There can be practical issues as well, including transportation, which can particularly be an issue if you live far from a major medical center and rely on public transportation.
For the early stages of anal cancer, the standard of care is a daily therapy combination of radiation and chemotherapy, but that’s hard for some people to work into their routine. “Radiation is given every day for five-and-a-half or six weeks, so a person needs to find a ride every single day, and it may become more difficult to stay on schedule, especially once they start to feel the effects of radiation, such as fatigue. It’s hard to get out of bed,” Dr. Morris says. “But, missing or delaying doses may affect the outcome.”
Getting the Right Anal Cancer Care as a Black Man
At any stage of anal cancer, there is no evidence that Black men have poorer outcomes, but only if they get the best care. To do that, they need to be their own best advocate. “Due to its stigma and rarity, a person diagnosed with anal cancer often has few resources to face the physical, emotional, and financial challenges,” says Justine Almada, cofounder of the Anal Cancer Foundation (ACF).
These challenges intersect with other barriers to health, such as racial obstacles. “Health equity for the anal cancer community means every person has the same access and ability to obtain best-in-class prevention, detection, treatment, follow-up care, and socioemotional support,” says Almada.
If you are a Black man with anal cancer who is looking for the best possible care and support, here’s some advice to consider:
Find the right team. Anal cancer is relatively rare, so it’s best to be treated where people have specific expertise. Almada recommends seeking care at a major cancer hospital, if possible, which has more resources and services to tackle the socioemotional, financial, and physical effects of the diagnosis. This includes social workers, who can help you navigate logistics, finances, and emotional resilience.
“Furthermore, major hospitals are more likely to have LGBTQIA+ focused providers,” he says. Morris agrees, because at a community hospital, there may be only one or two cases of anal cancer per year. “You want someone who sees more cases and who is up to date on the latest research,” Morris says.
Traveling great distances to a major cancer center can pose its own financial and logistical obstacles, though. One solution is to be treated locally by a team that consults with anal cancer experts. “Even if a patient is treated locally, major cancer centers can offer helpful information and assist with care decisions,” Almada says.
Ask about side effects and resources to address them. Chemoradiotherapy can cause hair loss, nausea, and radiation burns. If it is not successful at curing the cancer, surgery is usually next, which can sometimes lead to the need for a colostomy. “Connect to pain management early in the process,” says Almada. “Palliative care teams can help you navigate the physical and emotional challenges of a diagnosis, and we encourage all patients to discuss a referral with their care teams.”
Talk about sex with your care team. “There can be major issues that affect sexual function,” says Morris. Radiation can lead to anal stenosis, a hardening and thickening of the tissue, which can make receptive anal sex painful. But, he says, “There are dilators that can offset some of that stenosis.”
Erectile dysfunction can be a side effect, too. Rectal incontinence can also occur, although it usually gets better with time. A physical therapist trained in pelvic floor therapy can help with many of the sexual side effects. “It’s essential to have a provider who you feel comfortable talking about sexual health with,” says Dr. Multani.
Get connected. Almada started the ACF over a decade ago to help people find informed providers in their area and the support needed for their journey. The medical service helps patients navigate all of their medical and financial problems, get access to clinical trials, and identify centers of excellence near them. The foundation serves over 1,000 anal cancer patients annually and cooperates with the Farrah Fawcett Foundation, which was founded after the actress died from anal cancer and supports research and patient education, especially related to anal cancer and HPV. Finally, the National LGBT Cancer Network is an invaluable resource for any LGBTQ+ cancer survivor.
Find peer support. No one knows what it feels like to go through cancer better than someone who has been there. Ask your medical team if they can connect you with cancer survivor support groups that might work for you. One great resource is the ACF’s Peer to Peer Support Program, which matches patients and caregivers with others who have had similar experiences.
Reach out to family and friends. You may not be comfortable discussing — or even disclosing — your HIV status or anal cancer diagnosis with loved ones. But, find people you can talk to openly. Cancer can be lonely, and it’s much better when it’s not, so it’s important to remember that your friends and family are there to help you when you need it.
Be your own advocate. “If something doesn’t feel right, keep pushing, seeking another evaluation or getting a second opinion,” says Morris. “You know your body better than anyone else does.”