The Palpable Prostate: Community Resources

Thursday, March 1, 2007

Community Resources

[updated September 18, 2008]

The community resources here are excellent. You can't afford to miss them. Be sure to network as soon as possible after being diagnosed to get connected to good information, doctors and hospitals and to help you make decisions:

1. Case Histories

See this blog post:
http://palpable-prostate.blogspot.com/2007/02/case-histories.html

2. Online prostate cancer discussion groups. A 2007 paper in the Journal of Medical Internet Research discusses internet groups such as these and found that the primary reason people use the lists is to exchange information and that such exchange is generally successful. The paper can be found here and the prostate cancer discussion gorups are listed here:

ACOR's PPML discussion forum for prostate cancer:
http://ppml-info.org/ http://listserv.acor.org/archives/prostate.html .
Usenet group on prostate cancer:
http://groups.google.ca/group/alt.support.cancer.prostate

Prostate Pointers lists:
http://www.prostatepointers.org/mlist/mlist.html

3. Support groups

National groups and local groups with web sites listed. Local groups can be located through the national groups. Some national groups like US Too have international chapters too. The * and + after the organization names are links to the newsletter and other information, respectively, for that group.

In addition to finding local information this list can be used to find non-local information generated locally. A ! after a link means that it may be of non-local interest. !! are the most interesting links. Thus browsing the !!, and possibly the ! sites as well, may lead you to a variety of useful patient-generated information. Cincinnati including their newsletter and their link collection (also listed in the right colunn of this blog as 100+ Prostate Cancer Links) is particularly noteworthy. The KS Wichita chapter has interesting material on advanced cancer.