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This past summer, the Patient-Centered Outcomes Research Institute (PCORI) added Johnson as a member of its advisory panel on clinical trials. Johnson, as well as other members of the panel will use their experiences to help PCORI "refine and prioritize the research it funds," so that the outcomes matter not only to those who make decisions about health care but to the patients themselves, according to a news release. However, Johnson has put to work her passion for advocacy since 2014, when she became a research advocate trainee with Fight Colorectal Cancer (FightCRC) in as a research advocate trainee, In addition, Johnson has participated in genetic studies and has provided experience-based feedback to such organizations as the College of American Pathologists, Department of Defense, the National Coalition for Cancer Survivorship the American Association for Cancer Research’s Scientist>Survivor Program, the news release also said. And it’s all because Johnson's doctor, in 2011, suggested she take a fecal occult blood test, one of several screening tests for colon cancer.
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“At the time I was 45," Johnson said. "I was not old enough to get a colonoscopy." Until recently, the American Cancer Society's recommended colon cancer screening for people at average risk for colon cancer should begin at age 50. The age is now 45. Many doctors consider colonoscopy the gold standard for colon cancer screening. Johnson was surprised her doctor suggested the screening. She was faithful with her annual physicals, ate well, maintained a healthy weight and had no symptoms. But she trusted her doctor, so she agreed to the test and thought, “This is a no-brainer.” She was wrong. “The test came back positive, with just small traces of blood in it. I thought, ‘That’s strange. I don’t feel different. I don’t notice anything different.” Because the fecal occult test was positive, Johnson said her doctor sent to her a specialist for a colonoscopy. During the procedure, the specialist noticed one potion of the colon was blocked. Two weeks later, Johnson underwent what she thought was a minor surgery (“Five small cuts in my abdomen,” Johnson said) to locate the source of the blockage. “I woke up with an 8-inch scar, a portion of my colon removed and I had 3b colon cancer,” Johnson said. Johnson understood what the diagnosis could mean for her. “My first husband had been diagnosed with pancreatic cancer in 2007 and passed away I 2020,” she said. “He wasted away for a year. That was just the worse.”
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Johnson was referred to Dr. Nafisa Burhani (above) at Presence Cancer Care in Joliet, who recommended six months of chemotherapy. Johnson stopped after three months because her quality of life was so poor, she said. “I felt like I was dying and I was like, ‘I don’t like this feeling,’” Johnson said. “And I told my oncologist, ‘I just want you to be OK with my decision. If my life ends, I’m happy with where I’m at with that decision.” Miraculously, Johnson has remained free of colon cancer ever since that time. But Johnson wasn’t out of the cancer woods yet. In 2016, Johnson learned her grandfather had died of colon cancer at age 38. Johnson’s mother had died from a glioblastoma, an aggressive cancer that begins in the brain. Johnson shared that information with Burhani, who then suggested Johnson be screened for Lynch Syndrome, also known as hereditary nonpolyposis colorectal cancer (HNPCC), a genetic condition that can cause colon and other cancers, according to the Mayo Clinic website. In an email, Burhani said, although Lynch Syndrome is very rare (Burhani said she herself sees about one patient a year with it), Johnson’s family history made her suspect it in Johnson. “Patients with Lynch syndrome have an increased risk of colon, endometrial, pancreatic, gastric and urothelial cancer,” Burhani wrote. “However colon and endometrial cancer is most common. Other cancer incidence is dependent on family history.”
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Johnson's genetic test confirmed she had Lynch syndrome – and a high risk for endometrial cancer. “In 2016, I had a total hysterectomy,” Johnson said, “only to find out I was already at stage 1 endometrial cancer. It [the genetic test] was spot on.” It wasn’t Johnson’s last cancer battle. In 2017, Johnson developed a blemish on her back. Despite self-care treatments, it stubbornly persisted. So she consulted with a dermatologist, who removed it, just in case. “The day of the minor surgery, she wound up cutting out two inches of basal cell carcinoma,” Johnson said.
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Johnson said a brother now has stage 4 colon cancer. Johnson herself sees her oncologist every six months, her dermatologist every six months, and has a colonoscopy once a year. Regular colonoscopies can help catch colon cancer in its early stages, Burhani wrote. “If cancers are detected early it should not affect her survival,” Burhani wrote, “But unfortunately sometimes, even with careful surveillance, cancer can go undetected and that would affect the survival." Johnson suspects her colon cancer will return. But she’s determined it won’t get very far. “As a patient, I am very proactive. I make sure I go to all of my doctors,” she said. Burhani praised Johnson’s advocacy work by writing, “It is fantastic that patients become involved and create awareness. Having a patient tell their story is really powerful.” For more information on Johnson and the Advisory Panel on Clinical Trials, visit bit.ly/1De6jQE.