I've been wrestling so many personal problems that I've not wanted to burden anyone with any of it.

I hope you never need to know, yet, as I complete my second week of prostate cancer therapy I'm hereby sharing my expanding knowledge of this disease and Proton Beam Therapy (PBT), a not widely known or understood type of External Beam Radiation Therapy (EBRT). Beware; this is long and a little bit yucky. Subsequent to my positive biopsy in April, at Georgetown University Hospital, I combed the world for every available solution. After becoming fairly conversant with the range of possibilities, I sought therapeutic consults at Georgetown, DC; Sloan Kettering, NYC and M.D. Anderson, Houston. I chose these institutions as versus nearby Johns Hopkins (who famously favors surgery for prostate cancer), for example, because I believed they possessed and objectively employed all of the available therapies, and, would recommend the most suitable for me - a naive assumption.

During that time I was rather biased against ‘Radiation' based on my awareness of too many adverse side effects with acquaintances, as well as the implied message when counseling physicians say: "at your age you should really prefer surgery to radiation". I was also hoping to find a minimally invasive therapy, which is why I found HIFU (High Intensity Focused Ultrasound) more attractive than a dangerous traumatic surgery. I was on the edge of my seat expecting to hear why newer modalities such as Cyber Knife, image guided IMRT or perhaps High Dose Brachytherapy should be my choice. Sadly, all of those consults resulted in the same recommendation, Radical Prostatectomy. Because my tumor is in wide contact with the prostate base, microscopic extra capsular extension cannot be precluded. Hence the surgeons have been reluctant to use less invasive robotic surgery, preferring to enlist their keen sense of touch, as well as vision, as they would explore my situation. Moreover, given the possibility of extra capsular extension, they proposed to "bathe your pelvic cavity with radiation, just in case". WHAT!?! Why slice and hack away at what's visible, if you're gonna zap it all anyway?!

Memorial Sloan Kettering Cancer Center is an inspiringly impressive institution. You can rise above your anxiety and skepticism as you're counseled by one of the world's elite surgeons; despite his informing that you will lose three or four pints of blood, and require as much as eight weeks recovering. Worse yet, there is no statistical proof that surgery produces better outcomes than doing nothing at all! It took me nearly a week to undo the brainwashing and resume my research in Germany, France, Austria and Japan. HIFU is not an approved therapy in the USA as the FDA delays it until profiteering arrangements can be worked out among the usual suspects. International practitioners have performed thousands of procedures over the past dozen years, however, and many Americans regularly travel to Canada, Mexico, the Dominican Republic, Japan and Europe for this treatment, which is approved in all of these countries. Professor Michael Marberger at the University of Vienna made me realize that HIFU might less invasively accomplish what RP surgery could, but, probably would not preclude precautionary post surgical radiation.

I thank God that Al Gore invented the internet because it enabled me to learn about and become comfortable with the discovery and development of, and personally calibrate state-of-the-art medical radiation therapies. As I studied, I had to overcome my fear and strong aversion to radiation before I was able to productively peruse the literature with an open mind. It also took a while for my brain to happily grapple with subatomic particle physics, and the gobbledygook of nuclear medicine. Doing so made me realize how unpracticed in studying technology I've become in retirement (I wonder if an under exercised brain is truly a spawning ground for Alzheimer's.) I've come to believe that the most important concept to understand in radiation therapy is referred to as "the Bragg peak". Figure 2 in this link http://www.floridaproton.org/cancer-treatment/terminology.html graphically reveals that proton radiation is considerably less toxic than photon (x-ray) radiation on its way to a target, explosive on the target and virtually non-existent beyond the target. Stare at the graph and ponder the therapeutic implications for cancer of the eye, or a brain tumor, for example.

Serious therapeutic PBT began in 1961 with collaboration between the Harvard Cyclotron Laboratory and Massachusetts-General Hospital. In the 1980s Dr James Slater commenced his pioneering work in Proton therapy at the Seventh-day Adventist Loma Linda University Hospital. In 1990, Fermi Laboratories installed a large particle accelerator at Loma Linda, to create the first large scale proton treatment center. Today there are some two dozen centers worldwide but only five in the USA - the sixth opens in November at the University of Pennsylvania, but will be devoted entirely to clinical trials during the first twelve months of operation. Other U.S. facilities include Massachusetts-General Hospital, M.D. Anderson Cancer Center and the University of Florida's Proton Therapy Institute. They are scarce due to expense, with facilities costing hundreds of millions.

