Treated 2012 · Posted 2012
"I was a short twelve hours away from having the seeds procedure ... Not realizing it at the time, I now consider this Divine intervention!"
Having had BPH (benign prostatic hyperplasia) for some time, I was diagnosed on May 09, 2011 with adenocarcinoma, PSA 8.2 (my doctor did a DRE (digital rectal exam) just prior to lab draw) , Gleason 8 (4+4, 3 of 5 cores, 5% 0f total tissue) in right lobe, Gleason 7 (4+3, 2 of 6 cores, 5% of total tissue) in left lobe.
Upon diagnosis, and having previously pondered (somewhat naively) what treatment I would choose should I ever get prostate cancer, I immediately decided to go the "seed" implants route. I met with my urologist, whom I had been seeing every six months for several years. I informed him of my choice. His father had had PCa some years ago, chose seeds, and had a positive outcome. So my doctor was supportive
I first, however, had to see a radiologist. That took a few weeks and it was at the first meeting that, in addition to the seed implants, five weeks of external photon beam radiation following the eight week "life" of the seeds was also recommended. Then my urologist suddenly retired.
Several weeks passed before the practice assigned me to a new urologist. I met the new doctor; he seemed pleasant enough and appeared supportive of the seed procedure also.
Having some doubts and wondering if there were other treatments that I should consider, I waited a bit longer. During this time, a friend suggested I visit a cancer center in Houston, Texas. About six weeks later, I met with a new urologist in Houston. I hoped that at this visit I might learn of new and cutting edge treatments for prostate cancer. Not to be! This urologist only considered the "gold standard"—radical prostatectomy. He was very matter of fact about it. However, when I stated I was not ready to make that choice, his response was, "Okay, we'll put you on the pending list." He then stood up and quickly left the room.
At this point, I was aggravated that my seed procedure had been greatly delayed. And, I resigned myself to the seed/external beam treatment and scheduled the procedure to be done on a Friday morning.
The Thursday morning before my scheduled Friday, 7:30AM seed implant procedure, I remembered a friend that had had PCa some years ago. I called my friend, Rick, and shared my diagnosis and choice of seed treatment. He had had robotic prostatectomy treatment five years ago with no complications, but his PSA remains high; indicating that he still has PCa. He has been on ADT (Lupron) ever since. In our phone conversation, almost in a passing comment, Rick mentioned a treatment using protons. He had heard about someone having proton treatment in Jacksonville, Florida. I finished my conversation with him and immediately got on the Internet to search for "proton treatment for prostate cancer." I found the University of Florida Proton Therapy Institute (UFPTI). I quickly called them and got an ear full from the intake agent. What I learned in that conversation was enough to make me pause.
At noon, I put a call into my urologist to discuss proton treatment. When he had not returned my call by 7PM that evening, I left a message for my radiologist. He returned my call in ten minutes. We had a very brief discussion about proton therapy. He then suggested that we postpone the seed implant procedure.
I was a short twelve hours away from having the seeds procedure at this point. Not realizing it at the time, I now consider this Divine intervention!
UFPTI sent me Bob Marckini's book, "You Can Beat Prostate Cancer - And You Don't Need Surgery to Do It" - and other information. I read the book in one sitting and knew immediately that proton therapy was my treatment! I liked the fact that proton releases most of its energy in the prostate and spares surrounding organs and tissues from collateral damage. Also, I liked that the probability of a cure is at least as good as other forms of radiation treatment with fewer complications. So, at this point, I was anxious to get on with it. Sign me up!
Well, not so fast. There were several qualifying steps I needed to move through. Chest X-ray, CT scan, full body bone scan, MRI, colonoscopy … If all those were clear, then I might be a candidate for proton therapy. Still, I had to have my first appointment. It took about two weeks to get my appointment. So now I was very anxious and fearful that I, for some reason, might not be accepted.
It was during this two week wait that I had the chest X-ray and all scans except for the MRI done. I also contacted about six former proton patients. The six I picked had all posted testimonials on the www.ProtonBob.com website and reported high Gleason scores prior to treatment. Some had gone to Loma Linda University Medical Center in California and some were treated at UFPTI. All were ready and willing to talk with me. Their sharing and encouragement had a calming effect on me.
