The Informed Medical Decision Foundation’s patient perspectives team has spoken with hundreds of individuals about their health care decision-making experiences. Today’s guest blogger is Cary A. who agreed to share how he came to be make a very personal choice about how to address his prostate cancer.
In June 2008, as part of my annual physical at age 61, my physician gave me a digital rectal exam. He felt a lump on my prostate that he felt needed further evaluation so he referred me to an urologist. The urologist performed a biopsy, which showed prostate cancer in two out of the twelve cores tested, with 10% cancer in each core and a Gleason score of 6. A Gleason 6 indicates a slow growing cancer. The urologist told me that I needed treatment and that since I was relatively young and healthy my choice could be surgery or radiation. His thinking was not whether I needed to be treated in the first place, but only what treatment would be best. He suggested I see a surgeon and radiologist to decide.
When I went to the hospital to see the surgeon and radiologist, I saw a poster about a prostate cancer support group. I thought the group could help me decide which course of action to take. I attended several meetings of the group and learned about the high risk of incontinence and erectile dysfunction with treatment. But I also learned that there was still another way to deal with prostate cancer, and that was to delay treatment through active surveillance. This doesn’t mean that you ignore treatment. It means that you have periodic exams and take an active role with your physician to decide when and if to treat the cancer at all.
It’s been almost five years since I’ve been on active surveillance. I’ve had two more biopsies since 2008. The biopsies showed cancer in other areas of my prostate but in only one case was this more than 10%, and in every case with a Gleason score of 6. I have periodic exams with my oncologist. He gives me the facts and leaves the decision for treatment up to me. I continue to attend the cancer support group meetings and have joined a subgroup where all of us are on active surveillance. We exchange information on the latest findings on prostate cancer treatment and help each other with our decision to continue active surveillance.
I make my own decisions in many areas of my life. For example, I make my own investment decisions and have always filed my own taxes. I gather information and do the research before I decide. I feel the same about my own health. I don’t usually take medications. I stay active and watch my diet. I have met other men with cancer diagnoses similar to mine. Some men feel that they need to do something – anything when they hear the word cancer. They look to the “health experts.” For these men it comes down to finding the right expert. I considered the strong probability of erectile dysfunction and incontinence, and read further that there is no guarantee of cure with treatment. Many prominent doctors say that about 40 – 50% percent of the men who were initially treated with surgery, and had negative margins, will have a rising PSA within 4 or 5 years. This same recurrence rate is also true of men who had radiation therapy. In addition, some physicians feel that studies have not proven that survival rates are greater for men treated with slow growing cancer than they are for comparable men who had no treatment at all.
I want to tell men that there are alternatives; that they too are experts in knowing their own bodies, and with some research they can find out what works best for them. And it’s not always treatment.