Introductory Letter for USMA Class of 1962
re Prostate Cancer Support Group
Classmates, August
22, 2006
“The time has come, the Walrus
said, to speak of many things….” [“Walrus
& the Carpenter” by Lewis Carroll]
The
time has now come for our Class of 1962 to start to pull together, as we have
before on so many other important issues, to support classmates with severe illnesses.
One of the more common ailments now is Prostate Cancer (PC). It has a recognized
increase of occurrence due to aging (and we all are). In fact, research
shows that by age 80, 70% to 90% of men have cancer in their prostate. And for those
of us who had the
At
a recent social function I attended, I happened to be talking with a member of
the USMA Class of 1958, who described to me a class initiative to establish a
Prostate Cancer Support Group for afflicted members of that class. He put me in
touch with ‘58’s Class Moderator, Stan Bacon, who has been very helpful in
sharing what they’ve attempted and how they’ve gone about it. They use a
restricted web-site (thru wp-org), where some of the general info parts are
accessible to all and individual-specific info is in a permission-only subset.
As the occurrences of PC within our own class have continued to grow, it
sounded like a very useful effort for our class, as well. Stan has been
sufficiently successful within his class that several other classes, from ’55
thru ’60, have each established their own Class Prostate Cancer Support Group,
and the Class Moderators remain in communication and coordination on relevant developments.
Their
intent, as would be for ours, has been to develop an active group to provide information
and support to those in the class who become afflicted with PC, and to
those wanting to learn more about how to prevent it in the first place.
Naturally, non-cancerous prostate issues such as BPH, or enlarged prostates,
are fair game as well. Although we should start with ‘58’s guidelines so
we can get underway with structure, faster, we are free to go in whatever subsequent
directions we feel our individual class should follow. As time goes on and
other issues arise, the Class could encourage similar support groups for other
ailments, building on this program.
The
true success of the group is highly dependent upon our ability to communicate
freely and openly with each other. But the issues we deal with are often very
personal and highly sensitive in nature. They include, but are by no
means limited to external assaults upon our masculinity, even our
mortality. Therefore, confidentiality and sensitivity are
the very cornerstones of our program. Personal issues stay within the
group and we are very mindful and respectful of each other’s feelings and
needs.
‘58’s
group grew rapidly to just over a hundred, or a quarter of their living
classmates and former classmates. Of those, 24 have been diagnosed with
PC from as early on as 1993 and as recently as this year.
Surprised? Don't be! There are probably a few more still out
there who haven’t announced, and regretfully, more to come in the future.
This is an issue that most people just don't like to talk openly about.
But there are 22 list members in ’58 who have been afflicted with PC, who have
courageously and selflessly identified themselves to the group and have availed
themselves on a one-on-one basis to provide counsel and assistance to those who
become afflicted and want help from those who have been there, done
that. And the system really works. Those from ’58 who have
identified themselves within their class as PC-afflicted have certainly been
appreciative of the emotional support they have received from close friends and
concerned classmates.
In
our Class of 1962, I know of three cases of PC in my company alone, two
successfully overcome; it has already claimed the life of at least one of our
classmates from another company just this year. Extrapolating leads to numbers
similar to ‘58’s. Others are undoubtedly busy fighting for their
lives. Many others have succeeded in getting their afflictions under
control before this list can be established, and we hope they will join in the
list to share their own specific “lessons learned” in their success so that
others may benefit.
We
are working to put our Class of ’62 Prostate Cancer Support Group together with
the initial support of two survivors (one as Alternate Moderator) and another
classmate who will bring his medical experience to help us laymen understand (try,
anyway) the medical issues and terminology.
It
must be clear to all, however, that this is to be a Support Group, not an
alternative to medical support from your own medical practitioners. We cannot
replace or substitute for medical diagnoses or treatments – not even our own PC
Support Group MD would attempt that without personal and in-person evaluation
and assessment; we intend to help you understand better, and to provide support
in the form of information and encouragement from those who experienced it already.
1.
This Support
Group’s Objectives are, initially at least, to:
a. Provide support to those classmates who have been newly
diagnosed 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.
c. 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, and we’ll
try to help ascertain relevance and import.
If you would like to learn more about prevention or if
you have become afflicted with PC and would like to receive support, please
review our “PC Support Group Guidelines” as they get published on our web site.
Also feel free to email me (jhmalley@adelphia.net
) or
Respectfully
offered,
Jim
“Moose” Malley Charlie
Shaw
PC Support Group
Moderator Alternate
Moderator
Attached: USMA
Class of 1962 Prostate Cancer Support Group Guidelines (First Draft)
Other PC-Related Links
USMA Class of 1962
Prostate Cancer Support Group Guidelines
(First Draft as of August 2006, with appreciation to Class of 1958’s earlier efforts)
1. This Support Group’s Objectives are,
initially at least, to:
a. Provide support to those classmates who have been newly
diagnosed 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.
c. 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, and we’ll
try to help ascertain relevance and import.
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 Prostate Cancer History Form (separately
available) 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 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. Reason: a diagnosis can’t be medically confirmed
without one, nor various characteristics of the particular tumor determined. 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. By far, your most accessible source is the Internet.
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. Hers 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 the 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, section V).
8. Decide on a course of treatment(s).
9. Get it done as soon as possible.
10. Follow instructions for recovery/rehab, etc.
11. 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. Just have it added it to the list of stuff already on the Rx for
the lab work associated with the annual physical we should all be getting
anyway. And you should have your
physician perform a digital rectal exam (DRE) , also known as the “finger wave”,
as part of the physical. This is the
companion diagnostic tool to the PSAT for early detection of PC. 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 PSA test (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.
V. FOR THE LIST
MODERATOR:
1. Promote open, free discussions among list members while ensuring 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. (Or,
if you’d prefer, we could have “Wolverines” or “Bears” or “Walruses” or
whatevers … just trying to inject a little levity in this otherwise urgently serious
subject!)
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. Ensure 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.
Other PC-Related Links [as
provided by Class of ‘58] |
|
Helpful Info on Specific Subjects:
·
Moderate Exercise: No Pain, Big Gain:
<http://www.west-point.org/class/usma1958-pc/ModExercise.htm>
·
Returning to Intimacy after PC Therapy
<http://www.west-point.org/class/usma1958-pc/PCReturn2Intimacy.htm>
Helpful
Institutional Web Sites:
Alternative
Approaches: