For almost eight months, Jenna Scott had the ideal pregnancy. Then the bleeding, dizziness and abdominal pain started.
Scott, 29, feared something was wrong with her baby, but her OB-GYN told her everything was fine after her appointment. Her baby could be sitting on her organs or perhaps she was experiencing typical pregnancy-induced hemorrhoids. The abdominal issues were explained as routine pregnancy aches and pain.
Having never been pregnant, Scott didn’t know what was normal. But even after giving birth to her son, Cameron, the rectal bleeding continued, and Scott was exhausted. She was told the intense fatigue was normal for a new mother and she still could be suffering from hemorrhoids.
When nothing changed a year after giving birth, Scott realized she needed to see a primary care physician. There, she received a referral to a GI specialist who ordered a colonoscopy to rule out more significant issues. Instead, the test confirmed something no one expected — at 31, Scott had colon cancer. She’d later learn it was stage 4.
Read: My Doctor Dismissed My Colon Cancer Red Flags as Normal Pregnancy Symptoms >>
Scott knows her younger age, healthy lifestyle and lack of family history of colon cancer made it less likely for a provider to offer screening, even though her rectal bleeding and abdominal pains were typical colon cancer symptoms. She’s not entirely sure if racial bias played a role, although she was a Black woman with a team of all white male doctors. Scott said the providers at her OB-GYN practice were very apologetic when she told them about her diagnosis.
Still, Black people are less likely to report receiving a colon cancer screening recommendation from their physician and they’re less likely to get screened, raising questions as to whether provider bias contributes to worse outcomes for many people of color. Native American and Alaska natives have the highest rates of colorectal cancer, followed by Black men and women. Black patients had the highest mortality rates for the disease.
Renee Williams, MD, MHPE, a gastroenterologist with NYU Langone Health, has examined possible reasons why Black patients were less likely to get a recommendation for colon cancer screening and referrals to surgical and cancer services. She said bias may come into play if a provider thinks a patient doesn’t want screening or can’t afford it, especially if they’re uninsured, but she sees social determinants of health and other external factors playing a bigger role in screening disparities.
Screening is extremely important because polyps can be removed before they turn into cancer, and survival rates are high if colorectal cancer is treated early. Routine screening has caused the colon cancer mortality rate to drop for multiple decades.
“Provider bias definitely exists, and it exists in all physicians regardless of their background, but I think it’s more than that,” Williams said. “Often, the providers just don’t have a lot of time. If you have 20 minutes to see your patients and they have diabetes, high blood pressure or heart disease, a lot of your time is spent dealing with that. Discussing routine screening may become less important.”
Food swamps, food deserts and lack of access
Obesity is a risk factor for colon cancer, and a study of more than 3,000 communities found that people living in a food desert, where there is little to no access to affordable nutritious or fresh food, or a food swamp, an area with a high ratio of convenience stores and fast food restaurants compared to grocery stores, had a higher risk of obesity-related cancers. Areas with food deserts or food swamps also have higher poverty rates, more individuals with obesity and a higher percentage of non-Hispanic Black residents.
Residents of those areas could also be less likely to have regular employment and have lower levels of education and health literacy, making it more difficult for them to advocate for themselves with providers about cancer screenings and treatments.
The removal of race and ethnicity data from clinical algorithms and medical technology that contribute to health inequities has improved racial bias in some areas. But some researchers have questioned whether that could also lead to worse colorectal cancer outcomes for Black patients in the future because they might not be flagged for screening recommendations.
Read: Racial Bias in Medical Technology Can Create Health Inequities >>
Williams noted two significant efforts that have proven effective in reducing racial disparities in colon cancer screening and mortality rates. In 2002, the state of Delaware launched a statewide program that included coverage for screening and treatment, helping cut the percentage of Black individuals diagnosed with colorectal cancer and almost eliminating racial differences in mortality rates. New York City’s Citywide Colorectal Cancer Control Coalition (C5) has also reported similar increases in screening rates for Black patients.
Community-based efforts such as offering information at churches, health fairs and other areas in places of trust can also help increase screening rates. Some health networks send text messages to patients when they turn 45 suggesting they get screened for colon cancer and linking them to a scheduling option.
On the individual level, Williams suggests that patients themselves introduce the topic with a provider.
“If you are at average risk and you’re 45, you can open the conversation by saying ‘I’m interested in getting screened for colon cancer. What are my options?’” Williams said.
Scott’s journey
In 2021, colon cancer screening guidelines were lowered to age 45 because the rise of colon cancer in younger people like Scott is a growing concern.
Scott’s life has been marked by rounds of surgery, chemotherapy and trips to the emergency room for much of the past seven years. She was often in the hospital alone because her husband had to care for Cameron or because isolation protocols limited visitors during the Covid pandemic. Cancer spread to Scott’s liver and lungs, and she developed melanoma on her foot, requiring surgical removal of part of her heel.
There were some moments of relief — for a 1½-year period from 2021–22, Scott was cancer free and thought her life was returning to normal. In December 2022, however, cancer was found in the lymph nodes in her chest and the area between her lungs. Her providers told her she’d need to undergo three straight days of chemotherapy with three-week breaks in between for the rest of her life.
Although Scott said she wouldn’t have thought to ask her providers for a colon cancer screening, she said if she could do things differently, she would have pushed harder for answers. She encourages others to do the same.
“Tell your doctor you aren’t leaving until they look deeper into your issue because you know your body and that something is wrong,” Scott said. “And, make sure you go to a primary care physician even when you’re pregnant. You have to do your best to advocate for yourself and always get a second opinion. I just wish I would’ve known.”
Resources
This educational resource was created with support from Merck.
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