Membership in the Calgary Warriors is about 50 and, since the group started, 14 members have died. Ken doesn’t pull any punches. Members of the group expect to die from prostate cancer, often sooner rather than later. “These men,” Ken says, “face a lonely struggle unless they can meet and share their collective efforts and treatment successes. The goal is to delay the inevitable and still maintain a relatively good quality of life.”
Quality of life issues are key to the Warriors, and you’d be hard pressed to find a group of non-professionals more aware of current research projects related to prostate cancer. In fact, current changes in treatment and pain control are an essential part of most meetings. Exhaustive overviews of drug trials, readings, speakers, books, and evolving therapies are presented at meetings and circulated to members in the group’s minutes so that each member can find contact information and websites for issues that have been discussed in the group sessions.
As well, members relate their personal experience with specific therapies. These are very specific reports not simply a general comment on their health. For example, at a recent meeting in Calgary a member reported:
Terminated SB-939 trial after 6 weeks. PSA has continued to rise from 37-200+ range. Alkaline Phosphatase (ALP) has risen to 2470 (normal 30-145). Since [then I] restarted Avodart, HDK, and LEF “Ultra Natural Prostate,” which appears to have increased PDADT from 0.6 months on the trial to 2.7 months. Likewise ASP rise has slowed.
Clearly, the Warriors are not for the scientifically insecure, and they meet the challenge of their disease with a focused, intellectual curiosity.
Ken’s experience with the group was passed on at a working session during the September 2010 PCCN national conference on prostate cancer, with the objective of helping other PCCN organizations start a “Warrior” group.
One of the key messages Ken had was the importance of choosing a secretary that is well versed in prostate cancer progression, therapies, and management. By effectively using email and other social networking technologies for arranging meetings, setting agendas, and disseminating information, the secretary can play a very important role in pulling everything together easily. Ken also notes the importance of placing large, readable name cards in front of each member at meetings, so identification is clear and immediate.
PCCN-Calgary has given the Warrior group a lot of support. Its general membership paid for a Warrior representative to go to California to attend the annual conference of the Prostate Cancer Research Institute, for example.
Warriors gather an hour prior to a regular PCCN-Calgary meeting and often attend that meeting after theirs concludes. While they have a lot in common with the larger group, the Warriors bring a lot of hope, information, and support to a specific group of men---men whose fight with prostate cancer is in the last rounds.