Twelve Years on Active Surveillance
Mark Lichty // Prostate cancer patient and support group leader
“I am currently on my 12th year of active surveillance (AS) and I am hoping that my journey through this difficult process may help others avoid over-treatment. ”
Back in 1996, I watched my steadfast father’s quality-of-life crumble as he descended into the world of prostate cancer (PC). Treatments (castration, radiation, etc.) rendered a once proud man a shadow of his former self, which was the result of gruesome side effects.
Consequently, when I was diagnosed in 2005 at the age of 55, his experience inspired me to ignore the advice of four medical professionals (and my wife) to have a radical prostatectomy (RP), which was the gold standard and acceptable protocol at the time. Not recommending RP would have exposed any doctor to the risk of lawsuits. This understandable fear of lawsuits (and some other considerations) contaminates the medical system to this day. However, patients’ awareness of this fear among doctors encourages patients to take charge of the decision making.
From the beginning, I was fortunate to have a urologist who knew that I marched to the beat of a different drum. Although his recommendation was to have a RP, he referred me to another physician who suggested an alternate route. I chose to follow what was then called a “watchful waiting” program, which seemed like an unfortunate choice of words “waiting to die?"
A few years later, the term “active surveillance” (AS) was then introduced, which suggested a more proactive approach. It called for minimal intervention and maximal surveillance. When I started on AS, only men diagnosed with Gleason 6 were on the protocol. However, now physicians acknowledge that some men with Gleason 7 may also be good candidates.
I recalled one of my caring doctors emailing me a couple of years after my diagnosis saying: “Mark, I just lost a patient to PC, you need intervention.” Eight years later, he emailed me again saying, “Your decision to go on AS was wise." The decision to not have inter-vention was daunting. Many people around me thought I was a bit crazed. I learned from my dad’s journey what I did NOT want, but there was absolutely no path to what I DID want. This graph may help one better adjust to the notion of entering the AS arena: (figure 1).
Often, there was—and still is—a failure on the part of the medical industry to provide adequate information regarding side effects of treatments, either with procedures or with pharmaceutical drugs. Certainly, medical professionals have a responsibility to take the time to go over these pertinent pieces of information. Today, with the advent of the internet and other resources, the responsibility of obtaining this information is also shared with the patient. We need to research independently, to be the captain of our fate.
I commenced my journey by trying a host of remedies including a vegetarian diet, a shaman, various medicinal mushrooms, Essiac, and others. I believe the vegetarian diet, mostly uncooked and preferably local produce, seems to be a positive factor. As a “side effect” of my non-interventionist approach, I have been sick only twice in the past twelve years. On my last MRI, cancer was undetectable. However, my PSA had risen to 8, hence, there is some concern about that MRI reading.
Exercise is as important as diet. My personal trainer reminds me of this constantly. I do yoga but not enough aerobic exercise. (I probably spend way too much time at/on the computer writing articles like this!) And weight bearing exercise needs to be incorporated as well.
Unfortunately, lifestyle changes alone are not enough. Creating a community of support is critical. Not finding any such support on the East Coast where I live, I decided to attend the annual Prostate Cancer Research Institute’s (PCRI) conference on the West Coast. After attending several of their conferences (about six years ago) we started the Active Surveillance Support Group and added it to the agenda. This support group, the friends that I have met, and the unique knowledge shared at these conferences, have all given me a foundation to stay on my path.
It is interesting to see how the conferences have evolved over time. During the past ten years, the epidemic of over-treatment has been exposed. The choice of Active Surveillance is dramatically increasing. Mark Scholz, MD, in his book Invasion of the Prostate Snatchers, has done much to expose the over-treatment issue. As a result of progress combating over-treatment, the conference agenda has evolved from information mainly on treatment choices, to include an emphasis on less invasive, state-of-the-art monitoring.
