Skip to main content

a compass at sunset.

Share this:

Finding Your Own Inner Compass

Sixteen years ago, I was diagnosed with Gleason 6 prostate cancer(PCa) and against the advice of five medical professionals, including my wife, chose not to have intervention. I was fortunate because my urologist knew me, and while he recommended that I have a radical prostatectomy (RP), “Mark, I know you well enough to know that you won’t do this.”, he said. He gave me the name of a patient who had chosen not to have an intervention. That person gave me so 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.

We see a medical system that often over treats low risk prostate cancer (PCa), leaving men a shadow of their former selves. A negative quality of life occurs by becoming sexually impotent, wearing diapers for urinary incontinence contributing to feelings of anxiety and depression due to the failure to provide men with information and knowledge about the side effects of treatment. The system is struggling to change and 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 countries that rank higher than us. Both patients and physicians are victims in a broken system.

At ASPI, our purpose is to help more men avoid the tragedy of over treatment 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. Active Surveillance has evolved at warp speed in the 16 yrs since I was diagnosed.

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 PCa. Many, including my nurse practitioner wife, were uncomfortable with my decision not to have intervention. Nevertheless, we in the end are the ones who have to live with our decisions.

In my case 16 years 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. I did the research, made my decision and took action accordingly.

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 15 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 rectum to get tissue samples, there were risks involved. They use powerful antibiotics to counter that, but does that then compromise future antibiotic use? Concern about sepsis has grown tremendously since that time and is partly responsible for increased use of monitoring with MRI’s.

My next battle was with the use of gadolinium, a contrast agent, to monitor prostate cancer. Over five years ago I refused the contrast based on some research regarding possible heavy metal deposits in the brain. The prevailing thought at the time was that after the MRI a person could drink a quart of water and flush out the contrast. One study indicated that it can remain in the system for nine years. I insisted on a non-contrast MRI with much objection from the radiologist. My urologist said the image was fine. Again, the refusal was based on “scientific intuition.” What have I learned with from these battles that involved decisions on the need for an RP, the pressure to get Biopsies, and the use of harmful contrast? They have taught me is that we must stand up for ourselves.

We are the CEOs of our health care. You are in charge of your health, and know all of the complexities of who you are and as such you are the only one that can make optimal decisions for you. That fact makes it absolutely imperative that you acquire the knowledge and information about your cancer so that you can have a factual informed conversation with your urologist and All of your medical providers. This is where our team at ASPI can help you become the CEO of your health, physical and emotional.

Those of us who have taken different paths, feel it is our duty to present the current science on issues like biopsies, gadolinium etc. One may choose to take the risks associated, but at least one will be informed. Lack of informed decision making in the medical industry is rampant. Informed and shared decision making is challenging as some men may be overwhelmed by the information. However, that is not sound medical justification for withholding the information. The ASPI Network of Support helps men navigate the complexities associated with the amount of information about PCa that is available today.

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. I did it and you can too! You will find peace there.

Mark Lichty – Updated 7/2021