Treated 2010 · Posted 2017

"More studies are badly needed to bring proper recognition and deserved respect (from the medical and the insurance fields) to a treatment that is highly successful and offers a better quality of life thereafter! I had to be my own advocate, as the medical professionals I interacted with seemed to steer me toward their area of expertise and did not offer other options or help me to explore other options – certainly not proton therapy! Patients who do not research as I did are literally at the mercy of their physician(s) to guide them, who may omit viable treatment options that the patient may otherwise choose. To not have truly comparable data showing the efficacy of proton therapy PLUS the advantage of reduced toxicity is, in my opinion, irresponsible and indeed immoral."

I am a mechanical engineer. I have worked in a nuclear power plant for the past 37 years, holding technical and managerial jobs. Needless to say, I am well versed in sub-atomic science and the power of that science. However, I was NEVER MADE AWARE of a treatment as advanced as proton radiation when I was diagnosed with prostate cancer, but more on that later.

Several years before being diagnosed, I had experienced several painful prostate infections. So, I was always ready to see my urologist at the slightest hint of it returning. In June 2009, I had a physical exam with bloodwork to check my PSA. I got a clean bill of health and my PSA was 1.0 and was steady, just as it always had been. However, two months later, I woke up one night to urinate and discovered my urine flow seemed restricted. My first thought was that it was another prostate infection, so I immediately saw my urologist who also suggested a digital exam as a precaution, even though he knew my PSA was 1.0. He felt some asymmetry and suggested a biopsy. The biopsy was performed and the results showed that I had prostate cancer (T1c-Def, Gleason Score 6). I was 53 years old. My urologist told me that it was caught early, so any treatment should eradicate the cancer and he set up an interview with an oncologist that he worked with. I interviewed the oncologist and thereafter began intensive research to find out ALL available options and ALL associated undesirable effects.

Friends gave me information; I purchased Dr. Patrick Walsh’s book on Surviving Prostate Cancer; I interviewed local patients of surgery and radiation; I interviewed several local surgeons; and I even attended a prostate cancer multidisciplinary consultation at Johns Hopkins to help with my decision. Each treatment was touted as the “gold standard.” However, NOTHING  gave me a clear enough answer, as it appeared that each treatment resulted in its own likely adverse effects. So, which adverse effect did I want to deal with for potentially the rest of my life? It was a dilemma I had no clear answer for. 

It wasn’t until a lady in my Sunday school class told me about her friend who went to Jacksonville, FL for treatment and I agreed to let him call me (just to be nice to her). He told me he'd had something called proton radiation therapy and this facility was associated with the University of Florida. This set off another frenzy of research and investigation on my part. The Institute sent me some useful information, including Bob Marckini’s book, which I read immediately. I also contacted as many former proton patients listed in his book as I could and also some sent to me from the proton center. They reported very good results AND the rarity of “collateral damage” and adverse effects.

I also began exploring and researching the science behind proton therapy and how it differed from photon (standard radiation) therapy. I read articles from medicalphysicsweb.orgoncolink.org, the Loma Linda University Cancer Center 15-year study, cancernetwork.com, ProstRcision, and others.  After weeks of vigorous research, phone interviews, and comparing toxicity/side effects with quality of life thereafter, the evidence and information was compelling. I felt proton therapy was the obvious choice, heads above anything else. It was extremely disappointing and frustrating that information about this option was not readily available nor even suggested by ANY medical professional I had interviewed! When I told my urologist my decision, he strongly advised against it, saying it was new and unproven and that he would rather fly me to the Bahamas for HIFU!  He is no longer my urologist.

I began proton treatment in December 2009. The treatment was just as Bob Marckini describes in his book. There was nothing invasive about it. I showed up at my appointment, drank my prescribed amount of water, and after a short wait was led back for about 10 minutes of treatment. My total time at the institute for each treatment was less than one hour! I was very impressed with the medical and non-medical staff at UFPTI. They were very friendly and very knowledgeable. I truly felt I was in good hands.

I am seven years out now and my PSA is a steady 0.5 and I have ZERO problems with ED, incontinence, or any other effect. I am one the few folks who started experiencing rectal bleeding after about 18 months and still have some in about every 3 to 4 stools. However, it is not a large blood loss and not a hindrance to my quality of life at all.

More studies are badly needed to bring proper recognition and deserved respect (from the medical and the insurance fields) to a treatment that is highly successful and offers a better quality of life thereafter! I had to be my own advocate, as the medical professionals I interacted with seemed to steer me toward their area of expertise and did not offer other options or help me to explore other options – certainly not proton therapy! Patients who do not research as I did are literally at the mercy of their physician(s) to guide them, who may omit viable treatment options that the patient may otherwise choose. To not have truly comparable data showing the efficacy of proton therapy PLUS the advantage of reduced toxicity is, in my opinion, irresponsible and indeed immoral.

"I have not spent one dollar on medicines or follow-up procedures in my 13 years post-proton treatment."
- Wayne Swartz, BOB Member
"You owe it to yourself and to those who love you to safeguard your quality of life. Surgery will not do that ... proton therapy can."
- Jeannie Chase, Spouse
- Warren Johns, BOB member
"15 years have passed since exposure to the penetrating power of the proton and the superb medical skills of the 'beam team.'”
"The procedure was a breeze. It has been 10 years and I feel GREAT.”
- Tom Wright, BOB member
"As long as I live, I will do everything I can to spread the word about proton treatment.”
- Jim Tuggey, BOB member
"I am celebrating 8 years post-treatment with no recurrence, no side effects, and not one more penny for medications."
Robert T. Gore, M.D. F.A.C.O.G.

 


The Purcell's fairy tale life came to a halt when the doctor diagnosed Pat with prostate cancer. 

Little did they know that 25 years earlier, a doctor 1,200 miles away risked his entire career to pioneer proton treatment with virtually no side effects. “Against All Odds” follows a couple’s desire to fight cancer and unveils the historical account of a doctor’s passion to discover a better treatment option.

Watch the video.


Questions? Ask us anything.

Proton Therapy Advantages:

· Less damage to healthy tissue
· Non-invasive, painless

· Outpatient setting
· No recovery time
· Lower chance of recurrence
· Few, if any, side effects

Want to talk to former proton patients? Just ask.


You Can Beat Prostate Cancer — NEW Edition Available

Written by former proton therapy patient and BOB founder, Robert Marckini

Buy it on Amazon.