that the side effects of temporary implantation with respect to the urethra are similar to the side effects of permanent seed implantation”. “We would be very happy to provide the external beam treatment but would not provide or pay for prostatic radioactive implantation”. We canceled the appointment with the Swedish Hospital.
My PSA at this time was 4.7.
About this time I received a call from a friend, who said, before you do decide on any treatment for your prostate cancer, you should give a call to my friend Larry. When I called Larry, he told me, that he had been treated for his prostate cancer at Loma Linda in the year 2000. He was so enthusiastic about the success of his treatments at Loma Linda, that he put together a little booklet describing the facilities and his personal experience. He contributes his time, to tell everybody, who wants or needs to know about this proton treatment option.
He invited us to visit him, and told us about Loma Linda. He is a member of the same HMO, the Group Health Corporation as am, and since he had received a referral from Group Health to Loma Linda, and I felt that this fact will help me when I ask for a referral. I called Loma Linda, and send them my medical records pertaining to the Prostate Cancer. We also contacted the American Cancer Society to inquire about the effectiveness of Proton Radiation at Loma Linda. They wrote back: “Loma Linda first began using the technique in 1990, so we don’t yet have data on how effective it may be in the long run. The most recent reports from Loma Linda indicate a 5-year disease-free survival rate of 89% for men who’s PSA was between 4 and 10 at diagnosis, with relatively few side effects. This rate is better then generally reported for conventional radiation therapy, and similar to the numbers seen with radical prostatectomy, but again the long-term rates are not yet available.
The most important sentence in this letter was: “ WITH RELATIVELY FEW SIDE EFFECTS.” We made the decision to go to Loma Linda.
I received a call back from Loma Linda, that my form of cancer can be successfully treated with the proton treatment and an appointment date for my visit was established. I wrote to Group Health and told them, that my choice of treatment is Proton Radiation at Loma Linda and I asked to please get a referral for treatment for this institute. I received the referral and on September 25,2002, My Wife and I flew to Loma Linda for my first appointment, to get a medical examination and to initiate all other medical requirements. We also looked and found a Place to live for the duration of our stay, at the Loma Linda Springs Apartment Complex.
I received 40 Proton treatments. One treatment every day, five treatments each week. My first treatment was on October 17, and my last treatment was on December 13, 2002.
I had very little side effects during the time of my treatment, and Hilde and I enjoyed the two-month stay in Loma Linda.
The Hospital belongs and is managed by the Seventh Day Adventist Church. Dr Slater of the Loma Linda University had the vision of creating this Proton Radiation Center, a powerful hospital based medical tool, for treating cancer. He was able to assemble a team of scientists and engineers and in 1990 they were able to start treating cancer patients with this advanced radiation therapy. Now they treat 150 patients each day, and have now treated more than 7500 patients.
I feel very privileged to be one of the people being treated here. I am very confident that I am healed, but I will know it for sure, after I take my next PSA test 3 or 4 months from now. Statistically, a person is considered healed from cancer if he survives five years without recurrence of cancer.
I am also very grateful for all the medical advice and support I received from the medical staff at Group Health, and for the information about personal experiences of treating this disease from friends.
Update 2015:
Back, in the year 2002, I was fortunate to find Loma Linda University Cancer Center for my prostate cancer treatment. My stay in Loma Linda felt more like a vacation than treatment for cancer. After treatments in the morning, my wife and I found time to get to know the beautiful countryside around Loma Linda. After my return to Seattle, it took about a year and my PSA values dropped below 0. Note that when I was diagnosed, I researched all the possible methods of treating this cancer and I still feel very glad that I found proton therapy and Loma Linda.
Karl Hermann - Seattle, Washington
Email: HIKA@aol.com