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MAILING LISTS

The 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.

If 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.

SITES DEALING WITH ALL ASPECTS OF PROSTATE CANCER

YANA FORUM The 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

HEALING 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.

PROSTATE 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.

PROSTATE 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.

PROSTATE 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.

NEWLY 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.

ASK 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.

PHYSICIAN 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.

SITES DEALING WITH SPECIFIC THERAPIES

SURGERY - 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.

EXTERNAL 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.

PROTONS 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 disease.

SEEDPODS- 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.

ICEBALLS- A site offering a miscellany of basic information about cryotherapy with an associated moderated low volume MAILING LIST.

ACTIVE SURVEILLANCE - Although 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 diagnosed men.

ANDROGEN 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.].

SITES 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.

PROSTATE 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.

PROSTATE 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 cancer groups.

FRANK TALK - 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.

BETTINA ARNDT FORUM A forum where sexual issues are openly discussed with the guidance of Australian sex therapist and author Bettina Arndt.

ADVANCED PROSTATE CANCER A Yahoo based group with 785 members providing information and support for men who have failed primary treatment or who have been diagnosed with late stage prostate cancer.

THE CIRCLE 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 Spirit is a mailing list for those who want to share spiritual support as they live with prostate cancer.

PROMISE 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.

HUMOR 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.