7 Ways Black Americans With Metastatic Colorectal Cancer Can Find Support

Candace Henley was diagnosed with colorectal cancer in the summer of 2003, just shy of her 35th birthday. Although she completed surgery and radiation, the treatments came at a high cost.

Soon afterwards, Henley, a Black woman living in Chicago and mother to five children, lost her job as a municipal bus driver, and couldn’t obtain medical insurance. She was also denied Social Security disability coverage.

Other setbacks followed — Henley also lost her car, her home, and her husband. When she was fit to work again, “No one would hire me,” she says.

Henley had only spoken to a psychologist once, after she was first diagnosed. After that, “No one ever talked to me again,” she said. “And I could have used psychosocial support. When I was losing my home, I tried to commit suicide.”

Finding Help After a Colorectal Cancer Diagnosis

After her attempted suicide, Henley rallied to put her life back together. She stayed with friends and relatives, found employment, and moved her family into an apartment. Back on her feet, she became determined to help others.

In 2006, she started volunteering as a colorectal cancer advocate. In 2010, she organized a Blue Hat Bow Tie Sunday event at Trinity United Church of Christ in Chicago to raise awareness about colorectal cancer among minorities and underprivileged people and provide resources. By 2015, her work blossomed into the Blue Hat Foundation, which now sponsors events at 15 regional churches in the Chicago area and provides national support online. She experienced a cancer recurrence the same year, but is now in remission.

Henley knows firsthand how important support is for people with cancer. “Psychosocial support is critical in combating loneliness, depression, all those feelings that can come with a cancer diagnosis,” says Lisa Simms Booth, executive director of the Smith Center for Healing and the Arts, a Washington D.C.-based center that develops healing practices for people with cancer. Booth was motivated by her own mother’s eight-year battle with ovarian cancer.

“I saw the emotional toll [cancer takes],” she says. “I don’t think anyone ever mentioned to my mom that there is a support group.”

How to Find the Practical and Emotional Support You Need

If you are a Black person facing metastatic colorectal cancer, here are ways to find support:

1. Ask your primary care doctor, oncologist, or other members of your care team about which services are available to you. There are organizations that can connect you with case managers, patient navigators or social workers. They can help you manage your appointments, finances, and insurance issues, as well as get you connected with programs that can help pay for housing and transportation, and provide psychosocial support.

“Patients with higher anxiety and stress levels have more complications and worse outcomes,” says Heather Yeo, MD, a colon and rectal surgical oncologist at Weill Cornell Medicine in New York City. “Mental health providers for cancer patients can help with strategies to deal with acute stress.”

She recommends that people with colorectal cancer ask their care team about local support groups and other resources, which can be particularly helpful for people with metastatic cancer.

2. Reach out to family and friends. “In the Black community, there can be this stoicism, this idea that ‘we can handle it,’” says Booth. “I was raised with this. But a cancer diagnosis can be very lonely, and a life-altering moment for the family.”

Says Henley, “If someone is offering to help you, let them help you — even if it’s just watching the kids for a while.” Bring a friend or a family member to doctor appointments, she adds. “That person can ask questions and make sure everything has been heard and understood.”

3. Speak up. “Studies show that minority patient symptoms can be downplayed, attributed to other things, or misinterpreted,” says Dr. Yeo. “This can mean you don’t get needed help in managing side effects from cancer treatments.” If you experience outright racism, report it to the management at the care center, says Henley. “Nothing ever changes if we don’t report it. Everyone deserves the same kind of loving care and equal treatment, regardless of who you are.”

4. Find online resources. Reach out to national organizations such as Fight Colorectal Cancer, the Colon Cancer Coalition, and the Colon Cancer Foundation and Henley’s Blue Hat Foundation. “We provide food, clothing, patient navigation, help with finding clinical trials, and even help paying for medications by looking for services in the community that are free,” Henley says.

5. Look to your faith. “For those with religious or spiritual beliefs, faith can be quite comforting,” says Henley. “Prayer can give us peace to accept the situation.” Many religious institutions of all faiths now have cancer ministries that offer support, such as visiting patients in the hospital.

6. Keep up healthy habits. It may not be easy, but do your best to sleep well, get enough exercise, and eat healthy — all of which will help with your recovery, says Dr. Yeo. Ask your care team for a referral to a nutritionist, who can help you stick to a healthy diet, despite any side effects you may experience from the treatment, she adds.

7. Keep hope alive. “I have a lot of hope for people with metastatic colorectal cancer,” says Yeo. “I have patients who have had metastatic cancer and who I am taking care of for more than 10 years. Some are cured. With better understanding of cancer genetics, immune therapies and surgery, we are making progress.”