Getting Black and LGBTQ+ Communities Screened for Colorectal Cancer
After her own bout with a delayed diagnosis, advocate Paula Chambers Raney is on a mission to ensure Black and gay women like herself get the diagnosis and care they need.
In late July, Paula Chambers Raney found herself somewhere she could never have imagined: the White House. Paula, a 53-year-old election judge from Houston, was there as part of President Biden’s reignited “cancer moonshot” program, which aims to slash mortality rates and “end cancer as we know it.”
Paula, who overcame a bout with colorectal cancer in 2015, spoke to business leaders and government officials gathered there about her experience as a young Black lesbian, and urged policymakers to fund research on the disease and to ensure equitable access to screenings.
When she can, Paula shares her cancer story in local hospitals, at LGBTQ+ health events, with local politicians, as well as on social media.
Black Americans are 20 percent more likely than white Americans to get colorectal cancer, and they’re 40 percent more likely to die from it, according to the American Cancer Society. Social determinants like poorer diets and less access to quality medical care, among other factors, have led to higher rates of colorectal cancer in the Black community.
Colorectal cancer, at one time typical in older populations, is on the rise in younger people. Actor Chadwick Boseman's startling death in 2020 due to colorectal cancer at age 43 brought attention to the rising rates of colorectal cancer in people under 50, and in Black Americans.
But old stereotypes die hard. Many still think of it as an “old white man’s disease,” says Paula. She did, too. But that was before she was diagnosed at age 44, after her symptoms went ignored by physicians for far too long.
Dismissed and Ignored
Paula first began experiencing symptoms when she was 44. It started with severe gas, which became more frequent over time. Within months she was also experiencing darkened stools, intense pain on her right side, weight loss, and constant stomachaches. One doctor she saw diagnosed her with irritable bowel syndrome while another blamed her diet. When a fecal immunochemical test (FIT) showed blood in her stool, she was told she had hemorrhoids. Once, in the emergency room, a doctor even accused her of exaggerating her pain in order to get opioids.
During that time, she saw “upwards of 20 different doctors,” Paula says. Part of the problem was that none of her doctors talked to one another. She had missed work so much due to chronically feeling unwell that she lost her job, and therefore her health insurance. This forced her to get care from the rotating physicians at the county’s clinics. Yet despite the many doctor visits, no physician recommended a colonoscopy nor suggested she might have cancer. “Not one of these doctors mentioned the word,” Paula says.
This was a missed opportunity, says Dr. Carethers. “Black patients have among the highest incidence and mortality rates from colorectal cancer, and finding it early has a very large impact on survival,” Carethers says. “A person with symptoms should be immediately evaluated irrespective of their age.”
Things came to a head the day after she married her high school sweetheart in a small ceremony in New York City. She and her wife were attending a Broadway play when she felt the room spinning around her. They quickly returned home to Houston, where she’d previously received care. But this time, the doctor she saw performed a colonoscopy, an exploratory test which involves threading a scope and a camera through the colon in order to visualize abnormalities. The doctor spotted a cancerous tumor the size of a baseball.
Because her case was complex, it was brought to a working group of oncologists that included experts from the MD Anderson Medical Center, a large, comprehensive cancer center in Houston. Normally, she would have received chemotherapy and radiation to shrink the tumor before surgery. But the doctors were so concerned the cancer would spread, they removed it surgically, right away. Fortunately, the dozens of lymph nodes taken out during the operation, along with the tumor and 9 inches of intestine, showed that the cancer had not spread, as they’d feared.
The doctors initially had feared that her cancer was stage 3, but with no evidence of it spreading, it was designated stage 1, which is considered easier to treat. All the scans Paula has had since reveal her to be free of disease.
The Road to Advocacy
Although the surgery was a success, Paula was mad. “What might have happened if someone a year earlier had said, ‘Let’s test this woman for colon cancer,’” she fumed. That fury has fueled her desire to increase awareness about the disease. “I was angry about my own situation, and even more when I met others who had similar experiences, some with much worse outcomes,” she says.
Her message: Black Americans, especially those under 50, should recognize the importance of colorectal cancer screenings and learn the various options they can choose from. This message to people between 45 and 50 is critical because for years screenings were recommended for adults at risk starting at age 50. Only last year did the U.S. Preventive Services Task Force, a widely respected organization, lower its recommendation to 45.
Carethers was pleased to see this change. Social determinants like poorer diets and less access to quality medical care, among other factors, have led to higher rates of colorectal cancer in the Black community.
He and other healthcare providers have advocated for decades for screenings for Black patients to start at 45. Now that this is recommended for everyone, messaging is easier. Still, barriers like removing copays for screening tests must continue to be implemented, Carethers says. “There has to be a multimodal approach to increase the screening rates among all populations,” he says.
The American Cancer Society says other choices for people of average risk include flexible sigmoidoscopy or a CT colonography (aka virtual colonoscopy) every five years; a multi-targeted stool DNA tests every three years; or the highly sensitive guaiac-based fecal occult blood test (gFOBT) or a FIT test annually. Studies have documented how colon screening saves lives. In a study published in Gut in 2018, undergoing a screening colonoscopy in the prior 10 years was associated with a 67 percent reduction in the risk of death from colorectal cancer, compared with those who hadn’t had the screening.
Paula is eager to let people know about options to having a colonoscopy every 10 years. “I want to share my story because not enough Black people are talking about this,” Paula says. This is even more true in the LGBTQ+ community, she notes. “A lot of times our community focuses on sexual health, but not on cancer,” she says. To remedy this, Paula has spoken about colorectal cancer awareness and screening options at several Houston-area clinics that treat this community.
Paula’s advocacy is making a difference, says Elizabeth Jordan, Fight Colorectal Cancer’s marketing manager. “By speaking directly to the Black and LGBTQ+ communities about her experience, Paula is breaking down barriers and the stigma around colorectal cancer and screening,” she says. “She is saving lives with the work she does and by sharing her story, and she is getting people to listen.”
“For me, it’s been such a blessing to be able to take my experience and do good things with it,” Paula says. She’s even gone back to the county health system that misdiagnosed her for so long, speaking to patients about the importance of colorectal cancer each March.
It’s her way of ensuring that other people won’t have the same long, disempowering, and dangerous delay she had trying to get her condition diagnosed.