YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Charles Coryn lives in Tennessee, USA. He was 71 when he was diagnosed in May, 2008. His initial PSA was 10.4 ng/ml, his Gleason Score was 3+4=7 and although he says he was staged T2a, it seems this might be the pathological staging, with the clinical being T1c. His choice of treatment was Proton Beam Radiation. Here is his story.

There was no shock for me when I was diagnosed with Prostate Cancer in early 2007, as my father died a miserable death from metastasized prostate cancer in 1972, before PSA tests were available. I had been keeping track of my PSAs regularly since 1995, when it was 1.2, and the slow, upwardly sloped curve seemed ominous from the beginning. I recognized an exponential growth curve from my engineering background. Each year I was checked, and each year the PSA went up evermore so slightly, so I elected watchful waiting. I also began to notice the effects of BPH (Benign Prostate Hyperplasia). My urologist suggested a TURP (Trans Urethral Resection Procedure)
procedure, but I declined, electing watchful waiting again.

Little changed over the late 1990's and early 2000's, only the inexorable rise in PSA which reached 3.2 in 2005, a memorable year in which I retired and moved to Tennessee. With less stress my BPH seemed under control, so I continued the WW and stopped thinking about my prostate. I even missed getting a PSA test at all in 2006 because I felt so good, and I ignored a jump up to 5.75 in 2007. It was only early in 2008 when my PSA shot up to 10.36, followed by a 8.84 re-check, that I was shocked back to reality. I immediately hit the internet to learn my treatment options, and fortunately found the YANA site. I then spent hours and hours reading over the experiences of those with age and symptoms such as myself. I realized immediately what a tremendous resource these personal reports were. Also about this time I read Dr. Patrick Walsh's book, and I began contemplating surgery, which I had always been told was the 'gold standard'. I talked to a nurse friend's father who had had a very successful surgery, and went to see his doctor. But the terrible gut feelings I was experiencing regarding the possible side effects of surgery continued, and about this time I found Bob Marckini's book about Proton Beam therapy. Reading Bob's book, and the personal accounts of proton radiation he includes, gave me renewed hope that I might spare myself the incontinence and impotence that often occur. I later learned I couldn't have been more correct.

My primary care physician, who I later learned had never heard of proton beam radiation, referred me to a urologist to whom he assured me he would send his father to if he had PCa. This urologist immediately picked up his paper scraps and walked to the door when I expressed interest in proton radiation, saying he had no knowledge of it, and referred me to a radiation oncologist. Fortunately this oncologist was well informed regarding proton therapy, and when he learned of my interest, told me he thought UFPTI (University of Florida Proton Therapy Institute) was an excellent choice.

I called UFPTI and scheduled an appointment. I sent my biopsy and PSA reports down immediately, and was accepted for treatment following my initial one day checkup by the UFPTI doctor. It was determined that my Medicare and my AARP supplement would cover the costs. A few weeks later I again went down to Jacksonville, this time for a 3 day workup for treatment, including MRI's and some gold markers inserted in my prostate. I was now ready for treatment and was scheduled to begin Oct 20th, and to finish on Dec 15th. I felt very relieved.

The UFPTI staff was extremely helpful in finding a place to stay, and scheduled many lunches and dinners in some of the fine local restaurants. I selected a duplex near the Shands hospital for my dog and I, and we settled in for a comfortable two month stay. Treatments generally went like clockwork. First we would drink 15 ozs of water about 20 minutes before to help position the bladder. And then 100 ml of saline solution is injected in the rectum to position it. Finally the table is rotated into position and the beam activated. 60 seconds or so later the beam goes off and that's it. Each treatment took about an hour.

The most notable treatment side effects for me involved my BPH, which worsened and made urination difficult, day and night. If severe, they'll prescribe Flomax. A couple of reddish tennis ball sized circles appeared on my hips from the beam, and I did feel somewhat fatigued towards the end of treatments, which is common I was told. But all in all, I felt so good the day my last treatment was finished I got in my van and drove the 550 miles back home to Tennessee .

Please take the time to examine the Proton Beam therapy, as I feel it is the best solution for contained prostate cancer available. Read Bob Marckini's website as well as the Yahoo forum for more personal accounts of this miraculous, space-age treatment. As the proton beam equipment is further developed we can assume that it will be smaller and cheaper, thus more available. It is especially good for small brain tumors in children, and recently they are doing eye treatments.

At present there are 5 Proton Beam facilities around the country, and I see that South Florida has a couple of new facilities due to come online in 2010 and later.

 

UPDATED

February 2010

 

 

It's been a little more than a year now since I finished 39 Proton Radiation treatments at UF Jacksonville. My PSA has since been descending slowly, and is now at 3.44, coming down from a high of 10.8 at the time of treatment.

I have felt wonderful ever since finishing the program last December, with only some minor rectal bleeding in July, at about the 6/7 month mark. I have had no incontinence or impotence problems, and only my previous BPH symptoms are still apparent. I would never had expected being a cancer survivor without ever having felt like I had had a cancer, but that is what has happened.

Although a confirmed atheist, I must admit the proton radiation is probably as close to a miracle as I'll ever experience. I highly recommend proton radiation to each and every one who qualifies for this treatment.

Charles' e-mail address is: corynski@yahoo.com