Finding personal stories brings series on cancer disparities to life

I initially set out to do a series of radio stories that looked broadly at ethnic disparities in cancer outcomes. My idea was to pick three ethnic groups and one type of cancer that they were at a greater risk of developing than the population as a whole. I began researching Latinos and liver cancer, African-Americans and colon and prostate cancer, Asians and liver and stomach cancers, Ashkenazi Jewish women and breast cancer, and so on. What I began to realize is that each piece would begin to sound much like the others, with a description of the group’s elevated risk and a list of some possible explanations, all of them relatively vague.

Eventually I settled on one group to focus on, African-Americans, and one type of cancer, colorectal cancer (usually referred to simply as colon cancer). This is because Los Angeles has a large African-American population that is less likely to have health insurance than the general population, and because colon cancer is a largely preventable disease, if screened for properly. What I quickly came to learn by scanning the medical literature and reading news reports is that there are several factors for the elevated risk in colon cancer diagnosis and outcome. Perhaps the biggest factor has to do with the fear and stigma surrounding the colonoscopy, the main test used for examining the colon for lesions that could become cancerous. The test involves sticking a thin, flexible tube with a camera at the end into the rectum.

At first I wasn’t sure this was something I wanted to focus on. As with many people, I wasn’t that comfortable discussing that part of the body in public, especially on the radio. But when I interviewed Dr. Zuri Murrell, an African-American colorectal surgeon, he told me a message he tells many African-Americans: It’s not worth dying of fear and embarrassment. He often begins his public speeches by having the audience repeat the words “colon” and “rectum” after him. By bringing these words and concepts into the open, it helps dispel the stigma that prevents people from getting tested. Because this idea was so pervasive in the medical literature and in the conversations I had with colon cancer survivors, I decided to devote my first piece in the three-part series specifically to the fear of colonoscopies.

My second piece in the series looked at the research done by a team of Cedars-Sinai gastroenterologists about African-Americans and colon cancer. The investigators looked at other factors besides the fear of the test, such as biological factors, diet and exercise, distrust of doctors, insurance barriers, and the fact that doctors are less likely to recommend colon cancer screening to African-American patients. This was a challenging story to report because there are so many factors that contribute to the racial disparity in diagnosis and treatment, and I didn’t want to make the story seem more simple than it is. There’s no single solution to eliminating the disparity, and I wanted to make it clear that I wasn’t singling out one problem. I also didn’t want to get bogged down in numbers and percentages, which is what gives published medical studies their legitimacy, but which makes for boring radio. As with my previous story, what brought this story to life was the personal story of a survivor. In this case I spoke to a 67-year-old African-American who survived colon cancer thanks to a grueling regimen of chemotherapy, and yet his three brothers and wife (all above the age of 50) refuse to get screened for colon cancer, even though they’re at a much higher risk of developing it themselves.

Finding the personal stories was the hardest part of working on this series. Finding the medical research just took some digging online and calling the communications offices at all the major local medical research institutions. But finding the patients took more work. I asked the gastroenterologists I interviewed to help me, since they have direct contact with patients. One doctor invited me to an event where he spoke about colon cancer screening, and I was able to find survivors there to speak to. Another doctor arranged to have several of his patients meet me at his office to tell their stories.

I also reached out to a men’s cancer support group and attended their meeting in a church in South Los Angeles. All of the men were African-American and most survived either prostate or colon cancer. That helped provide characters and a scene for my third story, about the importance of outreach in reducing the disparity in colon cancer outcomes. While it’s important to put public policy solutions in place and look at insurance and other barriers to cancer screening, much of the solution lies in the power of friends and family urging each other to get screened. Even the doctors I interviewed, who devoted their careers to this issue, expressed frustration about their friends and family members who refuse to get screened.

One challenge I felt I had to overcome with this series was gaining the trust of patients and doctors. Not all the patients I spoke with wanted to share all the details of their personal medical history with me (and the listeners of our station). By explaining to them the public health benefits of spreading the message about colon cancer screenings, I was able to persuade them to open up to me. Of course, I didn’t push it if it was clear they were unwilling to give more than the most basic details. Some doctors also wondered why I was interested in this topic, since I am not African-American. By explaining that I was interested in the broader issue of racial and ethnic disparities in cancer diagnosis and outcomes, and showing that I had done the research and knew the statistics, they saw that my interest was genuine. This came up most when I was asking about the fear of colonoscopies. I made it clear that I saw this fear as transcending racial barriers, but because African Americans were at the highest risk and because it was an issue that came up often in focus groups of African Americans regarding colon cancer, I had to talk about it in that context.

I’m glad that I narrowed my focus to one group and one form of cancer. What I sacrificed in breadth I gained in depth. If I were to add a story to the series, it might be one that looks at overall biological differences that cause cancers to affect various groups differently. There is some fascinating research into how cancers affect members of different races and ethnicities differently that could be an entire series in itself. I touched on this a little bit in my second story, pointing out that African-Americans are more likely to develop polyps on the right side of their colon. There is also research showing that colon cancer affects African Americans at a higher rate, but is far more rare among black Africans living in Africa, which suggests that behavior (such as diet) plays a greater role than genetics in the disease.

Listen to Avishay's fellowship series here.

[Photo by A Healthier Michigan via Flickr.]