suggestion is made in SURVIVING PROSTATE
CANCER to LOOK FOR SUPPORT
by joining one of the many support groups. Some men feel uncomfortable about discussing
personal issues face to face; some live in areas where there is no such group.
For those men there are many places on the Internet - so called Forums or Mailing
Lists - where they can "talk" to people dealing with the same issues.
For other men, these Internet sites are used in addition to joining support groups
and contacting the Yana men who have shared their stories.
you have not used a Forum or Mailing List previously it worthwhile to read the
FAQ - FREQUENTLY ASKED QUESTIONS
on the subject. A selection Forums or Mailing Lists focusing on prostate cancer
are shown below. Where membership details are available the number of members
at November 2012 is shown.
DEALING WITH ALL ASPECTS OF PROSTATE CANCER
forum associated with this site. There is no requirement to register and the site
is not moderated. This means that - posts appear as soon as they are entered.
The site is for the discussion of anything to do with prostate cancer. There are
only three rules: no commercials, no harvesting of addresses and no flaming -
posters are asked to be polite at all times. This is a fairly low volume site
- most posts will attract about 50 - 60 'views' and a small number of responses
WELL FORUM Registration is required on this very busy forum. There
has been some criticism that it is focused very much on surgery and for this reason
they may not be much support for alternative procedures. But generally there are
some knowledgeable and helpful people who are regular posters and who do their
best to help anyone trying to come to grips with the issues that come with prostate
cancer. The Forum is not moderated but the rules are strictly applied. Posts that
do not comply may be removed from the site - as may repeat offenders.
CANCER UK MESSAGE BOARD
- British based and therefore of particular interest for
people in Britain, this Forum nevertheless has international members and covers
a broad range of prostate cancer specific discussion groups. The site clams 6,566
members and is a little confusing at first in that there are several what might
be termed 'sub-boards'. For example Diagnosis, Treatment, Life with Prostate Cancer
all have their own sections (there are others) which can make it a little difficult
to decide which section to place the post.
CANCER SUPPORT Is
a Yahoo based Forum which will require you to register with Yahoo. If you already
have a Yahoo account, you can join in immediately. This List does not have as
high a volume as the Healing Well Forum but has 1,435 members. A wide variety
of subjects are discussed and as the site has a number of British members, some
of the focus is on issues related to prostate cancer in Britain.
PROBLEMS MAILING LIST This
is an unmoderated Mailing List with 1,341 members who discuss problems and treatments
related to the prostate gland. Signing on is simple. Discussion includes symptoms,
diagnosis, treatment alternatives, complications and personal impact. The intent
is to help patients and their loved ones understand their illness and make informed
treatment decisions; to encourage self-study of the effects and treatment of prostate
diseases; and to support research into the cause and cure of prostate problems
as well as encourage effective health care. Once you have signed on you can access
the archives going back many years.
DIAGNOSED - NEWDX -
This moderated low volume list is intended to offer information and support to
those newly diagnosed with prostate cancer. Experienced PCa patients who want
to help the newly diagnosed are encouraged to join. It is not clear how many members
there are, but there are very few posts, possibly because newly diagnosed men
tend to be lurkers for some time after they have had their initial diagnosis.
QUESTIONS. This is an unusual kind of notice board where you can
go to The "New" Prostate Cancer Infolink and ”Ask Arnon” or “Ask Arthur”
or “Ask Amy” questions about prostate cancer. They will do their best to answer
any questions you want to raise. The questions and answers are posted for all
to see in date order. Reading through them can offer learning opportunities for
visitor, as well as for the person asking the question.
TO PATIENT - P2P
This mailing list was intended to provide the opportunity to discuss specific
prostate cancer issues with Dr Stephen Strum or one of a panel of expert doctors.
Any question had to be accompanied by a FULL
AND DETAILED SUMMARY. This was a moderated list and never achieved
high volumes. It is not clear if it is still operating as there are very few posts.
It can be worth the effort of preparing the medical summary since the advice given
is high class as will be seen in the archives.
DEALING WITH SPECIFIC THERAPIES
- RP - A moderated mailing list dedicated to the needs and concerns
of radical prostatectomy patients. The sole purpose of this list is to narrowly
focus on the concerns of those who have already had an RP or have selected RP
as their treatment, although many posts veer off subject. A low volume list.
BEAM RADIATION (EBRT) - A moderated low volume mailing list for
discussion and support for patients interested in any form of radiation therapy
for prostate cancer.
FOR PROSTATE CANCER - Low volume Yahoo forum with 285 members.
The aim of this group is to provide information regarding proton beam therapy
for prostate cancer, and to help anyone learn more about the treatment and the
A moderated low volume mailing list is offered on this site for those interested
in brachytherapy (radioactive seed implants) as a treatment for prostate cancer.
There is a good deal of material on the site to help gain an understanding of
this treatment option.
A site offering a miscellany of basic information about cryotherapy with an associated
moderated low volume MAILING
labeled with old terminology as Watchful Waiting - WW this
moderated low volume list is intended to offer information and support to those
men considering active surveillance. There are very few posts, because it seems
that men taking this unusual option tend to be lurkers for even longer than newly
DEPRIVATION THERAPY (ADT)
- This moderated low volume mailing list is
label Hormone - CHB.
The term CHB referring to Combined Hormone Blockage more commonly known as ADT
(Androgen Deprivation Therapy). The offers discussion and support for patients
interested in any form of hormonal blockade. This includes: orchidectomy or medical
hormonal blockade [Lupron, Zoladex, Casodex etc.].
DEALING WITH SPECIFIC GROUPS OR INTERESTS
A PROSTATE CANCER FORUM
FOR LADIES ONLY A forum dedicated to educating women about prostate
cancer; its treatments and side effects with 511 members. This is of particular
interest to the wives and female partners of diagnosed men.
CANCER UNDER 50
A small Yahoo group with 240 members. Since men are being diagnosed at an earlier
age, this site focusses on the issues of younger men.
CANCER AND GAY MEN A fairly busy Yahoo forum with 866 members -
a mixture of gay, straight and bisexual men, although the majority are gay. One
of the main comments from the straight men in the group when asked why they chose
to join a gay group is that it is a younger crowd which discusses treatment and
sexuality after treatment more frankly and openly than most straight prostate
A website dedicated to helping Prostate Cancer patients deal with Erectile Dysfunction.
While this site is primarily for Prostate Cancer survivors, any man with a question
about ED is more than welcome. This site lives up to its name - do not visit if
you are at all offended by frank, blunt, real-guy talk about sexual matters.
ARNDT FORUM A forum where sexual issues
are openly discussed with the guidance of Australian sex therapist and author
PROSTATE CANCER A Yahoo based group with 785 members providing
and support for men who have failed primary treatment or who have been diagnosed
with late stage prostate cancer.
A website that offers support for wives, families, friends, and significant others
of men with prostate cancer-and, of course, the men themselves. The site lists
resources and the opportunity to join a mailing list, moderated and low volume.
Spirit is a mailing list for those who want to share spiritual support as they
live with prostate cancer.
A mailing list for those grieving a loss. Also offers help and support to those
with a spouse, partner, or family member in the last stages of life.
AND HEALING Laughter can help us all. HAH is a humor list for the
online prostate community, more intimate and friendly than the big Internet joke
lists - very few of the jokes are prostate related for those go to TROOP-C.