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 unless you are in a very large urban area. 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. In addition some cancer fighters find it helpful to create their own blog to cope wih the diagnosis and treatment, blogging their way through cancer.
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- l2016 there were over 305 anal cancer members. BFAC was listed as one of the best cancer blogs by Healthline in 2014 and again in 2015, 2016 and 2017! Check it out!
HPV and Anal Cancer Foundation Peer to Peer program provides a way for new anal cancer patients (or survivors who need a connection) to talk to fellow patients and recovered “thrivers.” The Foundation offers extensive information on patient groups and information resources here.
The American Cancer Society Cancer Survivors Network has an anal cancer group that is active, with several posts every day. You must register to participate in this group, including posting your own queries/story.
The M.D.Anderson Cancer Treatment Center created a telephone support line twenty-five years ago, and today it is a very active patient support group, My Cancer Connection, 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; call them at 713-792-2553 or 1-800-345-6324, email to myCancerConnection@mdanderson.org. Young people have their own Anderson site on Facebook, Cancer 180.
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."
A Facebook search will show several evolving groups, such as Anal Cancer Chat, and Anal Cancer Support, including one for Australia, and there is also a group for colostomy patients.