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| September 06, 2008 - Welcome! You are visitor number: 75777 since January 9, 2003.
Site updated: August 25, 2008 Meeting Location: 1st Presbyterian Church, 838 N. Euclid St., Fullerton, CA 92632 (1 3/4 miles North of the Euclid Street exit on the 91 Freeway) Next evening meeting 4th Thursday, August 28, 2008. Newly Diagnosed Class ("Prostate Basics“): Leader - one of our Directors Place: 2nd Thursdays, in the Library at the First Presbyterian Church of Fullerton, 4th Thursdays, in the Music Room - signs will guide you. Newly Diagnosed Classes for August and September, 2008 as follows: Afternoon classes: 2nd Thursdays, September 11 and October 9, 11.00 a.m. - 12.45 p.m. Evening classes: 4th Thursdays, August 28, September 25 and October 23, 5.00 p.m. – 6.45 p.m. Recurrent/Advanced Group: Moderator: Robert P. Moore - volunteer Meets: 4th Thursday evenings, August 28, September 25 and October 23, 2008, 5.00 p.m. – 6.45 p.m. Place: The Music Room at the First Presbyterian Church of Fullerton- signs will guide you. CALL THE VOICE MAIL NUMBER (714) 607-9241 to learn about our meetings or request Prostate Information. MEETING LOCATION: First Presbyterian Church, 838 North Euclid Street, Fullerton, CA 92832 (located 1 3/4 mile north of Euclid exit on 91 Riverside Freeway) MAILING ADDRESS: Prostate Forum, 1250 Fieldgate Ave., Hacienda Heights, CA 91745-2313 FUTURE MEETING NOTICES AVAILABLE BY E-MAIL: To receive these, scroll to the end of this page and enter your e-mail address in the space provided. To read about the history of the Prostate Forum of Fullerton, click this link:
OUR 2008 MONTHLY MEETING SCHEDULE: Afternoons: New day, 2nd Thursdays, 11.00 a.m. - 12.45 p.m. Class for the Newly Diagnosed, in the Library. Bring your own brown bag lunch. Open discussion meeting at 1.00 p.m. - 3.00 p.m. Discussion and sharing of new Prostate Cancer information and related questions. Meets in the Board Room, next to the parking lot, in front of the church. Evenings: New day, 4th Thursdays. Doors open at 6:00 p.m. for networking and obtaining materials. Speaker at 7:00 p.m until 8:45 p.m. Separate, concurrent sessions for the Newly Diagnosed and Recurrent/Advanced begin at 5.00 p.m. Both groups meet before each regular meeting at the Church - Newly Diagnosed and Recurrent/Advanced meet separately. Look for signs. Groups are adjourned early to permit attendees to network and review our resource area. Evening Meeting, 4th Thursday, August 28, 2008: Doors open at 6 PM to pick up information, videotapes, etc. Main program at 7 PM SUBJECT: LEARNING FROM OTHER PC SURVIVORS WITH SIMILAR SITUATIONS & SHARE YOUR EXPERIENCE OF OPTIONS, DECISIONS AND OUTCOME In response to requests to offer a meeting format of prior years, the August Evening meeting will be a time of sharing mutual experiences. Different Prostate Cancer (PC) survivors with seemingly the same situation choose different methods of treatment. As part of the decision process they have found the “masters”, avoided the apprentices; found treatments which were promising and others that were repellent; discovered pharmaceuticals as well as supplements which were helpful. Come and exchange your own data and experiences; it will be informative and can help avoid dead ends. There will be 5 tables, each with a different discussion focus with a facilitator who experienced that specific treatment: one table each for Surgery, External Beam Radiation, Hormonal Ablation, Active Surveillance and Radioactive Seeds. Come join us to learn, teach and share choices and outcomes. Everyone who has experienced this meeting format tells of how valuable they were in aiding the decision process and understanding the expected outcomes. Evening Meeting, 4th Thursday, September 25, 2008: Doors open at 6 PM to pick up information, videotapes, etc. Main program at 7 PM SUBJECT: RECOVER POTENCY AND/OR URINARY CONTROL LOST AFTER PROSTATE CANCER TREATMENT.
