People with a rare cancer can find it frustrating that their disease is unknown, but it’s even harder when it is associated with stigma or embarrassment. Anal cancer can be stressful and isolating. Now, anal and colon cancer advocates are joining forces online to dedicate March 21st to anal cancer awareness.
The idea began with people with direct experience. Treated for anal cancer, advocates Calvin Nokes and Helene Hutchings have explored different ways to bring more attention to this rare malignancy. Calvin helps run the Anal Talking group on Facebook. Helene is an active member of the social community Colontown for patients and caregivers and is founder of the Canadian support group, ABumRap. Both have been very vocal in trying to galvanize more people to recognize the specific needs of anal cancer patients.
Social media and connections helped facilitate collaboration with the Colon Cancer Alliance to focus on anal cancer March 21st. One of the best established advocacy groups for colorectal cancer in the U.S., CCA gets it—there is a great deal of overlap in some aspects of the patient experience for anal cancer and colon cancer. The two diseases also benefit by being able to engage surgeons, oncologists, gastroenterologists, and many other health professionals that treat both types of cancer.
March 21st is the spring equinox, symbolically bringing rebirth and life along with warmer weather. It seems the perfect time for cancer advocates to bring attention to ways we can improve the lives of anal cancer patients. It may start as just one day, but it shows how dedicated people with rare diseases can use digital communication tools to work with other cancer advocates and create community where it didn’t exist before.
Patients, caregivers, and advocates can make great partners for oncologists to effect change. Whether it’s research, patient education, addressing the issues of stigma, exploring ways catch this disease earlier for better cure rates, or anal neoplasia screening—all these issues deserve their day in the sun. During colorectal cancer awareness month, it seems like a good time to discuss how we can make the cancer experience better for anal cancer patients, too.
What do you think about how to best help advocate for patients with rarer diseases?