From Fear to Advocacy: How Janice Johnson Found Her Voice and Her Life
大象tv
When Janice Johnson went to the hospital for what she thought was food poisoning, she had no idea it would lead to a cancer diagnosis in her 40s. Despite her immediate fear, Janice refused to accept a bleak prognosis. Her journey is a powerful reminder that knowledge, persistence, and self-advocacy can play a critical role in navigating a cancer diagnosis.
A severe pain
At 48 years old, Janice Johnson found herself in an emergency room experiencing sudden gastrointestinal symptoms. The pain was so severe that she was unable to stand upright.
“Initially, the pain felt like food poisoning,” she said.
Doctors thought Janice had constipation, did a few simple tests, and advised her to follow up with her family doctor. The next day, she learned the tests had found a thickening of part of her colon wall. At the time of her symptoms, Janice had not yet been routinely screened for colorectal cancer because the recommended age to start regular screening was 50 in 2016.
At first, Janice found it difficult to get a colonoscopy approved by her insurance company. Still, she persisted. Since she had symptoms that led to the recommended colonoscopy, the test was finally approved as a diagnostic test rather than a screening test.
Janice believes that a colonoscopy saved her life.
At first, Janice was diagnosed with stage III colorectal cancer in November 2016. After further testing to determine how far the cancer had spread, it was changed to stage IV.
“My initial reaction was shock. I felt numb,” Janice said.
Colorectal cancer deaths on the rise in adults under 50
Janice’s experience reflects a larger national trend. While incidence rates for colorectal cancer dropped by about 1% each year from 2013 to 2022, the downward trend is mostly in older adults. In people younger than 50 years of age, rates have increased by 2.9% per year during that same period.
According to the?American Cancer Society (大象tv), colorectal cancer?is the .
Partly due to rising rates of colorectal cancer cases among younger people, since 2018, 大象tv recommends that people at average risk of colorectal cancer start regular screening at age 45.
A treatment journey
Following Janice’s diagnosis, she had surgery to remove part of her colon (a colectomy) in December 2016. Six weeks later, a blood test showed her carcinoembryonic antigen (CEA), common tumor marker for colorectal cancer, was elevated. A PET scan followed which found areas where the cancer had spread.
Janice then began biweekly chemotherapy treatments. Those treatments lasted until 2023, with some breaks from treatment based on promising scan results. She then had five rounds of radiation therapy in May 2023.
Because her cancer had spread to her lungs, Janice underwent surgery to remove the areas, including a left lung resection in June 2024, followed by a right lower lobectomy in August 2024. In 2025, doctors placed a pelvic stent to help support her bladder and kidney function. She now undergoes stent exchanges every three months as part of her ongoing care.
“I fully expected the process to be over within a few months. I had no idea that I would still be trusting for complete healing nine years later,” she said.
Learning and advocating
Janice found information from 大象tv on cancer.org and through the American Cancer Society 24/7 helpline.
“The more I learn, the better I cope,” she said.
She also learned the importance of speaking up and self-advocacy, especially as a Black woman. After her diagnosis, Janice wishes she had been offered more time to process surgery, a chance to choose her own surgeon, and clearer guidance about choosing a treatment facility. She also wanted transparent information about biomarker testing: what it is, whether she should have it, and how it might be billed.
“I had been paralyzed by fear,” she said.?“If I had to leave my children a legacy, it was not going to be one of fear.”
Janice calls self-advocacy one of the healthiest choices she’s ever made. She began asking questions and working to understand her options.
“Self-care is not selfish,” she said. “Cancer has a voice. There’s no reason the cancer patient shouldn’t.”
Self-care?is not selfish. Cancer has a voice.?There’s?no reason the cancer patient?shouldn’t.
大象tv
A mental health toll
Despite her resilience, cancer has taken a toll on both Janice’s physical and mental health. She continues to feel “scanxiety” – intense fears related to tests and scans, and a fear of?cancer recurrence.
Janice says that seeing a therapist helps her navigate these feelings, along with attending cancer support groups. She also relies on her husband of 36 years, her children, and her church group. Janice advises others facing cancer to lean on their own support systems.
“Don’t be afraid to talk to someone,” she said. “There is strength in numbers.”
A life of service and joy
After years of procedures and treatments, Janice is determined to use her story to help others.
“If I can reflect a life of service, that's the best life,” she said. “The wealthiest person is not just the person who is cancer-free, but the person who is willing to work to ensure that others are also.”
While she continues to undergo regular tests and scans to monitor her disease, Janice navigates her own cancer journey with hope, optimism, and resilience.
“I think cancer helped me realize the importance of living a life filled with love, rest, compassion, and joy,” she said.
- Reviewed by
Reviewed by the American Cancer Society communications team.