Colorectal cancer disproportionately affects the Black community, who not only get the disease at an earlier age but are also at a more advanced stage when diagnosed.
That’s because an estimated 50-60% of Black people don’t get screened at all, either because they put it off or have competing medical illnesses to address, says Dr. Fola May, associate professor of medicine and health equity expert at UCLA Health.
Based on guidance from the Centers for Disease Control and Prevention, most doctors recommend everyone to get screened for colorectal cancer at 45, and even earlier if you have family history. Early screening can prevent unnecessary death for some patients diagnosed with colorectal cancer. The five-year survival rate with stage 1 colorectal cancer is over 90%, while the survival rate for stage 4 colorectal cancer is between 11-14%.
The American Cancer Society says survival rates are based on how far the cancer has spread, age, overall health, how well the cancer responds to treatment, whether the cancer started on the left or right side of the colon, and other factors can also affect your outlook.
For those who are diagnosed with late-stage colorectal cancer, Dr. May makes several recommendations that could impact a patient’s outcome and quality of life.
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- Look into your available options: Patients, especially those in large urban settings, should research the medical facilities available to them and seek care from the place that is best equipped to handle complicated or late-stage colorectal cancer. That includes places that have a special designation as an accredited cancer center where there’s a multidisciplinary tumor board of experts that discuss late-stage cancer and treatment options. “If it’s advanced colon cancer, you typically need chemotherapy or surgery, and if it’s rectal, you might need radiation as well,” says Dr. May. “With all these complexities, it’s best to receive care in a place where they have a lot of cases and experience.”
- Ensure you receive treatment in a timely fashion: Black people tend to have a longer period of time than other populations between when they’re diagnosed and when they’re treated—and it’s not clear why, says May. At times, it’s because of the health-care system a patient is in—it may take longer for referrals to get processed as well as for insurance companies to approve them. Your physician might also have to refer you to another health facility or center. But there’s also hesitancy on the patient side about getting treatment. “That leads to worse outcomes, so you have to make sure you or your family member is aggressive about seeing providers and getting that second opinion in a timely fashion,” says Dr. May.
- Strive for symptom control: Late-stage colorectal cancer comes with a host of digestive symptoms and pain, including constipation and blood in the stool, given how and where the disease And many patients are under the impression that their symptoms are expected—and don’t seek full symptom control, says Dr. May. She advises members of the Black community to advocate for themselves when it comes to pain control and seek therapies to make them comfortable. Far too often, patients don’t want to continue treatment because they’re uncomfortable. “But if you stop treatment, the cancer will keep growing,” warns Dr. May. “You have to get the symptoms under control so you can tolerate the treatment.”
- Seek genetic counseling: It’s important that people who are diagnosed with colorectal cancer think about the implications of their diagnosis on their family members. So it’s important for patients to talk to their doctors about whether they need to see a genetic counselor to discuss all the cancers that are in the family. Lynch syndrome, for instance, is an inherited disorder that increases the risk of colorectal cancer, stomach cancer, and gynecological cancers. “Unfortunately, in some Black communities, if one person gets colorectal cancer, it’s kept secret. In this case, secrets can be deadly for other family members,” says Dr. May. A genetic counselor could look at the family history, put all the pieces together, and realize there might be a gene in the family. “If you know you have that gene, we actually screen your family for cancer earlier, differently, and often, we screen for more cancers,” adds Dr. May.
- Consider clinical trials: Right now, there’s a shortage of Black individuals participating in clinical trials, and the science can’t tell us if potential treatments work if Black and Brown patients aren’t represented in the research, says Dr. May. She acknowledges some hesitancy might be warranted based on how Blacks have been violated in science, but there’s a lot more regulation these days. “You should consider clinical trials, and also ask your doctor if you’re eligible for clinical trials,” she adds.
- Look into palliative care: This is a field of medicine for people living with a serious illness. Palliative care refers to getting relief of pain and stress, with a goal of increasing a patient’s quality of life. “People associate it with death and dying, but it doesn’t mean that,” says Dr. May. “Many people graduate from palliative care and don’t die. It’s not hospice.”
- Emphasize the mental health of the caregiver: Caregivers are exhausted, says May, and while they’re not dealing with the cancer themselves, they’re on a rollercoaster, relaying information and going on appointments. But they need to make sure they’re taking time for themselves, eating right, exercising, taking care of their mental health—and getting away from the illness at times when they can. “The last thing we need is a late-stage cancer patient and a caretaker who isn’t able to cope,” says Dr. May. “We realize too late that the caregiver also needs to be taken care of.”
This article is sponsored by Bristol Myers Squibb. If you’re interested in seeing if you qualify for an active colorectal cancer study, visit bmsstudyconnect.com.
