Prostate Cancer Canada Network Calgary Society (Prostaid Calgary Society)
Our Story Why We Exist
One Man’s Story by Bob Shiell
My journey with prostate cancer started about 12 years ago with a phone call frommy father. At age 75 he had been diagnosed with metastasis prostate cancer. Ihad just turned 50. My knowledge of prostate cancer was very limited. I calledour family doctor who filled me in with information about what to expect withmy father and also suggested that I start regular psa testing. I soon startedgetting regular dre's and psa tests. My father went on to hormonal therapy andlived another 4 years, ultimately dying of a heart attack.
During this period every time I went for a test I heard "everything'snormal". When I was 55, my psa came back at 3.6 and I was sent to anurologist. Again, "everything's normal - come back next year." Thefollowing year my psa climbed to 5.6 and a subsequent biopsy gave me a Gleasonscore of 6, and six positive core samples out of 6 taken. I had prostatecancer!
My urologist told me that surgery was my best option, but because of the extent ofthe cancer and the good possibility of it having spread outside the capsule, hewould have to be aggressive in his surgery. He assured me I would most likelybe impotent, and possibly suffer from incontinence. Radiation was alsomentioned as a secondary treatment if the surgery failed. Needless to say I wasin shock! I was 56 and I had thought, healthy. My routine for over 8 years wasto swim a mile a day, watch what I eat and drink and not smoke. I had nosymptoms and felt great. But suddenly I felt like my life was over.
After getting over the initial shock I decided to be equally aggressive in my searchfor treatment options. I went first to the library. Remember, this was almostsix years ago. The books I found were not very helpful. Most dealt with surgery– the operation, recovery, living with side effects, etc. While I was doingresearch I sent copies of my biopsy slides to Memorial Sloan Kettering Hospitalin New York for a second opinion. I also sought out and had an appointment withanother urologist in another city. The internet provided me with links to othertreatments, to survivors, and prostate cancer specialists. To make a long storyshort I finally linked up with Dr. Haakon Ragde in Seattle, Washington. Hisrecommendation was three-fold. A 4 month course of hormones (Zoladex and Flutamide),25 sessions of external beam radiation and finally brachytherapy – theinsertion of tiny radioactive seeds directly into the prostate gland underultrasound guidance.
I went with his recommendations. The hormonal therapy and external beam radiationwas provided by the caring staff at Tom Baker Cancer Centre in Calgary. Asbrachy was not yet available in Canada I had that procedure done in Seattle. Ifinished my treatment in December, 1997.
Now over seven years out and my psa is stable at 0.1. My quality of life isexcellent. Knowing what I know now, would I do it again? Absolutely. But I alsorecognize that my choice of treatment, while right for me, is not necessarilyright for others.
Since my diagnosis I have become very active in the prostate cancer support community. I took over as President of PCCN Calgary (the local support group) four years ago, and in January 2003, became President of the Prostate Cancer Canada Network.
Prostate Cancer support groups fulfill an important role. They are there when the newlydiagnosed need someone to talk to right now! They can also provide up-to-dateinformation on various treatment modalities. Many groups regularly featuremedical guest speakers at monthly meetings to keep members informed. Buildingawareness for early detection and advocating for treatment options are alsoimportant functions of the groups.
PCCN Calgary's mission statement says it all: "Our objective is to assist andsupport patients, families and friends as they deal with prostate cancer. Weinform, empathize and reassure men on their journey. We share our experienceswith our own cancer, lift our spirits and strengthen our resolve to fight forquality of life and a cure."
PCCN is the national organization representing some 120 independent support groupsacross the country. PCCN speaks for tens of thousands of men suffering fromprostate cancer to government and business. PCCN builds awareness throughprojects like "Living Proof" – a national awareness campaignfeaturing prostate cancer survivors and a soon to be released nationaltelevision campaign featuring Red Green.
What can be done to help in the battle with prostate cancer? If you're a man over 50or over 40 with a family history of cancer, talk to your doctor about gettingtested. Watch your diet and exercise regularly. If you have already beendiagnosed, get in touch with your local support group. Our website is a good source of links and information about prostate cancer and provides contact information to groups across the country.
Our Impact What We Do
PROSTAID Calgary/Prostate Cancer Canada Network Calgary Society is your first destination for prostate cancer support in Calgary, Alberta, Canada and across the world. With information and support through our online videos, support meetings, prostate cancer news, and awareness initiatives, we help men and their families during their journeys with prostate cancer.
The Digital Examiner is our in-house publication with a monthly circulation of > 1300. It is distributed across Canada to members and professionals who have an interest in prostate cancer. The Digital Examiner contains information about meetings, public awareness events, note-worthy research about prostate cancer, new drugs and therapies, and clinical trials, particularly in Calgary.
