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GUIDELINES FOR PARTICIPATION IN THE '59 PC SUPPORT GROUP

I. FOR ALL LIST MEMBERS:

1. Our group's objectives are to:

a. Provide moral 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 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 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 out to list members by sending a message to <usma1959-pc@west-point.org>. When in doubt, err on the side of getting it on out there. Messages should be sent in plain text rather than HTML whenever possible.

II. FOR THOSE WHO HAVE (OR HAD) PROSTATE CANCER:

1. Identify yourself to the list moderator with the year diagnosed (XX) and let him know whether or not you choose to be identified on the list with a (PC-XX) by your name 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.

2. If you wish, complete a Prostate Cancer History Form for your own use in giving information easily and simply to those you wish to have it. The Form is available from the List Moderator.

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.

5. At some point you may wish to share your personal PC 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 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. Get a copy of “Guide to Surviving Prostate Cancer by Dr Patrick Walsh.” It is a must read. Gets you up to speed fast and tells you what to ask your doctors. The book is available from Amazon. If you have trouble locating a copy, let the list moderator know.

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’t explain all the current treatments (See the Internet.), and all the pros and cons, get a new urologist.

4. Determine your goals, 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?

c. Discuss your goals with your significant other. She may have different goals, and hers may change yours!

d. Discuss your diagnosis with as many physicians (not urologists or surgeons) as you can, asking them this question (do not prompt them): If you had my diagnosis,

(1) what treatment would you have,

(2) who would do it,

(3) where would you go to have it done, and (4) why to those questions.

e. Contact the list moderator or his designated alternate. He will provide you with a list of previously afflicted list members and the treatments they selected so that you can consult with them on a one-on-one basis. Their experiences may help you in your treatment selections, keeping in mind that their priorities and available treatments may differ from yours. Also let the moderator know how much information about your situation you want released to other list members

f. Decide on a course of treatment.

g. Get it done as soon as possible.

h. Follow instructions for recovery/rehab, etc.

i. Adopt a healthy lifestyle – no cigarettes, low saturated fat intake, low refined sugar intake, take an aspirin per day, get lots of exercise, and plenty of rest. Lower stress levels. Between a good nutritional diet and dietary supplements, make sure you consume plenty of lycopenes, soy, omega 3 fish oil, IP-6’s and whole grains. Help your immune system to help you. Refer to our Prostate Cancer Prevention Guide for details (available from List Moderator upon request). The Guide applies after the fact as well.

j. Remember that none of us will get out of this life alive, anyway.

k. If you’re on speaking terms with God, have regular conversations. If you aren't’t on speaking terms, negotiate some terms.

l. Finally, 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 does your Assembly memorial.

5. Do all these things, and you’ll be able to enjoy life without worrying about it.

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.

2. Obtain a copy of your previous PSA scores from your doctor and watch for changes. A rise of 0.5 or more in one year or a rise in 20% or more from one year to the next 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, 60% or more of men will either die of PC, or have it when they die of other causes. The percentage may be higher for those who served in VN and were exposed to Agent Orange.

V. FOR THE LIST MODERATOR:

1. With the assistance of Frank Campbell, maintain list currency through timely submissions of changes to WP-ORG and provide list members with updated changes to the list at least monthly.

2. 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 treatment and post-treatment issues, by placing a (PC-XX) by their name on the list, where XX indicates the year of initial diagnosis.

3. Promote open, free discussion among list members while insuring the maintenance of appropriate levels of confidentiality and sensitivity to others.

4. 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.

5. 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. Should he choose to join or is already on the list, sort out with him the level of exposure with which he is most comfortable --

(1) moderator does not tell anyone on the list about the diagnosis, but provides him with a list of (PC-XX) members and their treatments so that he may contact whomever he wishes to seek guidance on selecting treatment options,

(2) moderator notifies only the (PC-XX) members 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-XX) members 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-XX) members of the situation and ask them to contact him. Similarly, moderator will follow up in a week.

6. Insure an alternate moderator is designated, known to the list as such, and kept informed of all appropriate ongoing list activities.

7. Maintain a confidential database of PC information received from list members.

8. 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.

9. Maintain a Treatment Selection Table of (PC-XX) members showing information on their initial PC diagnosis and the various treatments selected by them. Provide an updated copy of the Table to (PC-XX) members and to newly diagnosed classmates and inform them they should handle the information in a confidential manner and use it only for contacting selected (PC-XX) members for support and treatment advice.

10. Coordinate with the list member designated to maintain the PC web sites on use and content of the sites.

11. Interface with outside entities such as other class PC list moderators and representatives of PC study organizations to coordinate activities of interest to the list members.