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April 19, 2023
7 min read
Source/Disclosures
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Disclosures:
Antoine-Gustave and Casey report no relevant financial disclosures.
When James Casey, acclaimed saxophonist for the Trey Anastasio Band, first began feeling the dull ache on the right side of his abdomen, it was easy enough to ignore — and colorectal cancer was the last thing he would have considered.
“I didn’t know that something was wrong,” Casey said during this year’s Colorectal Cancer in Young Black Americans event, presented by the Association of Black Gastroenterologists and Hepatologists. “My stool was a little more red than normal, but I thought it was something else, so I just let it go.”
Source: James Casey
Hiding in Plain Sight
At age 38, Casey had built an impressive resume playing alongside such acts as The Roots, John Legend, Anderson .Paak, the Jonas Brothers and Meghan Trainor. Having spent most of the pandemic in Hawaii, Casey returned to touring in fall 2021, with his first gig at Colorado’s famed Red Rocks Amphitheatre performing with former Grateful Dead drummer Bill Kreutzmann’s Billy & The Kids.
Following the performance, however, the abdominal discomfort he had been avoiding for months started to intensify.
“I felt like I had a lot of gas, just a lot of bloating — I knew something was wrong,” Casey said. “At the time, I thought maybe it was the altitude since I had spent so much time at sea level. But I got back to New York after that gig and the pain didn’t go away. I thought maybe I had appendicitis. Whatever it was, it felt like it was growing.”
In increasingly severe pain, Casey went to a local emergency department, where he was admitted, had a CT scan performed and was told that he had colitis. He was promptly sent home that day with antibiotics. However, later that night, a doctor from the ER called Casey to follow up.
“I explained to her that I was in a lot of pain, and it didn’t seem like the antibiotics were doing anything,” Casey recounted. “The doctor told me that she had seen the CT and that I needed to go back to the hospital; she asked me to please go get a colonoscopy.”
When he returned to the ED, however, a different physician insisted that the other doctor had simply “overread the chart” and seemed skeptical of the pain Casey was reporting.
“He implied that I was just there trying to get pain pills,” Casey said. “They sent me home with ibuprofen and Tylenol.”
Within 3 days, Casey was back in the same ED with the right side of his stomach visibly distended by several inches, at which point, he was rushed into emergency surgery where they discovered a stage 3 tumor in his colon.
“The tumor — the one I didn’t know that I had — had pierced through one side of my colon to the other and blocked my colon completely,” Casey said. “That was 5 days after I went to the ER the first time. From then on, everything changed.”
Community in Crisis
Although CRC diagnoses in the U.S. gradually have been declining, due in part to earlier screening measures, Black patients remain 20% more likely to develop CRC, 40% more likely to die from CRC and significantly more likely to be diagnosed at a later stage of disease, according to recent data from the American Cancer Society.
In addition to disparities in health care access and age at diagnosis, racial differences in incidence and survival may also be attributed to high-risk behaviors, such as poor diet and lifestyle factors.
“There are several modifiable risk factors that many of us [in the Black community] grew up with on a day-to-day basis that can be easily changed,” Valerie Antoine-Gustave, MD, MPH, a clinical instructor in the department of medicine at NYU Grossman School of Medicine, told attendees during the Association of Black Gastroenterologists and Hepatologists event. “In our communities, we are aware that obesity puts you at risk for many different cancers but particularly for colon cancer, especially in men. Diets high in red and processed meat, and low in fruits and vegetables have also been linked to increased risk for colon cancer.”
Likewise, Antoine-Gustave noted that type 2 diabetes, a common comorbidity in the Black patient population, has been linked to heightened risk for CRC.
“Smoking cigarettes has also been linked to increased risk for colon cancer and, although alcohol has been considered to be relatively benign, heavy alcohol consumption has been associated with increased risk for colon cancer as well,” she said.
Historically considered a cancer only affecting older patients — in particular, older white men — there has been a notable uptick in CRC incidence among younger adults.
“It is still relatively rare to see colorectal cancer in young people; however, there is a disturbing new trend of a rise in colorectal cancer among individuals under 50 years old,” Antoine-Gustave said. “Right now, approximately 11% of the new cases of colon cancer are in younger people, and it has been rising about 1% to 2% each year since the early 1990s. By 2030, colorectal cancer is expected to be the No. 1 cancer killer in America for those under the age of 50.”
She added: “This is why, in May 2021, the guidelines were changed to start colorectal cancer screening for everyone at age 45. Initially, the medical community had recommended for Black people to start at 45 and everyone else at 50, but now the recommendation is for everyone to receive their first screening colonoscopy at 45.”
