In early 2001 I went to my urologist for a routine follow-up of benign prostate urinary symptoms. Although he initially told me that the DRE (Digital Rectal Examination) was normal, he suggested a biopsy after I told him that my brother (16 years older than me) had been diagnosed with prostate cancer (Gleason 3+3). He said he felt that the DRE was "equivocal" (no sign of a nodule, but firmer than most normal prostates).
The biopsy revealed a minute (under 1% cancerous) tissue in one of the biopsy samples taken.
He strongly recommended radical prostatectomy and gave me the names of two Johns Hopkins urologists to call. I set up an appointment with H. Ballentine Carter. When I saw Dr. Carter, I fully expected to be scheduled for surgery, but he told me that I was a good candidate for active surveillance (AS), which would consist of an annual biopsy and semi-annual PSA and DRE. He also told me I should take my time before making a decision. There was no urgency to decide quickly.
I am writing this in April 2011, exactly 10 years since I first saw Dr. Carter and agreed to enter his AS group.
I have had a biopsy each year since 2001. All of them indicated that my case continues to be "low risk" prostate cancer, meaning that my Gleason score is still 3+3, the semi-annual DREs have all been normal. Obviously, my local urologist's "equivocal" DRE was a stretch. It was normal then and it is normal now.
I do not regret having been subjected to an unnecessary biopsy. Maybe I'm crazy, but I was glad to receive the early warning and the close surveillance that followed. I have been comfortable with the knowledge that I have prostate cancer. Apparently, many men cannot tolerate the idea of living with prostate cancer, and want to have it treated ASAP. I'm not one of them. I did my research and came to the conclusion that I could live with an 85% likelihood of not dying from prostate cancer while under AS, as compared with 90% if I have it treated. That was a no brainer, especially when all forms of treatment carry a 100% guarantee of significant side effects and lower quality of life.
I don't know whether dietary changes, supplements I've taken, and my exercise routine have helped keep my prostate cancer from growing to the point of endangering me, but they certainly haven't hurt. My PSA has been between 1.0 and 2.3 since I started AS. My most recent was 2.0.
Some people ask why it is necessary to have a biopsy each year. The answer is that it is not necessary. It just happens to be the highly conservative protocol at Johns Hopkins. I accept the importance of biopsies, but I don't think they need to be more often than every 2, or maybe 3 years. The Gleason score is still the only reliable way to measure the aggressiveness of the cancer, and a biopsy is the only way to get a Gleason score. I believe that this will change in the foreseeable future, but the research hasn't knocked biopsies out of the box yet.
The bottom line: prostate cancer treatment is probably not needed for the vast majority of men diagnosed with early stage, low volume Gleason 3+3 cancer. Some believe this also applies to 3+4, but there is more room for worry when the score is above 3+3.
I'll be happy to help if you are looking for input to your own decisions.
Best wishes.
As of June 1, 2012, I am continuing under active surveillance at Johns Hopkins. Last fall, I had a trans-rectal MRI there, which did not find cancer outside of the prostate. With organ-confined disease confirmed, and the concurrence of Dr. Carter, I decided to skip the 2011 annual biopsy. I will be 74 in July, and Johns Hopkins' policy is that AS biopsies end at age 75. After what will be my last biopsy one month later (August, 2012), Dr. Carter will continue to manage my case.
In light of the absence of much progress finding treatments that are free of difficult to accept side effects over the 11 years since my initial diagnosis, I'm not optimistic that there will be a major break-through anytime soon, so I will be quite happy to add my name to the legions of men with prostate cancer who eventually die with the disease, not of the disease. In the meantime, all the relevant aspects of my quality of life have remained intact since I chose active surveillance, and I expect that they will continue to be intact as long as I maintain my vitality.
Having turned 74, my August 2012 biopsy (the 11th since initial diagnosis in 2001) was supposed to be my last; the Johns Hopkins Active Surveillance program stops biopsies at age 75. Unfortunately, one of the 14 cores taken from the biopsy contained Gleason 3+4 (20%). The JH AS program considers that a basis for recommending ending AS and undergoing treatment of the prostate cancer (in my case, surgery or external beam radiation). This turn of events motivated me to update my knowledge of focal therapy options. My research uncovered MR-guided Laser Therapy for PCa. Initial work had been done in Toronto, Canada and reported on. The work suggested that side effects from focal laser therapy were negligible and short-term, and although there is no way to know at this time its effectiveness in wiping out the PCa, it could be a promising middle road between radical treatments with likely reduced quality of life, and continuing to do nothing.
Other centers are now carrying the focal laser treatment research forward. I was pleasantly surprised to find that a clinical trial is under way at the National Cancer Institute, NIH Clinical Center less than 45 minutes from my home. I applied for entry into the clinical trial and am now in the process of being evaluated. Having met the initial eligibility criteria, I underwent an MRI with endo-rectal coil last week and am now awaiting the report. Assuming I get the green light to proceed to the next step, I will undergo another biopsy, after which I will receive the focal laser treatment and then be followed for three years.
