Treated 2002 · Posted 2002 · Updated 2015
“I DO NOT regret choosing Loma Linda and I encourage anyone to explore it to the fullest!”
I've watched my PSA for ten years (I'm now 57) since my father's death from Prostate Cancer in 1992 (four of his brothers also had prostate cancer, one before and 3 after him). In July 2001 my PSA was 1.6 -- I decided to have the DRE in October. The urologist noted that the PSA had risen from 0.9 in May of 2000, and he said he felt an abnormality, and wanted to do a biopsy. Ultimately (December 10) the diagnosis came back -- positive! My doctor offered surgery, radiation or implant radiation as the options. I have been aware of Loma Linda's treatment through most of their history, but not well versed.
I returned to my doctor one week later and told him that I had decided to explore surgery or proton therapy. He strongly suggested the implants, but referred me to the head urological surgeon of Harvard University, and noted that the Proton Therapy was experimental. I left his office with an appointment with the surgeon for about 3 weeks later, stopped at Barnes and Noble and purchased Patrick Walsh's book, "The Prostate: The complete guide for men and the women who love them". I had called Loma Linda (1.800.PROTONS) for information already.
By the time I saw the surgeon, I had read Walsh's book and studied Loma Linda's material. I told him that I was exploring options, felt inclined to either Proton Therapy or surgery and mentioned the urologist's interest in the seed implant. The surgeon told me he liked to have at least a 10-year history of treatment to feel confident and the seed implant only had about 8 years! He referred me to a radiation oncologist and the physicians associated with the Northeast Proton Center in Boston. We also scheduled surgery. I began negotiating a consultation date with Loma Linda.
My visit with the oncologist was pleasant -- he reviewed options and said Loma Linda was a very credible institution. My visit with the physician associated with the Northeast Proton Center was very helpful. He urged me to pursue Loma Linda because the Boston center was not yet ready to begin treatment of prostate cancer patients.
Following my consultation at Loma Linda I had no question which method of treatment I would pursue -- I chose the proton therapy. I began on February 27, 2002 and finished on April 23, 2002.
Deciding factors for me included the limited side effects (with heavy emphasis on the minimal collateral damage compared to conventional radiation), and ability to avoid the invasion of surgery (to say nothing of the protection from the side effects associated with surgery).
My Gleason score was also 3+3 with a T1c stage cancer. Throughout the treatment I noticed four side effects (obviously, these seem to vary from person to person)
1) Moderate burning upon urination. For me this was like a roller coaster -- not constant, and I did not need medication to relieve it.
2) A bathroom urgency -- reduced ability to postpone relief! This was for both urination and bowel movement. Not particularly problematic, but noticeable.
3) Some fatigue during the final 2 weeks -- occasional days, not constant. Several fellow "patients" noted that if they maintained their exercise program they did not feel the fatigue. I walked 2-4 miles per day during treatment. Loma Linda Medical Center is associated with a university, which has a wonderful gymnasium/fitness center, and as a patient you're given a free 3-month membership to use the facility any time you wish (weight room, swimming pool, various exercise machines, indoor or outdoor track, racquetball courts, basketball court, etc., etc.).
4) Tenderness (meaning strong burning, discomfort) in the rectum during the final two weeks. At its worst, that created uncomfortable sensation independent of "traffic". Now one week after treatment closed, that is significantly declining to near normal. (For what it's worth, the best way I can describe this is that it is like an internal sunburn. It happens because the rectal wall does receive some of bombardment radiation during treatment. I'm told it is MUCH less than what happens in conventional radiation).
I found the entire staff in the Radiation Medicine Department of Loma Linda University Medical Center to be very accommodating, very professional, very supportive, accommodating and helpful. It is an outstanding program from start to finish. During treatment I became acquainted with lots of fellow patients. The stories they told of their experience in discovering Loma Linda were often grounds for smiles -- the stories they told of friends, relatives, acquaintances who had chosen other forms of treatment consistently reinforced my satisfaction with the Proton Therapy program!
So there you have a thumbnail sketch of my story and experience.
In summation: If I were to turn back the pages of time to November/December I would do the very same as I have done. I DO NOT regret choosing Loma Linda and I encourage anyone to explore it to the fullest! In my opinion, it would be a mistake for anyone seeking treatment for prostate cancer to neglect to look seriously at Loma Linda as one of the top options!
Update: December 2015
In the thirteen years that have lapsed since my proton treatment, I have never regretted my choice. I have had no lasting side effects from the treatment and to date no evidence of recurrence. My PSA is consistently below 0.5. My appreciation for the Loma Linda Proton Treatment Center is undimmed with the passing of time.