Murray Corwin

March 1992 marked the inception of the Prostate Forum in Fullerton, CA by co-founders Bill Dehn, Murray Corwin, who are Prostate Cancer survivors and Dan O'Connor (deceased) who was a Prostate Cancer patient. Bill and Murray met Dan OConnor in 1991 at a hospital support group meeting. Dan had been recently diagnosed when his first PSA was 160 with a Gleason score of 7.. The leader of the hospital support group had asked Dan not to return to another meeting.. Bill and Murray came to the next meeting to support Dan and to pass out general information based on their own personal experiences. Since they had been treated in places different from this hospital they were also asked not to return. In December 1991, the three decided to start a group of their own which would have the freedom to speak about and discuss the disease without any restrictions. It took until March 1992 to get a meeting place, a flyer, and a core group of thirteen men. The 1st Presbyterian Church of Fullerton offered a room for the meeting without charge, as part of their commitment to community service. For the first meeting people sat in a circle describing their experiences, asking questions and getting some answers. Dan had been receiving testosterone shots monthly for two years and had been unaware of the PSA test. Dan was very angry that his urologist friend had never prescribed the PSA test for him. Unfortunately, Dan died soon after in 1992, but the memory of his sad experience with the disease is ever present, keeping us focused on the elements of our logo: INFORMATION, HELP AND HOPE. We had early recognized that, in addition to the usual psycho-social support, newly diagnosed men needed medical information. We named the new group "Prostate Information Support Group". Unfortunately, the acronym "PSIG" sounded strange, so the name was changed to "Prostate Forum" as a model for open dialogue. We became an all volunteer organization with all informational materials, print and video, free to everyone. When we outgrew the "50 person max" Board room, the church provided the Fellowship Hall which can hold 150 persons, and has sufficed for most meetings. In very special cases, for nationally renowned speakers, the church permits the use of the sanctuary which can hold 400. We have had more than 250 attendees when physicians such as Snuffy Myers, Stephen Strum and Bob Liebowitz are presenting. In 1996, a Board of Directors was established with men who are analytical, and have broad experience in different professional careers. They are business people, attorneys, engineers, an accountant, a mathematician, geologist, etc. They bring broad vision to develop the group's objectives and provide various perspectives for guidance and oversight to reach our goals. They have become essential, providing guidance, review and direction. It is their active involvement and significant activity which permits the Forum to grow and continue to be valuable. In 1998 a format of two meetings per month was established. One continues the evening format which continues to be our primary event. The second meeting is in the afternoon and also accommodates those older members who are unable to drive at night. We also offer regular pre- meetings in a process best described as "Prostate 101". These are specifically designed to bring the newly diagnosed up to speed faster so they may better understand the level of information and expertise which is usually presented to our highly educated group by the many renowned and expert speakers. In 1997, our 5th year, the mail list had grown to 1120 persons. The data base was intentionally culled to list only those still interested (since many men had their treatment) and reduced to 580 members. Since then, new members have shown up in numbers from 8-20 per month, so that in March 2000, the mail list contains 825 members from 141 cities and towns. The need continues for volunteers to share the many jobs since it is the Board members who end up taking care of our continuing tasks. Volunteers are solicited and could even serve for a short term on temporary assignments, if that is all they can spare. We welcome anyone wishing to help. Please contact us to volunteer your expertise, special talents, energy or time. Co- Founder Backgrounds Murray was diagnosed in 1991 at a very early stage and had several differing Pathology opinions, leading him to research, as much as an informed medical-lay person can, at the medical libraries. He purchased a service which provided 3 years of Medline abstracts containing any reference to Prostate Cancer. Armed with some knowledge, he also participated in a local hospitals support group and quickly realized that most men diagnosed with Prostate Cancer had very little knowledge of their illness and their options. Eventually, in 1993 after very careful Observation with a sudden rise in PSA velocity, Murray chose treatment with 4 months of Complete Hormonal Blockade, then 40% Radiation by Proton beam at Loma Linda and 60% follow up pelvic radiation by Linear Accelerator at a local hospital. Results were excellent and no further treatment has been needed. Murray is retired from a career in Aerospace, as an Electronic Engineer, Project Manager and finally in Human Resources as Manager of employee development and training. He was also Director of Ethics for the corporation. Researching and disseminating current prostate information occupies most of his time these days.