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PC Support Group Guidelines
(Revised August 29, 2006) I. FOR ALL LIST MEMBERS: 1. Our group's objectives are to: a. Provide support to those classmates who have been afflicted with PC. b. Enable those previously afflicted to assist and support each other during and beyond initial treatments. c. Enable newly afflicted members to seek and receive advice and assistance from those previously afflicted, keeping in mind that individual circumstances and priorities for treatment vary, so one's choices may not be best for another. d. Educate members on prevention, treatment options and post treatment lifestyle modification options. e. Educate members on various issues relating to benign prostatic hyperplasia/hyper-trophy (BPH) and other non-cancerous prostate problems. 2. Keep in mind that individuals have differing motives for participating in the PC support group. Be understanding and supportive of each other’s differences. 3. The real success of this group will be best achieved by establishing and maintaining an environment in which we all feel comfortable speaking openly and discussing sensitive issues that are personal in nature. Lend your personal support to that goal by: a. Treating all discussions confidentially and not discussing content of a personal nature outside the group without the express permission of the individual concerned. b. Being sensitive to the feelings of others when approaching individuals to request personal information and in framing your message responses to the group and to individuals. 4. Vital to overcoming threats of PC and other prostate afflictions is the timely sharing of relevant information with the group. Whenever and wherever you encounter such, make the effort to get it on out to us. When in doubt, err on the side of getting it on out there. 5. Make Kevin Brown and Jud Ellis proud of our efforts and accomplishments. II. FOR THOSE WHO HAVE (OR HAD) PROSTATE CANCER: 1. Identify yourself to the list moderator with the year you were diagnosed, and let him know whether or not you choose to be identified on the list with a (PC-XX) by your name, referred to as the (PC) Badge w/Wreath, indicating that you are available to consult with other list members on a one-on-one basis to discuss treatment options, post treatment issues and/or receive/provide moral support (see paragraphs 3 & 4, section V). 2. If you wish, complete the attached Prostate Cancer History Form for your own use in giving information easily and simply to those you wish to have it. 3. Answer inquiries from others if you wish, or do not. Your choice. 4. If you wish, send the list moderator your completed history form for inclusion in a master worksheet, to be held in confidence. The information provided may be used for statistical analysis to develop trends of interest to all list members, presented in an anonymous format. For (PC) Badge recipients, portions of the information will be used to develop and maintain the Treatment Selections Table to be provided to all (PC) Badge recipients to facilitate mutual post treatment assistance, and to all newly diagnosed classmates, in confidence, to assist them in receiving advice and assistance in consideration of various treatment options. 5. At some point you may wish to share particularly sensitive aspects of your history anonymously in narrative form with the group. This would allow you to preserve confidentiality while helping others by enhancing their awareness of the resource base available to them and providing them with a means of contacting you directly if you are so willing. The list moderator will assign an ID number to the document and post it to the list. Anyone wishing to consult with you on your history would first need to contact the list moderator or his alternate for approval. Do not include information that you would not want to discuss with someone directly. You may also post an anonymous history and elect not to be contacted. Your choice. 6. If you consult with others, avoid recommending any specific course of treatment. Remember that goals and treatment options vary for each individual and that treatments will be changing and improving over time. 7. The best advice you can give a newly afflicted classmate is to recommend that he follow the suggestions below. III. FOR THOSE WHO HAVE JUST BEEN DIAGNOSED POSITIVE FOR PROSTATE CANCER: 1. Get a second opinion. And a third. 2. If you did not already get a biopsy, get one, from a doc/hospital with lots of experience. Experience counts. Learn about the Gleason Score. Learn your Gleason Score for each positive sample, and the location of each. Get a drawing of it. 3. If your urologist doesn’t explain all the current treatments available and all the pros and cons, get a new urologist. 4. Get knowledgeable on all aspects of PC in order to understand the issues, ask the right questions and take a proactive involvement in the treatment process. 5. Determine your goals and priorities, and be honest with yourself. Here are some things to consider: a. What is really most important to you – your quality of life in the short term, or your best chance for long-term remission? b. What are your priorities? Best chance for getting rid of the cancer? (There is no sure cure, but the odds are greater or lesser depending on the stage of your cancer and whether it has escaped the prostate.) Best chance for bladder control? Best chance for an active sex life? Rank these 1, 2, 3. c. Discuss your priorities and goals with your significant other. Her’s may be different, and may change yours! 6. Discuss your diagnosis with as many physicians (not urologists, radiologists or surgeons) as you can, asking them these questions (do not prompt them): If you had my diagnosis, (1) what treatment would you select? (2) Who would do it? (3) Where would you go to have it done? And (4) Why to those questions? 7. Contact the list moderator or his designated alternate. He will provide you with a copy of The Treatment Selections Table showing the previously afflicted (PC) Badge recipients and the treatments they selected so that you can consult with them on a one-on-one basis as you choose. Their experiences may help you in your treatment selections, keeping in mind that their priorities and the treatments they selected may differ from yours. Also let the moderator know how much information about your situation you want released to other list members (see paragraph 7, sectionV). 8. Decide on a course of treatment(s). 9. Get it done as soon as possible. 10. Follow instructions for recovery/rehab, etc. 11. Follow the guidance set forth in the PC Prevention Guide to optimize the performance of your immune system. It is even more important at this stage as you do battle with cancer. 12. If you’re on speaking terms with God, have regular conversations. If you aren’t, negotiate some terms. 