The Value of Prostate Cancer Support Groups for Treatment Decisions
BY KENT NAMOR
In this blog, PCRI presents an article from guest contributor and prostate cancer survivor, Kent Namor.
When I was diagnosed with prostate cancer in the summer of 2006, my initial reaction was probably typical of most men—I felt afraid and uncertain. After being summoned to my urologist’s office where he laid out my treatment options, I decided that I had to verify everything he said and leave no stone unturned in an attempt to find a way to come to grips with what felt like my new grim reality. The very first thing I did was look for help from other men who faced this problem. In particular, I was looking for someone as close to me as possible in terms of age, lifestyle, and overall health. I worked out regularly my entire adult life, was in excellent physical shape, and thought I was knowledgeable when it came to diet. I also had no other medical conditions that could factor into my decision making.
From an internet search, I found that my urologist’s affiliated hospital had a prostate cancer support group, so the very next week I attended my first monthly meeting. I listened intently to everyone’s story and was disheartened to learn that the after- math of their treatments left them less than happy. The men in this group had all been treated with surgery. Robotic surgery was just starting to make inroads in that area, with all but one or two of the urologists making the transition from the full open laparoscopic prostatectomy.
Shortly thereafter, I started attending another monthly support group affiliated with a hospital in a nearby Chicago suburb. The men were different, but their stories were similarly discouraging. The men in this group had also been treated primarily with surgery, although some had received radiation as well.
It wasn’t until I found a third monthly support group in another Chicago suburb that I noticed a difference. The men here who had received treatment had a different outlook. They were more optimistic after having been treated. There were no horror stories of permanent side effects, they were well-informed about what to expect post-treatment, and most notably, they had no regrets about the treatment decisions. The men in this group that had received treatment, all had brachytherapy.
The deal breaker for me was the incontinence issue. I had resigned myself to the possibility of erectile dysfunction issues, but the one thing I felt I couldn’t live with was incontinence in general and wearing pads. The only thing I’ve had to deal with is occasional frequency and urgency, and that’s fairly easy to deal with. The sexual function consequences from surgery are far more significant and are, from the accounts of many patients, both physically and psychologically devastating. Perhaps I’m just lucky, but I’ve suffered no downside in sexual function.
In addition to attending these three monthly sup- port meetings, I spent many summer nights after work and on the weekends scouring the internet for all the information I could possibly find on the subject. I read just about every book I could find on prostate cancer (11 total). In addition to making appointments with the top urologists who had the most surgery experience in my own backyard here in Chicago, I crisscrossed the entire country visiting one of the top surgeons (the inventor of the nerve sparing procedure) and radiation oncologists in the United States.
I had the time to attend these meetings in the ensuing months as I was fortunate that my Gleason score was 6, and my highest PSA was 2.7, so I knew I had a low-risk disease, and although my urologist wanted me to commit to surgery roughly two months after my prostate had healed from the biopsy, from everything I had read on the internet, I knew time was on my side. Also, it didn’t make sense to me that a man suddenly develops prostate cancer overnight. It had to take many years to reach this condition, so it didn’t seem like an immediate decision had to be made without investigating all the options.
It took me fifteen months to finally make my treatment decision. In the interim, I had also entered a formal active surveillance program at a leading hospital on the east coast, but when my biopsy revealed more cores and a slightly higher percentage of cancer in each, I was forced out and had to make a treatment decision.
I believe it’s true that every man’s prostate cancer is different, and although I never found a man whose particulars were very similar to mine, I placed myself on the spectrum of all the men I had come across who ultimately came out on the other side relatively unscathed, and they did so by opting out of surgery and electing brachytherapy. It’s almost twelve years since I was treated, and I’m happy to say I avoided the possible complications of surgery and still have excellent sexual function without any aids.
I still attend the two monthly support groups. My takeaway from all of this is that there is much to be gained from your fellow prostate cancer patients and this can complement the information from your doctor. You can have a much better idea of what to expect post treatment, and you’ll be able to factor in the significance of quality of life issues.