Treated 2002 · Posted 2003
“I appreciate the opportunity to share my story in hopes that it will benefit others.”
Currently, my post proton treatment, 3 month check up, reflects a PSA of 1.85, down from the initial PSA of 3.56. My journey started with a routine examination by my primary physician in June, 2001 and ended with the last of my 40 treatments at the Loma Linda Proton Center in September, 2002. My reduction in PSA was accomplished without any noticeable side effects. The operative phrase is, “without any noticeable side effects.”
My wife and I live in Northern Virginia, near Washington, D.C. Believe it or not, we moved here from Redlands, California less than three years ago. In fact, I am reminded that I commented to myself when I read in the paper that the new Proton technology was being installed at Loma Linda, “That’s amazing. I’ll never use that”; so much for my astute prognostication abilities. Twelve and a half years later I reported to the Proton Unit for treatment.
I had my first indication that something could be wrong during my yearly examination in June, 2001. My primary physician, after performing the hated DRE, made this offhand comment: “Something doesn’t feel quite right; I’m sending you to Walter Reed (I’m in the military medical system) to see an urologist.” My PSA was in the “normal” range but there was an area on my prostate that didn’t feel proper. My primary wanted somebody to take a closer look and perhaps do a biopsy.
My first trip to Walter Reed went well. The urologist informed me that he understood why the primary scheduled a visit. Something definitely did not feel right; he asked that I come back in a week for a biopsy. The first, second and third biopsies were all inconclusive. Allow me to pause here a moment for a comment, the part of my anatomy where all of the poking and probing was taking place is sacrosanct to all of us macho type individuals. That being said, imagine the kind of will power that I had to muster to place myself in the hands of people performing the biopsies for a fourth time.
I frankly did not think that any thing was awry with my health because I felt very healthy. Even though I had lost my Father to prostate cancer in 1989, I believed that a PSA in the “normal” range, below 4, coupled with the inconclusive biopsy results, made all of those shenanigans with my stern a waste of time.
A few days after my fourth biopsy the fateful call came from my urologist telling me, “You have prostate cancer with a Gleason score of 7.” I had no idea what Gleason score was, but I did know that I had cancer and that we, my wife and I, should take a logical approach to this challenge. My urologist, during the same conversation, made an appointment for me to see him the following week for consultation and to go over my choices regarding courses of action.
The evening that I received that dreaded call, my wife, bless her heart, went directly to the Internet and started the research process. We both knew that Prostate Cancer was slow moving but we wanted to look at other options and be prepared prior to our visit with the urologist. We came to the conclusion, after much investigation, that Loma Linda and the Proton Program was the best overall decision. We believed that it was a treatment program that would suppress the disease as well as maintain the quality of my life.
When I met with the urologist, I had already decided what path I was going to take but I listened to my urologist’s “sales pitch.” According to him, I only had two options, surgery or radiation. He gave me a laundry list of side effects and potential problems from both surgery and radiation although he did recommend that I visit the Radiation Unit for consultation. He told me that if I chose surgery to let him know by no later than the following week so that he could work it into his schedule.
What he didn’t know was Loma Linda had already accepted into the program for July, 2002. I asked him about Proton Treatment at Loma Linda and was told that Walter Reed had sent a couple of people there for treatment and as far as he knew it was good treatment. When I mentioned my start time he said that there was some mild concern on his part because my start date was not until July and he felt more comfortable with me starting some kind of treatment within a four-month window. It didn’t matter to me because by that time my decision was cast in cement and I had another hurdle to negotiate before getting into Loma Linda.
One caveat of the Loma Linda program was that the upper weight limit was 255 lbs. in order to properly fit into the “half casket.” I was 320 lbs in January and the 5 month waiting window afforded me the opportunity to lose the weight. I started eating healthy, 1800 calories a day, did strength training and cardio for 2-3 hours 6 days a week and successfully lost the weight, weighing in at 252 lbs. on July 2nd at Loma Linda. This cancer gave me a positive platform for change that I am currently maintaining and have lost another 20 lbs on my way to my goal of losing 110 lbs., which I will reach by late Spring. A welcome side effect of this weight loss was my removal from my diabetic medication; it seems as if diet, exercise and weight loss does in fact go a long way toward control.
I was accepted into the Proton Program in February 2002 and scheduled to report July 1, 2002. The good news, we were going home!! Children, Grandchildren and relatives were happy distractions. The main challenge was keeping focused.
I soon realized how blessed I was to be a part of such a program. At my first Wednesday support I met a “graduate” by the name of Alex Plummer. He spoke and I was very impressed, especially with his efforts to give something back to the African American high-risk community. I drove to Pasadena and met with Alex and left armed with telephone numbers and ideas on pursuing a similar course of action in the Washington/Baltimore area.
I gleaned some very scary statistics from an article written by Courtland Milloy in the January 29, 2003 edition of the Washington Post. Black men in the Nation’s Capital have one of the highest rates of prostate cancer in the world, in fact, according to the American Cancer Society 600 cases per year of prostate cancer will be diagnosed and of those 600 cases, 100 will die.
Such deaths can be counted in advance, year after year. Why? Michael Richardson, interim chief medical officer for the D. C. Department of Health said, “We know people won’t see a doctor unless they are bleeding from some orifice, by then it may be too late.” CeCe Dorough, Programs Manager for the National Prostate Cancer Coalition, said that many Black Men don’t understand the disease and “may not feel comfortable talking about prostate cancer because it occurs in a part of the body that represents their manhood.” For those who believe manhood emanates from between their legs, a mental makeover is prescribed. Maybe that would help some men put mind over matter when it comes to those intrusive exams.
Theories abound on why the propensity to have such a high rate of prostate cancer among African Americans is a fact. These theories range from diet to genetics. Michael J. Manyak, Chairman of the Department of Urology at George Washington University stated, “The wild card in all of this is genetics. There is research into whether Black and White Men metabolize testosterone differently and in such a way that accelerates growth of prostate cancer in Black Men.” Doctors say that the proper response is for Black Men to become more vigilant and begin screening for prostate cancer by age 40, instead of age 50 as recommended for White Men.
Those without adequate health coverage are automatically placed at a disadvantage. If free screening is not available, the average cost of a prostate exam is $70. A follow-up biopsy is approximately $1500 an if cancer detected, conventional treatment alone can cost as much as $30,000.
I am currently in touch with the National Prostate Cancer Coalition and I am meeting with them to implement a plan to share this knowledge that I have acquired with high-risk groups. They appear to be people that I will be proud to affiliate myself with. It seems that we may have found each other at the proper time. They do not have a recovering prostate cancer spokesman working with them in this area.
This journey has been incredible on many levels. I have met so many wonderful supportive people both medically, at the center and am keeping in touch with other cancer survivors that I met through the support functions.
I appreciate the opportunity to share my story in hopes that it will benefit others. I am looking forward to a long, fruitful relationship with the BOB and invite conversation through e-mail or telephone if anyone has any questions or comments.
William D. Jackson
Tel :( 703) 441-8145