SPEAKERS: Dr. Galen Bird and his wife Linda Bird. Dr. Galen Bird, together with his wife Linda Bird, will share their experiences in their search for a successful way to restore both his sexual potency and urinary continence. Quite often after radical prostatectomy and other local treatments for prostate cancer, the negative sexual and urinary system side effects occur. Dr. Bird will describe his experience with the variety of different methods and the success or lack of success with them. Linda Bird will provide the spouse’s perspective regarding their experiences and attempts to find satisfactory solutions, which were literally life-changing. It is a fascinating and interesting story, which many of us will also find relevant. Linda has described their search and experiment process as “coming from depression, anger and frustration to an active, fantastic life together”. The Birds are coming from Missouri to share their knowledge and bring hope to many who can benefit from their success. Excerpts from "Cancer as a Turning Point" By LawrenceLe Shan Ph. D. One of the terrible things about serious illness is that it often reduces the person who has it to the role of a helpless bystander: everything seems up to how well the physicians can do their job, what new things are discovered in the laboratories, and so forth. We have to be passive and there is nothing much we can do but wait and suffer. Modern knowledge gives you a way to be active in your own search for health. You do not just have to sit and wait for the doctors to cure you or fail to cure you. Taking a part in determining our own testing changes how we feel about ourselves and our situation. Instead of helpless pawns in the hands of the illness and the medical profession, we are now embarked on an adventure. We may win or lose, but there is something we can do and influence what becomes of our lives. Sometimes when we are terribly ill, we can make the illness the turning point in our lives. Good luck on the adventure. ABOUT OUR MEETINGS: Although we neither support nor endorse our speakers or individual attendees’ positions or opinions, we do provide an OPEN forum and work at presenting, within limits, various interesting viewpoints.Presenters of all positions are encouraged to bring information, data and opinions to share with our attendees. Note that the views expressed are neither recommended nor endorsed by the Prostate Forum as a whole or by an individual member. Personal attacks or disparaging personal remarks are not permitted. We are an official chapter of the US-TOO Organization and continue to be sponsored by the American Cancer Society. We are also associated with PAACT - all organizations which provide prostate information and hope. We are a non-profit, charitable, volunteer organization with 501[c](3) status which should provide tax deductibility for donations to the Prostate Forum. Donations are needed to fund our support efforts. 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 able to exert greater control over the 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 don’t offer medical advice, for that is the role of your physician. We do have need for volunteers for the work of the support group. Please call to contribute your expertise, talents, energy or time. SHARING OUR EXPERIENCES, IDEAS AND RESULTS....IN A SAFE PLACE. As always, there have been concerted requests to gather in small groups as in our earlier days of bonding, camaraderie and emotional support from others with our disease. What have you learned? How have you fared with your decisions? What, if anything would you do differently? What news have you heard, etc.? In a safe, caring place, we'll all have an opportunity to share our experiences, our concerns, ideas and questions. Attendees go home at the end of evening feeling better, more knowlegeable and hopeful for the future. It is an experience that only we, as a group of caring, interested Prostate Cancer survivors, can provide. It always offers hope and bonding with others in a similar condition. Our members are always seeking new and interesting resources to aid our understanding and treatment of prostate cancer. If you’ve read or found something you’d like to share, please make copies and bring them to the meetings. We maintain an extensive Video Library, free for borrowing with a $10 returnable deposit. Almost all of our expert presentations are available on tape along with tapes of major Prostate Cancer Conferences and special events. Visit our resource table at the rear of the meeting room.
