By Bren Witt, Executive Director, Okanagan Prostate Resource Centre
"I never thought prostate cancer would be a reality for me — until I was diagnosed in 1995, at the age of 53. I had my first PSA blood test in 1992 and my score was 7.0 ng/mL. My urologist advised me to have regular PSA screening tests every six months until my levels were near or above 10. In 1994, my PSA reached 9.2. A TRUS (transrectal ultrasound) biopsy showed high-grade prostatic intraepithelial neoplasia (PIN), a noncancerous growth of the cells lining the internal and external surfaces of the prostate, which may increase the risk of developing prostate cancer. Again, I was advised to continue with PSA screening every six months. One year later, I was diagnosed with prostate cancer, with a PSA of 14.3, Gleason score of 5 and Stage T1C. I’ve been told that my Gleason score would probably be upgraded to a 6 or 7 today.
I realized how ignorant I was about this illness, the different treatment options and my chance for a healthy recovery. Following a radical prostatectomy six weeks after my diagnosis, I resolved to seek out support and educate myself.
In the spring of 1996, I connected with the local branch of the Canadian Cancer Society (CCS) to inquire about prostate cancer support groups. I was informed that no such group existed locally and was encouraged to start one. With so much still to understand about this illness and other male health issues, I was reluctant at first. But gradually, after reading books and getting information and advice from local urologists and others, I began to feel more comfortable with my understanding of this disease. With the encouragement of friends and family, I ran the first Kelowna prostate cancer support group meeting in November 1996.
Eighteen men and four women attended that meeting, and I’ve facilitated monthly meetings since then. Presently, between 70 and 100 people attend. I’m proud to say that several of the men, including myself, have the support of their partners, who also participate. Since starting these meetings, I’ve attended forums in Seattle (Washington), Calgary, Vancouver and Toronto and presentations by pharmaceutical company representatives on new products and treatments, and greatly appreciate the wealth of knowledge and resources I’ve been able to gather from these events. We regularly exchange this information — as well as what we learn from guest speakers at the support group meetings — in our monthly newsletter, started for members in August 1997. Today, it’s distributed to several urologists and other medical professionals and is available through Prostate Cancer Canada Network (PCCN) website www.prostatecancer.ca/pccn.aspx.
Men approached me to borrow the literature I had acquired in my personal library, and also had questions that they wanted to discuss with me privately. In addition, three local urologists informed me that their patients would benefit from having direct personal support and information outside of what they were able to provide in their practice. These experiences inspired me to establish a facility devoted to prostate cancer and men’s health.
On February 1, 2001 I was instrumental in opening the Okanagan Prostate Resource Centre Society. The centre is currently a registered BC Society and also a Registered Canadian Charity. My referrals come from urologists who practice in the same building, general practitioners, radiation oncologists from the BC Cancer Agency (BCCA) Centre for the Southern Interior located in Kelowna,
and word of mouth. Many men come directly here after receiving a diagnosis from their urologist. I might spend two or three hours with a man who has been newly diagnosed, allowing him time and freedom to express his concerns and ask questions (for example, how long they’ve likely had cancer, how will treatment affect their sexual function, their eligibility for nerve-sparing surgery etc.)
I’m not a doctor. I don’t diagnose or treat prostate cancer, but I can talk about different treatment options and possible side effects. Often, I can assist men in formulating questions to direct to their doctors, so they can become better informed of the specifics of their personal situation.
I have an excellent relationship with the local urologists as well as the radiation oncologists at the BCCA centre in Kelowna. Both are regular speakers at our support group.
My personal collection of books and videos has become the resource centre’s lending library. The pharmaceutical companies, Canadian Prostate Health Council, CPCN and CCS are generous donors of pamphlets, audio tapes, CD ROMs and other resources. Some interesting items I have at the centre include several models of the prostate and other urological medical appliances. I also have two blocks of my own prostate gland and some biopsy tissue samples. It may sound surprising, but men actually appreciate seeing these concrete examples of what’s causing the problems in their body. I’m able to help men educate themselves on issues not only pertaining to prostate cancer, but also to other important male health issues including benign prostatic hyperplasia (BPH), prostatitis, erectile dysfunction, incontinence and more.
The Okanagan Prostate Resource Centre isn’t the only information centre in Canada, but it’s unique in that it isn’t specifically connected with a urology office or treatment facility and isn’t staffed by nurses. Instead, yours truly is currently the sole employee. I’m happy to report that I’ve gotten much positive feedback from the medical community, my clients and other support groups across the province.
I’m appreciative of the many people I’ve met throughout my journey. I’ve learned a great deal about this illness and continue to educate myself today. I hope that I’ll be able to continue to share this knowledge and support for a long time.
I encourage all men who’ve been diagnosed with prostate cancer to look into attending an awareness group in their area. Meetings are generally open to partners, and provide information on the disease as well as much needed support.
Bren Witt is the Executive Director of the Okanagan Prostate Resource Centre Society and long-time facilitator of the Kelowna Prostate Cancer Support and Awareness Group. He was born and raised in Kelowna, British Columbia, is married and has two grown children. Bren is a 20-year survivor of prostate cancer.