Anal cancer patients have a very rare form of cancer, and it is unlikely that they will find another patient in their community, or a support group dedicated to their cancer (with just over 5200 new patients a year in the entire US, this is understandable for anyone not living in one of the major US cities). A survey undertaken by CURE magazine in 2009 found that rare cancer patients were 50% more likely than non-rare cancer patients to turn to online social networking sites and blogs.
Here are some networking sites that you may find helpful. While some of us seek face-to-face contact and support, this is not likely to be possible with this cancer. The online anonymity may also make it easier at the outset to discuss this cancer – and everyone in your group will have the same cancer, ending any embarrassment about an anal cancer diagnosis.
Blog for a Cure: This site is inclusive of all cancers; members can be accessed by type of cancer. Anal cancer blogs are here. It is a collection of blogs, with interactive commentary attached (some comments are made private and only the recipient may see). You may choose to have your blog only visible to other registered users of the site, or to make it readable by others if you prefer. The individual blog structure of the site, and the email notifications of new posts, encourages participation. It is interesting to have commentary from members who may have other cancers but share cancer as an experience. In mid-2012 there were over 150 members with anal cancer.
Rare Cancer Alliance: This site covers a wide range of rare cancers, including an anal cancer forum. Registration is needed for most parts of the site. The Anal Cancer Support Forum is a collection of topics, with members posting and replying on personal or general issues about anal cancer. In recent months the activity has come to a near-halt, but it is worth checking this site to see if there are new posts.
Yahoo Anal Cancer Group is a large group of anal cancer patients, over 1000 in 2011, although very few seem to post. Members post questions and others reply; you can receive email notification of these messages, on a daily or weekly summary.
The American Cancer Society Cancer Survivors Network has an anal cancer group that is active, with several posts every day. You can read posts as a non-member, but must register to be able to have full access, including posting your own queries/story.
The M.D.Anderson Cancer Treatment Center created a telephone support line twenty-five years ago, and it is a very active network today, matching patients and caregivers with survivors who have similar cancer and experience, including age and gender if wished. You need not have been treated at M.D.Anderson to join the network; call them at 713-792-2553 or 1-800-345-6324, or email to email@example.com, or find Anderson Network on Facebook. Young people have their own Anderson site on Facebook, Cancer 180.
The Peer to Peer Program of The HPV and Anal Cancer Foundation was launched in 2014. See the website for information and to sign up for the program.
And for patients in Canada: you have Anal Cancer - A Bum Rap - a support group in Ottawa, with a very useful website; there is also an iPad version. "We provide whatever support, encouragement & advise we can to anal cancer patients from their initial diagnosis, through their treatment and then their life after treatment."