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HISTORY OF THE PROSTATE FORUM OF FULLERTON March 1992 marked the inception of the Prostate Forum in Fullerton, CA by co-founders Bill Dehn,(now deceased, of ALS) and Murray Corwin, who is a Prostate Cancer survivor. Bill and Murray met in 1991 at a hospital support group meeting. Bill and Murray went to the meeting to pass out general information based on their own personal experiences and they were asked not to return. In December 1991, they decided to start an independent group of their own which would have the freedom to speak about and discuss the disease without any censorship or restrictions. In March 1992, they had a meeting place, a flyer, and a core group of thirteen men. The recall of many sad experiences with the disease is ever present, keeping us focused on the elements of our logo: HELP, EDUCATION AND HOPE. The 1st Presbyterian Church of Fullerton offered a room for the meeting without charge, as part of their commitment to community service. At the first meeting, people sat in a circle describing their experiences, asking questions and getting some answers. We had early recognized that, in addition to the usual psycho-social support, newly diagnosed men needed detailed medical information to partner with their doctor in choosing an appropriate treatment. , Our name became the "Prostate Forum" as a model for open dialogue. We are 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 special cases, for nationally renowned speakers, the church permits the use of the sanctuary which can hold 400. We have had more than 275 attendees when physicians such as Snuffy Myers, Stephen Strum or Bob Leibowitz are presenting. In 1996, a Board of Directors was established with men who are motivated,involved, analytical, have broad experience in different professional careers and are practical. They are business people, an attorney, engineers, an accountant, a mathematician, a geologist, etc. The current 15 directors bring broad vision to develop, and achieve the group’s objectives and provide different perspectives for guidance and oversight to reach our goals. They have become essential, providing leadership, review and direction. It is their active involvement, volunteering many hours in significant activity which permits the Forum to continue our valuable community contribution, and grow In 1998 a format of two meetings per month was established. Our main meeting is in the evening. The second meeting is in the afternoon, accommodating our older members, and those unable to drive at night. We also offer regular pre-meetings, often called "Prostate 101". These sessions are specifically designed to bring the newly diagnosed up to speed faster so they may better understand the level of information and sophistication which is usually presented by the many expert and famous speakers to our very knowledgeable audience. New members show up in numbers from 5-15 per month, so that in January 2003, the mail list contained 1140 members from 141 cities and towns. In April 2003, there will be 510 mail members with growth expected as before. A serious need continues for volunteers to share the many tasks necessary to produce an interesting and valuable experience but it is the Board members who end up taking care of continuing jobs. Volunteers are solicited: they could even serve for a short term on temporary assignments, if that is all the time they can spare. Anyone wishing to help is welcome. Please contact us to volunteer your expertise, special talents, energy or time. CO-FOUNDERS BACKGROUND: Murray was diagnosed in 1991 with a very early stage PCa and had several differing pathology opinions, leading him to research, as much as an informed medical lay-person can, at the medical libraries. 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 or their options. He exercised very careful, active "Observation" until in 1993 with a sudden rise in PSA velocity, Murray chose a treatment of: 4 months Complete Hormonal Blockade, then a 40% dose by Proton beam radiation at Loma Linda, followed by 60% pelvic radiation dose by Linear Accelerator at a local hospital. Results were excellent and no further treatment has been needed. Murray is retired from 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. Collecting and sharing current prostate information occupies most of his time currently. Bill was diagnosed at an early stage and was treated in 1985. His first urologist’s 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-KetteringMemorialHospitalin New York, where they had pioneered this technique. A successful implanting of Iodine-125 by the old fashioned open body method kept his cancer under control.Bill was one of the most respected activists on the prostate cancer scenewith national recognition of his many extraordinary accomplishments Unfortunately, in 2001, Bill passed away, not from PCa, but from Lou Gehrig’s disease (ALS). SPECIAL ACCOMPLISHMENTS: · We have become one of the largest, independent, and growing Prostate Cancer support groups. 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, very knowledgeable and sensitive to the needs of the patient. We have feedback from many hundreds, if not thousands, of PCa survivors who have been helped. · We have available dozens of the most current, printed educational materials, always free. · We offer a complete video lending library which numbers more than 300 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 a 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 had a Hotline since 1992 for persons to telephone for credible, authoritative information (NOT advice) delivered with sensitivity and counseling, which help 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 also from all over the U.S. · We have become a credible, valuable and worthwhile source of information with many members of the medical community. · We have assisted the initiation of 4 other prostate cancer support groups in the Southern Californiaarea. · 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 one of the 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 are part of a "speakers bureau" to present information about prostate cancer at businesses, government offices and service organizations. Requests often come through the American Cancer Society. · We have provided 25 sets of 5 prostate cancer books to OrangeCountylibraries.
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