My Journey with Prostate Cancer and Active Surveillance
I was born in 1944 in Iceland. I have a business degree from the University of Iceland, and a Master’s degree in marketing and sales from the University of Lancaster, in the U.K. Before retiring, I co-founded and directed an herbal supplements company, SagaMedica ehf. My wife Elin and I have been married for 51 years, and have 4 children (3 living) and 8 grandchildren. In retirement, my wife and I are enjoying the best years of our lives.
I was diagnosed with prostate cancer in February 2005, with PSA 10, Gleason 6(3+3) and a second opinion 7(3+4). My markers allowed me to choose Active Surveillance instead of a treatment – against the doctor’s advice – as Active Surveillance was not widely acknowledged at that time. Now, 14 years later, I am still doing fine.
My PSA has been fluctuating, most likely from other causes than PC, and is today 7-8. I had two biopsies in the early part of my diagnosis, but have since been under surveillance by MRI in both Holland and Iceland. I have not been cured of PC, but have been able to keep the cancer under control and maintain my quality of life.
I have been making presentations in Iceland about PC, including media appearances. Currently, I am making presentations about how to be diagnosed and live with prostate cancer. These discussions include “The 10 Questions Men Who Have Been Diagnosed with PC Need Answered,” which I authored. In 2014, I also began to work with Sigurdur Skulasaon to establish what is believed to be the first internationally independent Active Surveillance Support Group.
What is your greatest personal or medical accomplishment achieved during your AS journey?
In my opinion, my greatest personal accomplishment was to undertake extensive research on my own, followed by choosing AS.
When I was diagnosed with PC at the age of 61, my doctors strongly recommended that I undergo traditional treatment. Surgery was at the top of the list. It is understandable that this treatment was recommended, as concepts like Active Surveillance (AS) were only in the early stages of acceptance.
The AS theories of Dr. Klotz (Canada) started to gain recognition in 2005, 8 years after he started research in this field. I did not realize until much later, after doing my own research, that my early markers (PSA10 – G6[3+3]) made me eligible for AS. I did not realize until years later, when the second opinion showed G7(3+4), that I was taking a moderate risk.
14 years ago, there were very few men who chose the AS route. It is believed that 10 years ago, about 10% of men diagnosed with PC chose AS. Today, about 50% of men are believed to choose AS, and that figure is closer to 90% in Canada and Sweden.
Is there a misconception that you had originally believed about PCa or AS that you have since debunked?
The main argument my urologists and doctors made was that I was taking a great risk, which could be life-threatening. My previous urologist went so far as to say that he freed himself from all responsibility if anything went wrong, because he had warned me and my wife about the possible consequences refusing a traditional treatment. I also went to Nijmegen, in Holland, to have the results from Iceland retested. These tests showed more favorable results. I realized that the responsibility to decide on a treatment plan was mine, and not the urologist’s.
Can you describe one lifestyle change that has helped you effectively follow AS?
Two important lifestyle changes affected me after being diagnosed with PC and selecting AS – the first being the composition of the food my wife and I consume. We select healthier foods, and only consume fruit in the mornings until lunch time. We strongly believe in what we are doing, even if there are limited scientific and clinical evidence to support our approach.
Secondly, my perspective on life changed after I was diagnosed with PC. My wife and I have a greater appreciation for life. Our approach is to collect as many happy moments as possible by doing things today, which we previously would have postponed until tomorrow.
How did your family or friends respond to the news about your PCa diagnosis, and your decision to follow AS?
14 years ago, my PC diagnosis was considered a death sentence. For two years, my wife and I only told our closest family members about my diagnosis. Death was a possibility, and we did not want to worry anyone else.
After those two years, I made my first PC presentation. In that presentation, AS was on the bottom of the list of treatment options. No one knew what AS included, so those who did comment thought I was taking a great risk.
Do you have a motto or quote that gives you inspiration?
Icelandic: “Söfnum ánægjustundum í lífinu.” English: “Collect moments of pleasure in life.”