Creating Purpose: Survivor Becomes Advocate for Colon Cancer After Taking On the Fight of Her Life
Cynthia Heath got the shock of her life when she learned she had colon cancer and a limited time to live. Now, she is an advocate for others who find themselves in the shoes she was in a decade ago.
BY Katie Kosko
PUBLISHED March 07, 2017
Cynthia Heath was told she had one year to live. That was in 2007. Now, nearly 10 years after she was diagnosed with stage 4 colon cancer that had metastasized to her liver, she is thriving as a survivor and advocate for others battling the disease.
The thought of cancer had never even crossed Heath’s mind. She went on vacation, but was sick the entire time. When she got off the cruise ship, she went to her primary care physician — the doctor she saw every year for wellness exams — and told her that she knew something was wrong. She was sent for a colonoscopy after she began to experience severe abdominal pain, but it couldn’t be performed because the mass was too large. A biopsy concluded that it was indeed cancer, and, at the time, deemed inoperable.
“I knew nothing about any of this. I just knew that I had this disease and that, from all medical standpoints, I shouldn’t be here,” said Heath in an interview with CURE. “Everything was in a fog and I still didn’t realize, until I was hooked up to get chemotherapy, that I had cancer.”
The battle for her life was filled with aggressive chemotherapy, radiation treatment and three major surgeries between 2007 and 2010.
A turning point for Heath was in 2009, when she attended a colon cancer conference. That’s when she connected with the Colon Cancer Alliance, the largest nonprofit organization dedicated to ending the suffering caused by colon cancer in the United States.
“When I went to that conference and saw people who were my age, who knew what I meant — it was powerful,” Heath said. “You could just look in their eyes and not say a word and know that they understood both you and your journey.”
Heath also met Michael Sapienza, the organization’s chief executive officer. That meeting became a blessing when he introduced her to John Marshall, M.D., director of the Ruesch Center for the Cure of Gastrointestinal Cancers, at Georgetown Lombardi Comprehensive Cancer Center.
In August 2014, her cancer came back. But, with a phone call to Marshall, she was squeezed in for an appointment the following week.
“Dr. Marshall asked me what my goal was,” she recalled. “I told him that I wanted to control the cancer and remain stable. He said, ‘Well, let me tell you what my goal is. It’s to cure you.’ Talk about getting ready to battle again. It gave me the inner strength to fight.”
It's a fight that she continues to this day, as she remains in a clinical trial at the National Institutes of Health where she is receiving CV301, an experimental immunotherapy drug.
While still undergoing treatment, Heath has gone back to work full-time and maintains her advocacy work with the Colon Cancer Alliance. She serves as a “buddy” for its program in which survivors mentor those who are newly diagnosed with the disease. She also speaks at various events held by the organization to share her story with others in an effort to stress the importance of early screening.
Those activities are only a snippet of what the Colon Cancer Alliance does for a million and a half patients, survivors and caregivers. It hosts monthly webinars, a yearly conference and chats varying in topics from bereavement to caregiver concerns. Also, the organization offers a helpline, clinical trial finder and financial support.
It has two online communities, Blue Hope Nation and Colontown, where individuals can connect and share information with people who understand what they are going through.
“Both of them are resources so people don’t feel alone,” said Sapienza. “But underneath that is the connectivity to our other resources like our navigators. We have six trained navigators that help monitor the helpline, the chats and the online communities to help patients navigate their journey.”
In addition to offering support, the Colon Cancer Alliance has a mission to raise funds for cutting-edge research, as well as improve screening and preventive measures.
“This is one of the most preventable cancers. One of our goals is to save 15,000 lives through screening by the year 2021. If we can play a part in that, then I think we will have done our job,” he said.
For Sapienza, this is a personal mission. He lost his mother, Christine, to stage 4 colon cancer on Mother’s Day 2009 after a nearly three-year battle. Up until that point, he had been traveling the world as a trained musician.
“I remember my brother asking me ‘Michael, you don’t seem very interested in your music right now. What’s going on? What would you do if you have a million dollars?’ Sapienza recalled. “And I said, ‘I would start a colon cancer foundation.’”
He added, “Sometimes I say my mom’s passing is the worst thing that has ever happened to me, but also probably the best thing.”
Heath shares a similar sentiment, as she has turned her cancer diagnosis into a purpose — all while remaining positive despite everything she has been through. She attributes that to her faith and trust in God, as well as adding humor to her life. Heath shared one funny moment that she remembers well. It happened while she was playing with her great-niece, and the then 2-year-old went straight for her wig.
“She just yanked that thing off of my head and put it on her little head and was running around,” she recalled. “Then, she just came and hugged me. She couldn’t care less that I was bald. It didn’t bother her one bit.”
Now, looking back on her first encounter with the oncologist who told her that she only had one year to live, Heath said, “To be given one year, and now I can say I’m going to be 10 years out, it’s just a miracle. It’s nothing short of miraculous.”