At this time, I also met again with my urologist (I can't remember the reason). By now, he knew I was considering proton treatment, so I asked his opinion. He knew about it, but would not recommend it as the appropriate treatment for me because I was "high risk." He recommended radical prostatectomy. He told me that my age (64) and good health made me a good candidate. He suggested the DaVinci method. Curious, I asked him how many DaVinci procedures he had done. He replied, "I've been involved in about 100 of them." I wasn't at all impressed with the 100 figure and the term "involved in." That sounded vague to me. Could that mean he was standing in the operating room while someone else performed the procedure? It didn't make any difference - I'd made my decision.
I had my "three day work up" appointment and passed the MRI. I was accepted for proton treatment! In fact, because of my "high risk" diagnosis, I was offered and accepted participation in a clinical trial, "PRO5". This trial consisted of 45 proton treatments, each treatment being a lesser amount of radiation than the normal course of 39 treatments. The total radiation over the course of treatment would be the same as that of the 39 treatments, however. The proton would be coupled with 8 weekly "low dose" chemo infusions. The chemo (Taxotere) was about one third the strength of "regular" chemo and was intended to "potentiate" the effects of the proton treatments. All of this would then be followed by six months of ADT (two 3 month Trelstar injections). The best way I know how to explain this is that the ADT part of the treatment is the "kick em' while their down" approach. Any cancer that proton hasn't killed has at least been weakened, so it's "starved" by taking away its food - testosterone.
About six weeks later, I had my first treatment. It was October 31, 2011. My final treatment was January 06, 2012. During treatment, I leased an ocean front condo on the beach and loved it. My commute time was about 30 minutes with most of my treatments early in the morning. I had no significant treatment side effects. I never had any pain. My hair did thin a bit from the chemo, but I experienced no heavy hair loss. I did have increased frequency, with urgency, of both urination and loose bowel movements. And, early on, I had a week of hemorrhoid problems that prescription suppositories quickly resolved.
My last treatment day, I was "ballooned" twice! I was "locked and loaded" and all ready to go when the equipment that locates the position of the gold coil markers malfunctioned. I laid there for several minutes while techs attempted to fix the problem. Finally I was de-ballooned and sent back to the lobby, to void my bladder, drink 15 ounces of water and restart my 30 minute wait. Before I voided my bladder, I was called back to the treatment room, ballooned again, and had my final treatment.
I think I was supposed to have my first three month Trelstar shot before I left the treatment center, but that didn't happen. I returned home to Tennessee and had to find an oncologist to get the shot. I had reservations about this part of my treatment because of the side effects, but was afraid not to do it. I did experience some mood swings, hot flashes, mid riff fat accumulation, and zero libido. My testosterone dropped to seven at the end of three months and fifteen at the end of six months. I went on Prozac for a while to address the hot flashes. It helped, but did not totally relieve them. It also caused me to yawn a lot. At this writing (8/25/12), my hot flashes are over and libido appears to be returning. I'm working on the waist fat! My family doctor has put me on 5mg/day of Cialis which has certainly helped the libido matter. His explanation is that the sooner one gets blood flowing to the genitals, the quicker and more certain that part of your recovery will be. Works for me!
I did not return to Florida for my six month follow up visit. Two nurses just the week before, in separate phone calls, had collected my current status. The only thing left to have done was a DRE. I had my small handed, of oriental descent, family doctor do that at home and send the report to UFPTI. He reported no palliative nodes, felt supple, no blood in my stool, and of normal size! Urinary frequency has decreased. I still have some urgency but that seems to be subsiding. I will have nine month labs done next month.
I am very much at peace with my choice of proton treatment. My experience at UFPTI was outstanding. I truly believe it was God's intervention that led me to proton treatment. I kept wandering off the path, but in His own unique way, He kept re-directing my steps. If you never have reason to become inducted into the Brotherhood of the Balloon, then God has smiled upon you. If you do have such a reason and choose to be inducted, then, again, God has smiled upon you.
Charles Reinhardt
cbrj@comcast.net
cell 615-456-2888