13. Do the things that we all put off, but which should be done and updated on a regular basis. This goes for everyone, cancer or no cancer: a. Do a checklist of where your things are. b. Do a good financial statement. c. Do a good will with specific bequests and final instructions. d. Let your loved ones know you love them. e. Make good notes for whomever eventually does your Assembly memorial. 14. Remember, in the long run we are all going to be dead. 15. Do all these things, and live life to the fullest. IV. FOR THOSE WHO HAVE NOT BEEN DIAGNOSED POSITIVE FOR PROSTATE CANCER: 1. Get your PSA (prostate specific antigen level) checked at least once per year, or more often if you have problems such as trouble urinating or frequent urination. The PSA is a simple blood test that requires no fasting. Avoid having sex 48-72 hours prior to being tested as that may produce a false high reading. If your PSA is elevated, your physician may recommend further testing. Or he/she may prescribe antibiotics to insure that infection is not the cause of an elevated PSA score. Request a test that will include your free/unbound and bound PSA percentages. 2. Obtain a copy of your previous PSAT scores from your doctor and watch for changes. A rise of 0.5 or more should be cause for concern. But keep in mind that factors other than PC may produce a temporary rise. Get it checked out. 3. Maintain good general health and an effective immune system by following the advice in our Prostate Cancer Prevention Guide. 4. Stay informed, and have a general idea of what to do if you develop PC. Help other list members stay informed by passing on pertinent information that you come across. 5. Remember, PC is preventable if you are following a healthful lifestyle. V. FOR THE LIST MODERATOR: 1. Promote open, free discussions among list members while insuring the maintenance of appropriate levels of confidentiality and sensitivity to others. 2. Maintain list currency through timely submissions of changes to WP-ORG, and provide list members with monthly updates. 3. On the monthly updated lists to the membership, indicate those members who have been previously diagnosed with PC and who have made themselves available to other members for consultation on initial treatments and post-treatment issues, by placing a (PC-XX) by their name on the list, where XX indicates the year of initial diagnosis. This is commonly referred to as the (PC) Badge w/Wreath and the recipients as (PC) Badgers. 4. Acknowledge to the list each newly designated (PC) Badge recipient with an appropriate award ,e.g. “Attention to orders! By whatever authority my imagination allows as list moderator, (name) is hereby awarded the (PC) Badge w/Wreath to be worn proudly by his name on the PC list, telling other list members that he has been afflicted with PC and is making himself available to them on a one-on-one basis to provide whatever counsel and assistance he can offer on the subject, while keeping in mind that everyone's situation is unique with regard to individual circumstances and personal priorities, and that what worked for him may or may not be best for them. His willingness to participate in this manner is a reflection of his personal courage and selfless dedication to his fellow classmates. He has thus joined an elite group of whom we are all very proud and grateful, and who merit our support as they deal with their individual afflictions.” 5. Maintain a confidential database of individual historical PC information received from list members. 6. Maintain the Treatment Selection Table of (PC) Badge recipients showing information on their initial PC diagnosis, the various treatments selected by them, and their results. Provide an updated copy of the table to them to facilitate mutual post treatment assistance, and also to newly diagnosed classmates, informing them they should handle the information in a confidential manner and use it only for contacting individual (PC) Badge recipients for support and treatment advice. 7. Make early contact with any classmate newly diagnosed with PC, invite him to join the list if he has not already done so, and explain how he might be supported by the list membership. Provide him with a copy of the Treatment Selections Table so that he may contact whomever he wishes on the table to seek guidance on selecting treatment options. Should he choose to join or is already on the list, sort out with him the level of exposure/confidentiality with which he is most comfortable regarding the diagnosis -- (1) moderator does not tell anyone on the list about the diagnosis, but encourages him to contact (PC) Badge recipients individually for help, (2) moderator notifies only the (PC) Badge recipients so they can contact him to offer help, or (3) moderator informs the entire list so the classmate can receive fairly broad support. Where he wants to be contacted by (PC) Badge recipients or the list members at large, moderator will make that clear to the appropriate group and provide his phone number and email address. Moderator will encourage list members to initiate contact with him by phone or email depending upon their level of compassion and/or desire to help. Moderator will check back with him within a week to see if he is comfortable with how we have been handling it and find out what else we can do. Should he choose to not join the list, moderator will, with his permission, notify the (PC) Badge recipients of the situation and ask them to contact him. Similarly, moderator will follow up in a week. 8. Maintain the class PC Diagnosis Distribution Table showing the distribution of PC diagnoses in the class over time and comparing it with the national average as provided by the most recent SEER data which is normally revised in April of each year. 9. Insure that the class at large maintains awareness of the services provided by and to the list membership by periodically providing information to the class on list objectives and class status with regard to PC, and encouraging classmates interested in PC prevention and those newly diagnosed with PC to join the list. 10. Maintain a confidential database of submitted anonymous histories published to the list, assigning each an ID number. Direct individuals wishing to consult with the authors to them based on the latter’s personal preferences. 11. Coordinate with the list member designated to maintain the PC web site on use and content of the site. 12. Insure an alternate moderator is designated, known to the list as such, and kept informed of all appropriate ongoing list activities. 13. Interface with outside entities such as other class PC list moderators and representatives of PC study organizations to coordinate activities of mutual interest to the list members. CLICK HERE to view a PC History Form that you can download and print. It's in PDF format so Adobe Reader must be installed on your PC to view it. Click on the browser's BACK button to return to this page.  |