Our gastrointestinal tracts are horribly neglected. Even as we obsess publicly about what we cook and eat, observes science journalist Mary Roach, how we eat and digest remains a matter of embarrassed ignorance. Feeding, and its “unsavory correlates,” she argues, are as taboo as mating and dying. Why else would anal cancer be seemingly the last to acquire its own charity (in 2010)…?
— James McConnachie, Sunday Times book review of Gulp: Adventures on the Alimentary Canal by Mary Roach
Welcome! Though you may not want to be here, we are happy that you found us. You or a loved one may have recently experienced an anal cancer diagnosis and probably have more information about something you had never previously heard about before than you thought possible. You may have mixed emotions surrounding things you have read and heard about your diagnosis—that is ok!
We have a rare cancer and I guess no one wants to talk about anal cancer. I even told my sons to just tell everyone I had stomach cancer. It seemed easier. My boss didn’t want to hear it either,
Our community is filled with a diverse group of people from all walks of life, with various backgrounds and experiences. Some of us have risk factors associated with anal cancer and some don’t. Some of us have an easy time speaking with friends and family about a part of the body that rarely sees light, and some of us don’t. Some of us may know others in the community who have experienced an anal cancer diagnosis and some of us don’t. One thing is for sure; you are here because either you or a loved one is facing an anal cancer diagnosis—just like visitors to this page before you, and those visitors who will come after.
Most people know little to nothing about anal cancer, partially because it is less common compared to other cancers. This is part of what can make this diagnosis confusing and may make it difficult to share. Every time you tell someone about your diagnosis you may feel the need to educate them on anal cancer. Remember that it is not your responsibility to provide a health lesson to everyone with whom you share your diagnosis. Rather, it is your choice whether you do so or not.
Every person experiences anal cancer differently. Some parts of anal cancer may make it more difficult for some to share their diagnosis than for others. We know some community members have feelings of stigma associated with their diagnosis. We spend some time here addressing the most common concerns we hear from thrivers.
No one wanted to talk about anal cancer, or even say the word anal. I found that there was much shame associated with that part of our body, and mostly people don’t talk about it. I really needed to talk about what was going on with me, to get my feelings out.
Feelings of stigma may be related to the anus being associated with the elimination of bodily waste and the risk factors associated with anal cancer, including HPV and sexual activity. These factors may contribute to some people’s feelings of embarrassment—but they shouldn’t! That is why it is important to understand anal cancer. Not only has the taboo associated with this part of the body made it difficult for people to disclose a diagnosis to family and friends, it has prevented equitable resources and funding for support, research and better treatments.
If you want to share your diagnosis (and even if you don’t), please keep in mind that anal cancer is not a badge of shame. No one is ‘responsible’ for their cancer, and this disease can strike anyone: young, old, rich, poor, all races and sexes, vegans and meat-eaters, smokers and non-smokers. There is no group that is immune, and in fact the only immunity that we know of is in the form of the vaccine to prevent HPV and the cancers it causes for the next generation.
It is not a sign of weakness to ask for help. Talk to your doctors or counselors at your medical center for support and care resources. If you would like to connect with a fellow anal cancer thriver, you can participate in the Foundation’s Peer to Peer Support Program and/or pursue the support resources we list on our website.
Your treatment and recovery will be stressful. Don’t add to that stress by feeling that you must share your diagnosis if you would rather not, or alternatively by feeling that the diagnosis is shameful and you have to hide it. The most important thing is to understand your own disease and prepare for treatment, so that you can return to good health!
At the Anal Cancer Foundation, we believe strongly that with awareness and information, we will end the stigma around anal cancer.
For more information, see About HPV and Living with Anal Cancer. The Newly Diagnosed page may be a good place to start. Feel free to Contact Us with any questions.
Looking for someone to talk to about your anal cancer diagnosis? We are here to help. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.