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| Each man's Journey is listed under his BASIC treatment. When you click on one of the names to read a particular Journey, you may see one or more different treatments in bold lettering immediately above the Journey text. You will see (Recurrence) if they are due to a recurrence. Otherwise, they will be treatments used in conjunction with the basic treatment, i.e. Lupron with External Beam Radiation or External Beam Radiation with HDRT/Brachytherapy, etc. | |
Active Surveillance Alternative (Natural) Therapy Cryoablation - Freezing Hormone Therapy Radiation - Brachytherapy Radiation - External Beam Radiation - HDRT Surgery - Open Surgery - Robotic |
My prostate cancer journey officially started on November 12, 2001 because of a 4.1 Prostate Specific Antigen (PSA) at age 62. I say "officially" because that was the day I saw Dr. Maureen Bradley. My wife, Marianne, and I had just relocated to Florence and I needed authorization for a new PSA test. Dr. Bradley didn't like my previous 4.1 PSA and referred me directly to urologist Dr. Peter Bergreen. He wasn't totally pleased with the results of my Digital Rectal Exam (DRE), so we decided a biopsy was in order. "You have prostate cancer" absolutely changed our lives from that day forward. I was in the 20 to 25 percent of men whose prostate cancer didn't cause a rising PSA. My PSA was 4.1 in December 2000 and still 4.1 in December 2001. In simple terms, my flat PSA number was masking the growth of cancer in my prostate and was basically worthless for diagnostic purposes. My biopsy showed prostate cancer with an addendum perineural invasion. That's kind of like prostate cancer+. Marianne and I were able to attend one Man to Man meeting prior to my surgery and were ecstatic to see actual prostate cancer survivors. We had just gone through several miserable weeks searching for answers to all our questions and fearing our retirement was already over. Those few men gave us hope! On January 30, 2002, I had a radical prostatectomy. Why surgery? Number one, Marianne and I wanted it out-gone! Number two, I wanted all my treatment options and if I had radiation first, I would give up the option of having surgery later. Surgery after radiation is called "salvage surgery" and the risks of complications are increased so greatly that many surgeons refuse to do it. Number three, only with surgery could the pathologist actually examine the prostate and give me a definitive report. Even though the pathologist's report following surgery showed the surgical margins, seminal vesicles and lymph nodes all being clear, there was this "capsular penetration" reference that got my attention. Oops, that made it prostate cancer ++. The capsular penetration increased my risk for recurrence considerably more than the perineural invasion. In spite of those risks, Dr. Bergreen recommended not going directly to external beam radiation because, as he said, "Radiation has its own set of problems and we can always go there later if necessary." During the first several years following my surgery, my PSA did everything but settle down: 0.020; 0.010; 0.040; 0.020; 0.030; 0.020; 0.040 and finally 0.050 on June 8, 2005. From that point, it started moving upward in small increments, but always upward (remember the capsular penetration and perineural invasion). I shared my reports at Man to Man meetings on a number of occasions and even used it as an agenda item, "You Make the Call," to see what others in the group would do if they were in my shoes. Of course, we always went back to Dr. Mehlhaff for the final word. His final word was that if it continued upward, our next decision was to determine the point when we would begin radiation. In my case, we drew the line at 0.30 on November 27, 2007. Nearly six years after my initial treatment, I was on my way to Springfield for Image Guided Radiation Therapy (IGRT), with transportation being provided by Marianne and Friends of Florence, to squelch my prostate cancer recurrence. Thirteen months out from the end of my radiation (Valentine's Day 2008) and with two PSA tests now complete, my PSA is deemed undetectable at less than 0.008. One unexpected side effect that was resolved very quickly was lymphedema in my lower extremeties. It was my good fortune to have heard Paul Niblock tell everyone at a prostate cancer support group meeting of his lymphedema problem following Cryoablation (see his Journey on this website). I was able to see the same Sue Kelley that he saw and she had me improving with the first treatment. She is a specialist in manual lymph drainage massage and she really knows her stuff. We knew that my radiation had been directed at some lymph nodes in the area of the capsular penetration so it was no surprise things bogged down in that area. As Sue explained, the lymph system travels through the groin area and injury in that area can basically shut it down. That's what happened with me and she was able to get it going. Actually, she said that if it was too damaged to rescue, she would find an alternate route for it. Wonders! So...my word to everyone is this: If you have swollen legs, ankles, feet or any other part of the body following treatment, don't just sit around and wait for it to go down on its own. There are specialists who know how to deal with that. As Sue told me, if I did nothing about it, I would suffer harm because lymph is carrying cellular waste out and bringing nutrients in. It has been quite a journey and the road ahead is unknown. Marianne and I thank Dr. Mehlhaff and the Man to Man gang for their support and companionship on our journey. You all are awesome! June 2011 update: My latest PSA taken this month was still <0.008. I can happily deal with such boring reports for years to come. Now for a short June 2012 update: My Prostate Cancer Journey took place when men were being "offered" PSA tests at age 50, no questions asked. Unfortunately, times have changed due to a U.S. Preventive Services Task Force (USPSTF) recommendation on PSA testing. On May 21, 2012, this task force recommended, specifically to primary care physicians, that men no longer be tested for early detection of prostate cancer, saying there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits. The American Academy of Family Physicians (AAFP) then announced on May 22, 2012 that, based on the final recommendation from the USPSTF, it was also recommending against performing prostate-specific antigen (PSA)-based screening for prostate cancer in asymptomatic men. These recommendations were made by medical people who neither diagnose nor treat prostate cancer. They seem to think that men would rather chance dying from prostate cancer (by waiting until symptoms arise to be tested) than deal with "potential" incontinence and impotence from probable life-saving treatment (due to testing for early detection). They have not walked in my shoes! Since May 2002, I have facilitated what is now the Us TOO Florence Prostate Cancer Education/Support Group and have seen up close and personal the difference between early and late detection of prostate cancer. Any prostate cancer diagnosis is traumatic, but there is one huge difference between hearing a urologist say you can be treated and likely cured versus you can be treated, but no cure is possible. Our group has been attended by 152 men with prostate cancer, 16 of whom have died from the disease and eight to 10 more who are dealing with advanced disease. For the last seven-plus years, urologist Dr. Bryan Mehlhaff has attended our meetings, keeping us up-to-date with prostate cancer treatments and answering our personal questions. This is where the "rubber hits the road," NOT in some office looking at flawed statistics. I have very high regard for the professional concern and care we receive from Dr. Mehlhaff. I am always struck by his responses to questions from our group - thoughtful, honest and compassionate. Now, don't get me wrong...if a man decides it is better not to know if anything is going on with his prostate unless or until symptoms arise, that is his choice to make and I respect that. For those men who see value in early detection IF they should ever get prostate cancer and could use information and support, here's the good news: Us TOO Florence is NOT going away! We prostate cancer survivors, along with Dr. Mehlhaff at our evening meetings and Dr. Doug Hoff at our lunch meetings, will continue to promote the personal and honest pros and cons of early detection and treatment. We are, as the Us TOO motto says, "Someone to talk to...who understands." |
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