Exact Sciences: What is your personal connection to colorectal cancer?

Candace Henley: I was diagnosed with colon cancer in 2003 at age 36. Six months prior to my diagnosis, I went to the emergency room because I had not had a bowel movement in over two weeks and nothing I used (citrate magnesia, enemas, suppositories) worked.

I was given something in the emergency room to help me go and after I did, they sent me home. The second incident was me passing out at work and it was discovered that my blood count was really low and that I needed a blood transfusion. This was attributed to me having fibroid tumors and possible cancer in my uterus, so a hysterectomy was performed.

It was three months later that I would wind up back in the emergency room for uncontrolled vomiting and not being able to keep down water. My primary care physician ordered a series of blood work and it showed I was in need of another blood transfusion. While in the ER, they performed a FOBT (fecal occult blood test) and it was determined I had blood in my stool which suggests colon cancer.

A colonoscopy revealed a tumor and off to surgery I went. Because I did not meet current national guidelines for colon cancer screening — recommend starting at age 50 for the general population — I was misdiagnosed for six months. 

What are you doing to raise awareness of this disease?

I am what I consider to be a “serial ambassador for colon cancer awareness”. I am an ambassador for the Colon Cancer Alliance, I was a model for the Colondar, which is a calendar of colon cancer survivors all diagnosed before the age of 50, and I travel to Capitol Hill on various causes of colon cancer awareness with Colontown/Chris4Life on behalf of Right Scan Right Time.

Tell us a little bit more about posing as a Colondar model? What did the experience mean to you?

When I first got to Lake George (where the photo shoot took place), I had never seen anything more beautiful in my life. When I met the other models, I felt like I met my long lost sisters and brothers. Everyone working to make the Colondar shoot happen were all amazing because they too had been touched by colon cancer and were giving of themselves to make us all feel comfortable and welcome.

Before the shoot, I had hidden my scar from the world and myself because it reminded me of tragedy I had experienced through cancer. Mark, the photographer has a wonderful way to make you feel beautiful despite your scar and instead of tragedy; it became a symbol of my triumphant survivorship. It meant that I could see the beauty in myself and in my scar, it meant that I was a survivor and not alone. 

In your opinion, why is it important for people to be educated about the disease and the prevention methods?

It is important because colon cancer is a preventable, beatable and treatable cancer with early detection. Surprisingly, a lot of people have never heard of colon cancer. I certainly had not and if people are unaware how can they get screened?

Each year an estimated 150,000 people in the U.S. will be diagnosed with colon cancer and an estimated of 49,000 will die from the disease and that is why awareness is important.

As you know, African Americans have the highest levels of colon cancer incidence and mortality in the United States? Are there things that you are doing to reach out to African Americans in particular? What should groups or advocates do to try and remedy this disparity?

I created an awareness event at my church entitled “Blue Hat/Blue Sunday” to raise awareness in the African American community and the importance of getting screened.  Places of worship are an important location for health education and screenings because many people in underserved communities don’t have access to care or quality care that attend an organized religious service and you must meet the community where they are, the community. The churches are valuable community structures.

What are your thoughts on what Exact Sciences is trying to accomplish?

It is invaluable! It is necessary and it is wonderful! 

Lastly, what is one thing that you would like people to take away from your story?

I want people to take away that colon cancer is not a death sentence; I want people to know the importance of early detection and knowing your family history. The African American community as a whole does not like to talk about their personal business especially illnesses or diseases and we should talk about it, what we don’t tell might kill our children or grandchildren and so on.