Our website has information about events, meetings, and links to more than 100 videos of past presentations to our group about prostate cancer. We also have an expanding social media presence via Linked In, Facebook, Twitter, and YouTube. These digital platforms allow us to expand our reach into the community and to expand our membership. Frequently, visitors to our website and YouTube channel from across Canada and the US say “Thank goodness I found you”.
Awareness Events provide information about PROSTAID Calgary and prostate cancer. In 2015, we sponsored Cancer Survivorship Symposium in Calgary, AB attended by >200 registrants. Annual events open to the public include our “Fun in the 50s Festival” and Show ‘n Shine with car and motorcycle exhibits, Fire-Up About Prostate Cancer – in collaboration with Darkside Racing, health care exhibits, support for Man Van PSA testing, and national television coverage of a Calgary Stampeders Football game in September.
Outreach Reach and Collaborations: Through our own awareness programs, we “touch” more than 1 million Canadians a year with our messages about prostate cancer. In addition, we collaborate with Prostate Cancer Canada, Prostate Cancer Centre and Tom Baker Cancer Centre in Calgary, University of Calgary and University of Alberta researchers, Wellness Centre in Calgary, and pharmaceutical companies.
Member Development – we support the attendance of 4 - 5 members to the annual September conference of Prostate Cancer Research Institute in the United States. The conference provides information presented by leading urologists, oncologists, and scientists to prostate cancer survivors and family members in attendance. On their return, these members become key mentors in our peer-to-peer support programs for men and families dealing with prostate cancer.
"One in three Canadians will experience cancer. In my family, my father had prostate cancer, my mother died with ovarian cancer, and my wife was diagnosed andsuccessfully treated for breast cancer 6 months after my initial prostate cancerdiagnosis. Having faced cancer, and at least for the time being having beatenit, I now have a much greater appreciation for each day. I firmly believe thatmaintaining a positive attitude and helping others along their journey goes along way to a successful recovery." - Bob Shiell, prostate cancer survivor and President of the Prostate Cancer Canada Network
Our Programs How We Do It
PROSTAID Calgary/Prostate Cancer Network Calgary has 3 missions:
• To provide peer-to-peer mutual support for men and their families on their journey with prostate cancer,
• To increase public awareness and understanding of the disease,
• To advocate for a strong provincial voice in matters relating to prostate cancer.
Developing and maintaining services for survivors and their families is an ongoing challenge which we meet in a variety of ways:
Monthly meetings that include:
Warriors – private group meetings for men whose prostate cancer has returned after primary treatment.
Wives, Partners, and Caregivers – private group meetings for individuals who provide support for men with prostate cancer, and
General meeting – public meetings that include an invited guest speaker such as – urologists, oncologists, research scientists, nutritionists, and other health care professionals.
Knowledge Library – We offer our members an extensive lending library about issues related to prostate cancer.
The Digital Examiner is our in-house publication with a monthly circulation of > 1300. It is distributed to members and professionals across Canada with interest in prostate cancer. The Digital Examiner contains information about meetings, public awareness events, note-worthy research on prostate cancer, new candidate drugs in the research pipeline, and clinical trials available to our members in Calgary.
Affiliations with Prostate Cancer Canada, Canadian Cancer Survivorship Network, Prostate Cancer Centre and Tom Baker Cancer Centre, both in Calgary, Alberta Prostate Cancer Research Initiative, and the Alberta Cancer Network.
Our Requests What You Can Do
PROSTAID Calgary relies on the support and expertise of volunteers and on donations and fund raising to support our programs of peer-to-peer support, awareness and advocacy.
- Join our Board of Directors – come share your special talents and experience with our 15 member Board of men and women. Special skills useful to our Board of Directors – corporate secretary, treasurer, advertising, community liaison, clinical liaison, pharmaceutical liaison, media liaison, social media, website, etc
- Help out at our general meetings, "Show and Shine" Car Show, casino fundraiser (every 18 months) and other awareness events.
- Facilitate one of our private focus groups
- Manage our Knowledge Library
- Support our mascot "Dr. Digital"
- Join our Speaker’s Bureau–present information to businesses and service clubs
- Meet the public–trade shows, health fairs
- Assist Dark Side Racing–in their Fire-Up for Prostate Cancer Awareness program
- Calgary Stampeders partnership
- Alberta Gaming and Liquor Commission – Casino approximately every 18 months.
- “Fun In The 50s” Show and Shine (annual car and motorcycle show).
- Wine Festival – new theme each year.