Candace Henley, “Chief Survival Officer,” founded The Blue Hat Foundation
Candace Henley, a near West Side native, wants you to know that colorectal cancer screenings, patient navigation and emotional and financial assistance are available for people facing or at risk of America’s third-leading cause of cancer-related deaths.
Henley, who suffers from unrelenting chronic pain after her colorectal cancer diagnosis and emergency surgery 20 years ago, founded The Blue Hat Foundation [www.thebluehatfoundation.org] to ensure that others would avoid the same fate. Email info@bluehatbowtie.org for more information.
She calls herself the “chief survival officer” of the not-for-profit foundation, which is a trusted partner of clinics, hospitals, top-notch researchers and research institutions, like the Big Ten Cancer Research Consortium.
Her story shows why. Doctors misdiagnosed Henley for six months. After her second visit to the emergency room, doctors referred her to an obstetrician/gynecologist because she was anemic. Having had a history of heavy menstrual periods, fibroids, endometriosis and ovarian cysts, Henley had surgery to remove her right ovary in February 2003 and a total hysterectomy in March 2003.
On her third ER visit, Henley was anemic again. She was admitted to the hospital in June 2003 after a test found blood in her stool. Doctors performed a colonoscopy and found a grapefruit-sized tumor on the right side of Henley’s colon. The doctors then removed Henley’s large intestine and reconnected to her small intestine near her rectum. The surgery left Henley unable to control her bowels.
“At the time [of the surgery], the doctor said I should be able to go back to life as normal,” said Henley, a former bodybuilder and the sole provider for her five daughters. “That was not the case.”
Henley lost her job as a CTA bus driver, and then she lost her car and her home in the Avalon Park neighborhood. She had to move from place to place with her five daughters for three years. She managed to avoid staying in homeless shelters until she finally got hired at FedEx.
Henley endured many red flags that she tells others to pay attention to, like gas, stomach pain, diarrhea and unexplained constipation that lasted for weeks. The doctors weren’t looking for colorectal cancer because Henley, now 55, was 35 years old when she was diagnosed — a full 10 years younger than the age at which the American Cancer Society recommends people get their first colon test.
Amid her travails, Henley found an online support group of early-onset colorectal cancer survivors, and realized that no one was advocating for Black and underserved patients — the very people most affected by colorectal cancer. In Chicago alone, a 2020 study showed that the rate of colorectal cancer among Blacks (25.9) was 69% higher than that of whites (15.3).
Henley advises anyone with a family history of polyps or colorectal cancer or who thinks they may be at risk to get genetic testing and to insist on early screening.
Henley and the Blue Hat Foundation “do whatever we can to support the patient,” she says, including covering co-pays, providing patient transportation, making referrals for screening or colonoscopies, participating on advisory boards and in clinical trials and educating the community about every facet of the cancer journey.
“We will always look and see if we can find someone to help or if anything is available through our partners,” she says.