This website is a work in progress by an anal cancer patient, diagnosed in May 2010 and treated in summer 2010, recovered to the "new normal." (It WILL happen!) The goal was to assemble as many resources – web-based and print – as possible, along with my own compilations on subjects such as side effects, based on my research, my own experience, and the experience of many other patients sharing on the blogs listed on this site. My own diagnosis was for the most common form of anal cancer in the US, a squamous cell anal carcinoma (SCAC), and most of the postings here relate to that form of anal cancer. Another form of anal cancer, cloacogenic carcinoma, accounts for about one-quarter of all anal cancers. This cancer develops between the outer part of the anus and the lower part of the rectum, and as it begins in cells similar to the squamous cells, it is treated in the same way as SCAC. The very rare adenocarcinoma, developing in the mucus glands, may have more immediate surgery; but many of the issues associated with treatment of SCAC, such as the difficulty in discussing the diagnosis, also apply for these patients, and I hope they will find some parts of this site helpful. For more on the forms of anal cancer, see this overview from the American Society of Clinical Oncology.
My cancer treatment center is not a research center and provided very little reference material. I like and trust my doctors, and I realize that they do not have time to pull together material for a cancer that is so rare they may see very few cases in their professional lives. Their focus has to be successful treatment. And, they are not patients. They have never experienced the treatment and its side effects. Some questions can only be asked- and answered - by patients! (Of course, doctors do become patients - and have the same problems as the rest of us.) I have found from exchanges with other anal cancer patients that very few cancer treatment centers include any significant help for recovery and survivorship in their operations. So, I embarked on this website journey. The cancer experience is scary, even if you find it brings you gifts of understanding and gratitude for learning to more fully appreciate each day; David Rakoff explains this brilliantly in his essay, "The Waiting". It is less frightening if you do not have to go down this road alone.
If you are newly diagnosed with anal
cancer, or are a friend or family member (and possible caregiver), please also visit the HPV and Anal Cancer Foundation website. This site was created by the Almada family, children of an anal
cancer patient who lost her battle with this cancer in 2010. It is
the only foundation dedicated specifically to increasing knowledge
and awareness of anal cancer, and promoting greater research
attention to it. Please support them if you can. (Disclaimer: I am
not related to the Almadas and have no interest in the foundation,
other than to make donations to it. You will find my story there.) The foundation is always interested in hearing from anal cancer fighters and survivors: "We are currently collecting data from the medical community to generate a research agenda, we will share details of this when we have all the information. We would like to hear from you, the patients about what services you need, and how you think we can improve patient outcomes." You can reach them here: analcancerfoundation@gmail.com. The Foundation has also sponsored an online discussion about an anal cancer "ribbon," and you can download versions of the winning purple and green. My favorite is the one with the motto "Kick Cancer's Ass!" The Foundation sponsored an inaugural internationl scientific meeting on anal cancer in 2013; see the report here.
I am not medically trained, but hold a Ph.D in political science from the University of Wisconsin. Years of study and publishing taught me the basic principles of good research, and I have used that experience in winnowing through the internet and the books on cancer treatment and survival. The sites that I link to are generally medical center websites, cancer research organizations in the US and overseas (particularly the UK and Canada, which seem to do less “talking down” to patients), and other sources of information subjected to review and testing. To the best of my ability, none of these sites offer unproven or irresponsible proposals for cancer treatment. Several colleagues from the Blog for a Cure (see the Anal Cancer Groups page) have provided extensive advice, which I've incorporated - thanks especially to Tyndall, herself a nurse, and Merrill! An additional benefit of joining an online group is the ability to ask questions about diagnosis and treatment to people who have had experience with this cancer as both professionals and patients, and get help if you think you have been misdiagnosed or mistreated.
If you have comments or suggestions for links (I'll be happy to credit you if you like) please send them to me through the contact tab, and thank you! I will be happy to correspond by email if you are going through treatment or recovery and would like to talk with a fellow patient.
The purpose of this site is to help you find the information you need as you cope with concerns about symptoms or a confirmed diagnosis, treatment, and recuperation. Anything you find here or elsewhere on the internet should not be considered medical advice, but rather an aid to your discussions with your oncologists and other members of your medical team.