Thirteen years ago, I was diagnosed with Gleason 6 prostate cancer (PC) and against the advice of five medical professionals, including my wife, chose not to have an intervention. I was fortunate because my urologist knew me, and while he recommended that I have a radical prostatectomy (RP), he said, “Mark, I know you well enough to know that you won’t do this.” He gave me the name of a patient who had chosen not to have an intervention. That person gave me much hope and launched me on the most fascinating journey of my life–a journey at times wrenchingly stressful, uncertain, but in the end rich. I found I had to make my decisions without clear information provided by the medical system regarding the side effects of the recommended intervention. It is important to know too that I am just a simple farm boy from Bucks County Pa, maybe not that different from you.
This journey has led me to better understand the tremendous forces impacting a medical system comprised of well-meaning doctors whose desire to provide the best care is contaminated by conflicts of interest that at times deprive them of their ability to function objectively. They are good people navigating in a broken medical system. I have the advantage of not worrying about my suing myself if I screw up, or of possible lost revenue. Hence, the lens of my inner compass is very clear.
Now, a group of men recognizing the flaws in the system has chosen to organize a conference on active surveillance (AS). We choose to call our journey proactive surveillance, a step beyond active surveillance. We see a medical system that often overtreats low-risk prostate cancer (PC), leaving men a shadow of their former selves, often sexually impotent and in diapers for urinary incontinence. We see a system that often fails to provide adequate notice about side effects of treatment. The system is struggling to change, but change is slow. According to the World Health Organization, we rank 37th in the world in our health care delivery, while spending twice as much as counties that rank higher than us. Both patients and physicians are victims in a broken system.
Our hope is that we may help more men avoid the tragedy of overtreatment and find ways to be comfortable on AS–learning to live with cancer, not rush to have it removed. We are confident this is achievable. We have created a 501c3 nonprofit, ASPI (Active Surveillance Patients International) to further this work.
Originally, we only selected men on AS to be on our board, but some of our members who had an intervention and were devastated insisted on participating. They felt they needed to support this process to help the next generation of prostate cancer patients.
Our planning team members have each had to carve their own path against the advice of the medical system. Eventually, AS became more acceptable for non-aggressive prostate cancer, and confirmed our decision. Unfortunately, many folks are unwilling to take on these battles. For me, as for the others, it has been hard. There was no clear path. In my case, my father, who has been my inspiration, died of PC. Many, including my nurse practitioner wife, felt I was perhaps off the edge. Nevertheless, we, in the end, we are the ones who have to live with our decisions.
Planning this conference has been an interesting process as we have reputable doctors on the planning team. They wanted to wait for the settled science before a speaker was invited. But patients have not been able to wait for the settled science. As we saw with cigarettes, asbestos, glysophates etc. waiting for settled science can be an unappealing option. In my case, 13 yrs ago, the gold standard, or settled science, was a RP. I struggled with my decision to refuse that for nearly a year. Why would I know more than the professionals? Never was I informed of the possible side effects from a radical prostatectomy, including incontinence erectile dysfunction etc. I did the research and drew my own conclusions, something I call” scientific intuition”–science, but with a big dose of intuition.
My next battle was with the doctors’ suggestion that I monitor with biopsies. I was able to get into a program with the University of California, San Francisco, where I had MRIs. Along the way, I refused a few biopsies. I have not had one for over 12 years due in part to my concern about sepsis —again, “scientific intuition.” No one warned me of this risk. It seemed logical to me that if you went through the intestine wall to get samples, there were risks involved. They use powerful antibiotics to counter that, but does that than compromise future antibiotic use? Concern about sepsis has grown tremendously since that time and is partly responsible for the migration to MRI’s.
My current battle is with the use of gadolinium, a contrast agent, to monitor prostate cancer and a cyst. I refused the contrast based on some research regarding possible heavy metal deposits in the brain. I insisted on a non-contrast MRI, and my urologist said the image was fine. Again, the refusal was based on “scientific intuition.”
With regard to the gadolinium, having owned businesses driven by the quality of customer service helps to inform my quality expectations. I have sent three emails asking for an alternative contrast. One would have hoped that the response would have been, “thank you, and we are researching your concerns.” The response has been gadolinium is fine. The battle goes on. We don’t want to fight the system. We are forced to. Yes, there is a crisis in the overtreatment of prostate cancer, but there is also a huge crisis in listening and quality of customer service in the health care system. That crisis exists no matter what your disease. Please share this with your loved ones as they likely can identify,.
Why I write this now is that our planning team will be presenting the best-settled science that we possibly can. Those of us who have taken different paths feel it is our duty to present the current science on issues like gadolinium whether settled or unsettled. We believe that those attending our conference will have the ability to research and make their own decisions. They may choose to take the risks associated, with gadolinium or not, but at least they will be informed.
Lack of informed consent in the medical industry is rampant. Informed consent is challenging as some men may be overwhelmed by the information, but is that an excuse for withholding information? At our ASPI conference, we want to do what we can to help you to get the most current information. Each of us forged our own path, but we haven’t looked back. We are awed by the progress in AS, and are hopeful, and wish to share that hope with you. Hope, persistence and courage have carried us through, and it can carry you as well. Connect with your own inner compass.
Please sign up on our website, and Facebook to join us. We need your thoughts in creating the future of AS.
Mark Lichty – 8/2018