The heart of each center is a cyclotron weighing nearly ½ million pounds, due to the massive internal magnets, and costing over $100 million. A Belgian company, ION Beam Applications, currently dominates that market but VenRock and others are speculating via start-ups, like Still River Systems in Littleton MA., http://www.technologyreview.com/biomedicine/17418/, who hope to create smaller and more affordable equipment for common hospital settings. Meanwhile each center spends about $55K per month for water, not just for cooling, but because they strip the O from the H2O and then use 235 million electron volts of electricity to shear the single electron from the proton at the heart of the hydrogen atoms (electricity bill is another $55K per month). Since the electron is negatively charged they can simply drain them to ground. Accumulating protons are fed into the cyclotron and accelerated, via rapidly reversing electromagnets, to a speed of 62% of the speed of light and then steered to one of several gantries where, inside of each, a patient lays waiting to get zapped. At 62% of C, the protons can penetrate up to 15" of human bone/tissue, so they introduce carbon fiber attenuators into the ion beam path to slow the particles if they need to deliver more shallow treatments, such as with eye cancer. Additional custom tailored apertures (made of brass) and attenuators (made of polycarbonate {aka Lexan} ) further shape the particle beam as it exits the treatment nozzle in an attempt to achieve sub-millimeter precision in matching the shape of the tumor - the geometry of a pineapple isn't complex compared to many tumors. An extremely skilled CNC operator mills these apertures and attenuators to match a digital rendering of the target tumor(s) created from a synthesis of MRI, CT, PET and X-ray images. The preferred level of digital imaging precision only became affordable during the last decade of progress in computer technology. It is this beam shaping, in concert with Bragg peak physics, which allows PBT to uniquely avoid damaging ‘near target' bones, flesh and organs. A number of physicists, dosimetrists, radiotherapists and a physician comprise the proton oncology teams attending to each gantry and its queue of patients - each gantry sees about 45 patients per day.

My cost is not quite $175K for the nine weeks of therapy, about 90 to 95% of which is covered by CIGNA. I gather that it's only in the last few years that MEDICARE and insurance companies are covering Proton Beam Therapy, after many very influential patients brought lots of pressure to bear. Nonetheless, there are calls for Randomized Clinical Trials to compare PBT to much less expensive IMRT, see this: http://jco.ascopubs.org/cgi/content/full/26/15/2592. I'm very fortunate to enjoy good insurance coverage, be able to settle into extended residence away from home and to live in a country where such a scarce and precious resource is not yet denied to anyone.

Proton Beam Therapy is also a single treatment, twenty minute cure for another common aging problem, namely, ‘Wet' (but not ‘Dry') Macular Degeneration. This is becoming so sought after that UFPTI is bringing up a fourth gantry dedicated to ocular therapy.

I've now come to know about three dozen patients here in Jacksonville, from all over the U.S. plus a few Europeans & South Americans. Consistent with commentary on internet patient forums, everyone agrees that it's necessary to drink lots of pure cranberry juice to minimize inflammation and preclude the need for either Flomax (dangerous drug!) or catheterization. Otherwise, except for a small percentage who sometimes experience a slight burning sensation while urinating, and, the minor sunburn that eventually shows up on everyone's hips, side effects are rare and minimal thanks to the protocols refined over the past fifteen years at Loma Linda - even the exhaustion so typical with photon radiation is uncommon. Outcomes for thousands of patients are incomparably wonderful yet most physicians you might query about Proton Beam Therapy will not know much if anything about it. It's utterly amazing!

Thus far, my experience leads me to suspect that:

* For the vast majority of prostate cancer patients, their initial encounter with their diagnosing Urologist winds up determining their modality because that physician's repertoire is typically constrained by his business affiliations and/or ignorance.

* Surgery is apparently so lucrative that alternative therapies are given short shrift. And,

* Physicians are so busy that they don't/can't take the time required to stay abreast of the latest developments in their own field of interest.

Finally, I should share a nutritional theory of why I developed prostate cancer. There is a growing school of thought that gluten sensitivity impairs the immune system, therefore permitting malignancies because the irritated intestines malabsorb critical proteins and nutrients. Whenever new cancer patients are able to report protracted symptoms of: Celiac Disease, Irritable Bowel Syndrome, Tropical Sprue, or similar, nutritionists increasingly recommend elimination of all wheat & gluten. In my case, I resumed only 1.5 bowel movements, of proper consistency, per day instead of the three or four I had been experiencing for about three years. I sure miss pizza, pasta, breads and cakes, but I'm happily subsisting on rice and quinoa based alternatives emerging at Whole Foods, Trader Joe's and elsewhere.

Frequently the staff here at UFPTI tells us they "love treating the endless stream of old guys because you have easily cured cancers and good health insurance. That sort of regular baseline revenue helps us deliver discounted magic for the pediatric cancer patients we see". Yet, some neighbors in the local boat marina I'm using, believe that none of we old guys should be wasting treatment slots; rather, a National Health System should decide when and for whom expensive resources ought to be allocated. I'm thankful that I'm confronting an early prostate cancer instead of a worse situation. And, I'm especially thankful that I'm dealing with my disease before the Gubbmint reforms our health care system - the Europeans who are here can't get Proton Beam Therapy in their socialized/rationed medical systems at home. Please feel free to forward this to whoever might benefit. I hope that you and yours never need this info and that therapy is not rationed when and if it's necessary. Be well.

Best regards,

Don Parker

P.S. I also lost my dog with a brain tumor, my Mom has been near death for months, and, s/v SILKIE hasn't left her slip since 2008. Hence I had buried myself in reclusive activities as a distraction before Peter found me.