I underwent a fusion biopsy at NIH last December. (The image from my MRI was electronically fused with the real-time ultrasound image during the biopsy, to refine the targeting of the biopsy.) One would expect that this advanced technique would find the cancer that had been found on 10 previous ultrasound-guided biopsies at Johns Hopkins. To my great surprise, none of the cores taken via the fusion biopsy were cancerous. Under the NIH protocol, this meant that I would not be recommended for treatment (focal or radical). I was advised to continue with AS and return for a repeat MRI in November 2013. The result of that MRI was consistent with last year's. I am now 75 years old and, were it not for the fact that my health is well above average, there would probably have been a recommendation that I discontinue active surveillance because I would be more likely to die "with" prostate cancer than "of" prostate cancer. Instead, my NIH-based urologist declared me "too healthy," to consider ending AS. I am scheduled for another biopsy there in February 2014. Strange as it may sound, I'm enjoying the ride.
Not only did the February 2014 biopsy at NIH find prostate cancer, it found Gleason 8 for the first time. As a consequence, my case became "high risk, locally advanced," thereby removing me from potential eligibility for the clinical trial that led me to NIH in the first place. I was advised that the recommended treatment options were radical prostatectomy or external beam radiation with pre- and post-treatment androgen deprivation therapy (ADT). I chose surgery. I had DaVinci robot-assisted laparoscopic surgery at Johns Hopkins on April 29, 2014. There were no positive surgical margins, and the report of the pathology in the removed prostate (surgical Gleason score) downgraded my case to Gleason 3+4=7 (the amount of Gleason pattern 5 that was found was too little to warrant its use as the secondary pattern, so it was not used to calculate the secondary number for the final Gleason score). In other words, I had organ-confined disease, with a relatively low total volume of cancer consisting of primary Gleason pattern 3, secondary Gleason 4, and an insignificant amount of Gleason 5 found in one area.
My first post-op PSA was 0. Based on the specifics of my case, the Han post-op tables of the probability of biochemical recurrence (detectable PSA) show the following: 3 years after surgery: 3%, 5 years after surgery: 4%, 7 years after surgery: 6%, 10 years after surgery: 8%.
As for the surgical experience, it was easy. I had very little pain, and although I was 75 years old at the time, I was in excellent physical condition, so my surgeon declared me ready to go home on day 2. The catheter was removed on schedule (10th day post-op). There were no complications. I am currently 4 months post-op and not yet continent. It's annoying to use pads, but it doesn't keep me from enjoying life. On the other hand, it's keeping me from even thinking about sexual function at this point.
I am now half way to my 78th birthday, 20 months since my prostate removal surgery. My PSA has remained 0, but urinary leakage and E.D. continue to be problems. Given my age and the fact that one of the two nerve bundles could not be preserved during the surgery (possibly as a consequence of the adhesions that may have developed from the numerous biopsies that were done during my 13 years of active surveillance), I knew that my chances of regaining erectile function were low. Injection therapy is not fun, so I haven't given it much effort. I am disappointed that I have been unable to regain urinary continence. I can get by with one pad per 24 hours on the rare days that I don't do a lot of errands, work out at the gym or walk/stand for long periods of time. On most days, I can get by with two pads per 24 hours. Once in a while, I need three. I continue to enjoy an active life with my wife and grown family, eat a healthy diet, and spend about 45 minutes to an hour almost every day at a gym or a Pilates studio trying to keep my biological age as much below my chronological age as possible. So far, so good!
Other than slightly less urine leakage, nothing else has changed. Most of my days include 2-3 hours of vigorous activity (more than a mile of fast walking, an hour of Pilates, and an hour of cardio at the gym). I can get by with two urine guards (pads) on those days. On the few light activity days (about one a week), I use one guard. My general health is excellent! Life is good!
Alive and kicking! Continuing my healthy and active lifestyle. My many hours of activity every day (errands, exercise walks, working out at the gym, Pilates classes, etc.) increase urine leakage over what it would be if I were sedentary, but wearing a pad is a small price to pay for staying as healthy as I can for as long as I can. Research about the success of surgery to fix urinary leakage suggests that repeat procedures often are needed after about 5 years. I may look into it further, but right now I'm living with the leaking. My prostatectomy was done when I was 75. The likelihood of regaining full continence at that age is close to zero, so I can't get worked up about it.
The only thing that changed since March 2018 is that I'm one year older. Every word that appears in that update applies to this one.
Nothing has changed, except the COVID-19 pandemic has ruined my physical exercise routine. No Pilates classes, gym workouts, or lap swimming.
General health is excellent. I swim laps, over a mile every other day. I eat healthy and enjoy life.
I'm 86 now and in excellent health. I swim laps at the pool regularly. It's a great form of exercise, and the bonus for those of us who leak urine is obvious.
Harry's e-mail address is: hsg727 AT gmail.com (replace "AT" with "@")
