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.
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