However, these updated screening recommendations are only effective if patients have a dedicated health care provider to recommend screening to them, which can be especially problematic for young Black patients who do not have health insurance and lack routine preventive care.
“I didn’t have insurance until Obamacare,” Casey said. “Any time I went to the doctor, it was for a problem or an emergency that needed to be taken care of. I had no primary care physician or anything like that. When I finally did start being able to go to the doctor regularly, no one said anything [about my risk for colorectal cancer].”
Seen But Not Heard
Following emergency surgery to remove the tumor, which had already reached his lymph nodes, Casey started chemotherapy to prevent further spread. Unfortunately, the cancer has since progressed to stage 4 and, although his disease is currently stable, the fact that his symptoms were originally dismissed does not bode well for other Black patients seeking care.
“My partner was there with me the whole time,” Casey said. “She was literally with me at the ER all three times. She was my advocate, yelling as loud as possible at these people; unfortunately, the first two times, it fell on deaf ears.”
According to Antoine-Gustave, “this is not an uncommon story, especially for people of color. Your story highlights some of the challenges we face when presenting our symptoms, when we are saying what is happening with us.”
She noted that having an advocate as a third party can help mediate between the patient and physician, especially in the ED where there are multiple physicians. If a patient feels they are not being heard or their symptoms are not being addressed, Antoine-Gustave recommended that patients should ask for another opinion.
“You should state that you are feeling that you are not being heard and reiterate some of your symptoms,” she said. “I would say, ‘I think there has been a misunderstanding.’ It’s a matter of reiterating, insisting and asking for another person or a higher-up to listen to your story. Sometimes it has to get to that. In [James Casey’s] case, you did make an effort to go back and communicate, so your experience feels like a failure of our health care system in terms of hearing you, especially in light of your abnormal imaging.”
Easy-to-Miss Signs
Although CRC guidelines do not recommend initiating screening before age 45 unless there is a high cancer risk, such as a family history or certain types of polyps, it remains essential for the Black community to be aware of possible symptoms.
One of the more common symptoms, as in Casey’s case, is abdominal pain and cramping that persists and worsens over time. Once patients notice a pattern, Antoine-Gustave recommended they talk to their primary care provider.
“Sometimes people are embarrassed to talk about their symptoms, especially when it comes to GI, but we are used to it and we do not care,” she said. “We just want you to paint a picture of what has been happening to you so that we can figure out what to do.”
Other notable symptoms include a change in bowel habits, including persistent diarrhea, constipation or even a noticeable change in size from the established norm. Antoine-Gustave noted that some patients will have less obvious symptoms, such as fatigue, onset of anemia or even the feeling that “they need to have a bowel movement but are not able to fully relieve themselves.”
“The biggest one, though, is the rectal bleeding,” she said. “Blood is never normal. If it’s bright red, if it’s dark, if it’s maroon-colored, you have to say something. Don’t assume it’s hemorrhoids, which is something that we hear a lot. You could have hemorrhoids, or you could have something else, but you have to tell your doctor.”
‘The Patient Not Just the Outcome’
Two years after his diagnosis and emergency surgery, Casey is still undergoing treatment but has been able to return to touring. He also has become an outspoken advocate for colorectal cancer awareness in the Black community, while fundraising for groups like Eastern Virginia Medical School’s HOPES Clinic, the Nancy Langhorne Foundation and the Colorectal Cancer Alliance.
His cancer experience has given him a new outlook and even emboldened him to release music on his own, including the holiday album, “A Little Something For Everyone,” in 2022 and his full-length solo debut, “The Kaua’i Project,” which launched in March.
“In the last year, I have had my ups and downs with this whole thing to the point where I had to give myself a mantra: One day at a time,” Casey said. “If I’ve got today, then I can deal with whatever happens next. If I’ve got today, I can deal with whatever happens today tomorrow.”
Despite his initial misdiagnosis and dismissal in the ED, Casey maintains that at least one physician was instrumental in saving his life, and even offered some advice for other providers on patient care.
“Just the fact that that one doctor cared enough to reach out a little bit more, that was enough,” Casey said. “The fact that the ER doctor called me at home, that she took time out of her day, out of her shift, to call me to make sure I knew what was happening and explain things in the way that I would understand. She couldn’t tell me that I had a tumor and couldn’t tell me that it was an emergency, but she did go out of her way to help.”
He added: “That particular doctor, she absolutely saved my life. Be like her. Care, truly care about the patient, not just the outcome.”
Race and Medicine
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