- Bill was diagnosed at an early stage and was treated in 1985. His first urologists recommendation for a radical prostatectomy at age 62 was unacceptable. A third opinion resulted in the unforgettable words: "You don't have to pay the price of a radical - you are a candidate for radioactive seed implantation" After a week of researching medical journals at UCI Medical Library, Bill decided to go to Sloan-Kettering Memorial Hospital in New York, where they had pioneered this technique. A successful implanting of lodine 125 by the old fashioned open body method has kept his cancer under control. In spite of a single malignant colon polyp, which was removed in 1999, Bill is healthy today and is a competitive senior windsurfer. With college training in chemistry and pre-med Bill is able to research the medical literature and share his knowledge and experience with others. He retired from his own business in the field of engineered plastics which provided contract services of specialized tank linings for the major oil and chemical companies.. He spends most of his time researching and disseminating current information on prostate cancer. Special accomplishments: W e have become one of the largest, independent, and growing Prostate Cancer support group. Our established credibility is such that distinguished urologists and oncologists now request an opportunity to make presentations to our group. Numerous physicians now refer patients to us and many post our flyers in their offices to alert their patients to the existence of a credible information source. They recognize that our attendees are truly informed, highly educated and sensitive to the needs of the patient. • We have available dozens of the most current, printed educational materials, always free. • We offer a complete video library which numbers more than 200 tapes. These include copies of all our guest speaker presentations, national symposium speakers as well as commercially produced materials. • We designed, produced and found funding for the first national Prostate Cancer Public Forums in 1995 and 1996. These conferences had programs with nationally renowned physicians speaking to lay audiences on the latest scientific information on prostate cancer. This was a first. Those Public Forums became a successful model for over dozen similar symposia in the major cities of the country. By using lectures and self-selected workshops, we presented an opportunity for learning in depth as well as dialoging with the experts. The 1995 Forum attracted 850 attendees from 28 states; the 1996 attracted more than 1200 attendees. • We have helped co-sponsor subsequent interstate symposia. • We were supportive and co-sponsor of satellite transmitted Prostate Cancer symposia to other geographically dispersed sites, live and interactive. • We have a Hotline for persons to call for credible, authoritative information (NOT advice) with sensitivity which helps allay the fears and terror associated with the Cancer diagnosis. In this function we have helped more than 2000 persons primarily in Southern California, but from all ove the U.S. • We have achieved the status of a credible, valuable and worthwhile source of information with many members of the medical community. • We have assisted the initiation of 4 new support groups in the Southern California area. • We became, in 1999, the largest chapter of US-TOO International, providing us with a non-profit 501[c](3) status and offering donors tax deductibility for contributions. • We are affiliated with and partly supported by the American Cancer Society. • We are founding members of the National Prostate Cancer Coalition (NPPC). • We are affiliated with PAACT (Patient Advocates for Advanced Cancer Treatment). • We have several members of the Board who have functioned as a "speakers bureau" to speak on the subject of prostate cancer at businesses, government offices and service organizations. Requests often come through the American Cancer Society. • We have provided 25 sets of prostate cancer books to Orange County libraries • We have voice mail available for persons to inquire of schedule and/or to request a call-back to answer a concern or question, or obtain a reference. • Many of our members have participated in a structured, informal trial seeking to determine the influence of Lifestyle changes on their disease and/or quality of life • •We are initiating an Internet Website to broadly disseminate our unique prostate cancer information, which will eventually include our newsletter available for download, our latest schedule, streaming audio of some of our key presenters as well as some streaming video of some of our extraordinary presentations. Some future objectives will include: • Ensuring that our Website will be valuable, informative and NOT trivial nor redundant. • Providing new, useful information nationwide and internationally by Internet. • Providing a high quality newsletter with the printed commentary of our presenters. • If contributions were made to a Prostate Forum Foundation, we would seek ways of funding • trials or scientific testing on Prostate Cancer issues, e.g., Lifestyle effects on prevention of prostate cancer, and/or after diagnosis; • testing the effects of certain herbals and compare them with some standard pharmaceuticals, etc. • bring national renowned researchers from dispersed locations to present their special • expertise at the Forum; • videotape these extraordinary people at their own work site, negating the need for travel time and expense; and then to the Internet Website; Policies Although we neither support nor endorse any of our speakers or individual attendees positions or opinions, we DO provide an open forum and work at presenting, within reasonable limits, various interesting viewpoints. Presenters of all positions are encouraged to bring information, data and opinions supported by published materials to share with our attendees. The views expressed are neither recommended nor endorsed by the Prostate Forum as a whole or by an individual member. Support groups such as ours provide a forum for exchange of information and sharing experiences. The group helps each of us become more educated and therefore more able to exert greater control over our disease. You will find that others DO care and the meetings are an opportunity to better deal with fear or pain as well as becoming better informed medically. We do not offer medical advice, for that is the role of your physician.