MRI is an important tool in the monitoring of prostate cancer. However, It turns out that its use has some decision factors. My surface MRI results came back “ambiguous." Therefore, a biopsy was recommended. I refused. I took those imaging results to the PCRI, and discussed them with an imaging ex-pert at the conference. He agreed that I should wait another year, and then have a repeat MRI. I have found that when I am on the fence about medical deci-sions, abstinence works best for me. I did have a follow-up MRI, and they could not find any cancer. However, due to my rising PSA, my physician suggested I have another PSA test in six months.
While monitoring with MRI is gain-ing popularity, it still may be a concern when choosing this imaging as it may not be covered by insurance in all situations. One possible option is to ask your physician’s office to request coverage authorization directly from the insurer.
Various monitoring methods have emerged including blood, urine, and tissue. For a time, I was interested in PCa3 urine testing, but that did not seem to get traction. Another urine test, Select MDx, seems to be gaining some attention. Blood tests include the Prostate Health Index (PHI) and the 4k test. Another promising tool added to the landscape is genomic testing, such as Polaris, Oncotype DX, and Decipher. We have certainly made some headway in PC by way of diagnosis and treatment. Back when I was first diagnosed, I would hear stories of folks who had aggressive cancers who, sadly, were dead within a few years. How could I know then that wasn’t to be me? I couldn’t, as there were just no good tools available. Now we have genomic testing which appears promising to address concerns about the aggressiveness of PC. And as for treatment, one patient (after 18 years of Active Surveillance) finally decided on treatment with Focal Laser Ablation—a procedure that was not available at the time of his diagnosis. Also, the risks and side effects from treatments are much lower now than they were back then.
One of the more interesting evolutions around the PC journey is how our concerns have changed. Twelve years ago, it was all about: How long do I have to live? Do I have an aggressive form of PC?
Now it has become: Where is the next bathroom?! Suddenly, urination seems to have taken on new significance in our lives. BPH is epidemic, especially for older males. We confront levels of urgency unknown in our youth. I do not take Avodart, as I was never quite comfortable with it. Therefore, I choose to urinate a couple of times per night in its stead. Unfortunately, on one occasion when waking then heading to the bath-room, I nearly passed out. It may have been low blood pressure. Therefore, the choice to have a bedpan by the bedside was thought to be both a safer and less disruptive solution for my wife and I.
While we are on the subject of urination, I will share my story about the time this function stopped working. I had no warning. It just stopped. I went to the emergency room after nearly 24 hours, thinking they would catheterize me. They didn’t. They sent me home. I am baffled by my own complacency here. Why didn’t I argue with them? I went against the advice of four med-ical professionals when they recommended an RP. Why would I not insist on a simple catheter? Sometimes, we do let our guard down. In any event, I suffered through the night, went to my urologist in the morning, dancing in his office until he could see me to relieve the pressure. Talk about relief! I wore the catheter while I researched alternative therapies, and finally decided on green laser over TURP. I haven’t regretted it. Six years later, all seems to still be working.
Cancer is a “teaching disease.” It teaches the patient that their life may be out of control and that they may have major issues that MUST be addressed. Cancer is also a teaching disease for the medical profession. Old, arrogant attitudes are fading. Much of the resistance to new ideas is diminishing.
For those recently diagnosed, panic easily sets in. However, as the weeks pass on to months, and the months to years, the blessings do unfold. Prostate cancer has opened the doors to edu-cation, information, and friendships I would otherwise never have known.
My suggestion is to take your time. Do your own research. Go to the PCRI web-site. Get involved with support groups like those offered by UsTOO. Don’t start looking to others for decisions that you need to make on your own; you are the one who must live with the consequences. Trust your own instincts.
I believe that your instincts are not your own, but come from a divine source beyond you; a source available to all whether Hindu, Christian, or Muslim, etc. Yes, It can be a blessing, not a curse.
About Mark Lichty:
Mark, an attorney and retired CEO, has been following an active surveillance program for ten years. He has facilitated this support group the past five years and has participated in a local UsTOO group. He also communicates regularly with a small group of men who are pur-suing a similar protocol to share ideas for “lifestyle modification”.