Many of us were shocked when we read that award-winning actor Chadwick Boseman died on Aug. 28, 2020 of colorectal cancer (colon cancer). Boseman, who played iconic characters such as James Brown and Jackie Robinson, appeared to be in good health, and he was only 43. "The biggest misconception is that you cannot get colorectal cancer if you are healthy," says Adjoa Anyane-Yeboa, MD, MPH, a gastroenterologist at Massachusetts General Hospital. "Anybody can get colorectal cancer. If you are at average risk—meaning you don't have a family history of colon cancer or a diagnosis of inflammatory bowel disease— you should start screenings at age 45," she says.
Previously, the age to be screened was 50, but due to the increased rates of colorectal cancer in younger people, that age was lowered. Furthermore, colon cancer disproportionately affects the African American community. Black Americans are about 20% more likely to be diagnosed and 40% more likely to die from the disease than most other groups.
"While there are multiple factors [to be considered], it's been determined that African-Americans may have a higher genetic predisposition to developing colon cancer at a younger age," says Timothy Quinn, MD, medical director of Quinn Healthcare. "They're different ways to be screened, such as a traditional colonoscopy or Cologuard," he says.
While Cologuard is not a replacement for getting a colonoscopy in high-risk patients, it is a noninvasive at-home test used to detect abnormal DNA and blood in your stool sample. “If you ever develop symptoms of colorectal cancer (blood in the stool, abdominal pain, new constipation), you should talk to your doctor about getting checked sooner,” says Dr. Anyane-Yeboa.
There’s a chance, however, that you may not experience any symptoms at all. "One of the biggest reasons we're so disproportionately affected by colon cancer and other forms of cancer is that we don't go get our screenings at the frequency we should," says Dr. Quinn. Scheduling an appointment to see a healthcare professional yearly allows them to see what is going on with your health as well as to catch things early. "If you are diagnosed with colon cancer, early intervention or treatment can save your life," he says.
One such person who survived through treatment is Candace Henley, who was diagnosed with colon cancer in 2003. This is her story in her words.
Can You Fix Me?
I was diagnosed at 35 with colon cancer, and it took them six months to find it because I didn't meet the age criteria for screening at the time [which was 50 years old]. Before my diagnosis, I was experiencing shortness of breath, and there were about two weeks when I didn't have a bowel movement. I was also in a lot of pain but thought it was nothing. I tried the over-the-counter remedies but still couldn’t have a bowel movement.
I went to the emergency room, and they gave me something to take. I used the bathroom within two hours, so they sent me home. No one asked any questions or followed up with me. Two weeks later, although I was feeling lousy, I went to work. I was a bus driver for the transit system in Chicago; after checking in, I fell on the stairs of my bus. I was taken to the hospital, and they found that my blood count was low. I had a history of endometriosis and fibroid tumors (which can cause heavy bleeding during monthly periods and may lead to low blood counts), so they attributed my low count to those issues and told me to make an appointment with my OB-GYN.
After I saw my OB-GYN, the decision was made to remove my ovaries. Then, I was called back two weeks later and told that they wanted to perform a complete hysterectomy.
I had a hysterectomy two weeks after my 35th birthday. I couldn't stop vomiting, so my doctor sent me to the emergency room and told me to call him when I got there. He asked them to draw blood. The nurse came in and looked distressed. My blood count was severely low, but, at the time, I didn't understand what that meant. I didn't realize I was near organ failure.
My doctor ordered a fecal occult blood test which screens for colon cancer (FOBT kit), and blood was found in my stool. After that, I had a colonoscopy, which uncovered a grapefruit-size tumor on the right side of my colon. I couldn't believe everything that was happening to me, and the whole time, I just thought about the five daughters I had to raise.
When they asked me if I wanted to speak with a psychologist, I didn't know what to say other than ‘Can you fix me?' I needed surgery, and I asked if I was going to need a colostomy bag (which collects fecal matter from the digestive tract through an opening in the abdominal wall). It was decided that I didn't. I was in shock. I had surgery the day after my diagnosis and one round of radiation therapy once a week for three months after that.
The surgeon expected me to adjust back to my regular life, but that wasn't the case. They had removed my entire large intestine, and I had a resection to my rectum. And that was very problematic because I could no longer do my job as the bus driver. Also, I couldn't eat the same way I had in the past because my stomach couldn't handle it, so I was also malnourished. I couldn't work and didn't know how I was going to make ends meet because, at that time, disability wasn’t enough and there was no mortgage assistance. Plus, colon cancer wasn't a qualified condition on Social Security's list, so I couldn’t get social security disability either.
Every place I turned, there was no help. I depleted my 401k trying to save my house and had to file for bankruptcy. My doctor told me that my life expectancy was only three to five years. I had nowhere to turn, and no one was listening. I was so stressed, and I just felt like no one saw me. It felt like I wasn’t a viable person. It was at that point that I attempted to take my life.
Making The Most Of The Time Left
The paramedics were called, and I was taken to the hospital, where the medical staff pumped my stomach. I was placed in a psych ward for five days. One of the nurses assigned to my care asked me why I tried to take my life. I told her I felt like I had no other option. I didn’t want my kids to suffer and watch me go through that gut-wrenching journey. She said she understood, but she also told me that if I had succeeded, other people would have to tell my children about me. She said they needed to have their own stories about me. What she said made sense amongst all the other noise in my head.
I was distraught, I was angry, but I was also praying to God and bargaining. I was asking just to see my youngest, who was four years old at the time, turn 18, and if I could do that, I wouldn’t ask for anything else. I was also going to raise awareness, and I would make up for what I had tried to do to myself.
I lost my house and my car. We were homeless and living from place to place. I wanted to find employment, but it was a challenge because I would then have to share my cancer diagnosis. I ultimately got another job with FedEx, which helped us land on our feet. Things were still challenging, but I found ways to make my daughters smile because they were my nurses. They were worried about me. Even when the lights or gas were cut off, I made the best out of it for them. I know it was traumatic for them, but I did the best I could. I needed to make the most out of the time I thought we had, but when they went to bed, I would just cry.
The Future Is Blue
Eleven years after my diagnosis, my aunt told me there was a history of colon cancer in our family. Although my father and two of his sisters didn't die from the disease, they were diagnosed with colon cancer post autopsy. My father was 42.
My family history of the disease meant that I was high-risk plus. I was told after my diagnosis that I had Lynch syndrome (a genetic disorder that increases the risk of developing certain cancers like colon, rectal, stomach, skin, and prostate cancer). Today, I’m cancer-free and have been for the last seven years.
I have manageable complications from radiation, such as fibromyalgia and COPD (chronic obstructive pulmonary disease). I live a pretty healthy life and still have to watch what I eat because I have issues with certain foods. I get scanned yearly as well as a colonoscopy every year. My doctors also monitors me closely because I have Lynch syndrome, which makes me susceptable to developing another form of cancer. My children are also monitored.
In 2010, I started a “Blue Hat Bow Tie” Sunday at my church to raise awareness about colon cancer in my community. It started off small, but eventually we offered free screenings for blood pressure, diabetes, cholesterol, and colon cancer. In 2015, I launched the Blue Hat Foundation to continue to spread the message about the importance of screenings with outreach in minority and underserved communities. One of our taglines is 'family secrets kill families,' and that's based upon my own experience with my aunt not sharing what she knew about my family's history.
We want to encourage conversations within families because what you don't know today could kill you tomorrow. I'm a living testament to that. Colon cancer almost killed me, and in some ways, it did kill the old me, but the new me is here and sharing this journey and trying to save as many lives as possible by sharing my story. Your journey doesn't have to be like mine.
I'm not saying that you're going to survive as I did. But what I am saying is that it is preventable, beatable, and treatable. Early detection is that key, but also with early detection, knowing your family history is important.
Editor's note: This story has been condensed and edited for clarity.