Sheila McGlown was diagnosed with metastatic breast cancer ten years ago at the age of forty-three, while serving in the military. “I was in the US Air Force for twenty-five years,” she recalled during a recent conversation; “and I was sitting at my desk when I sneezed and felt a burning sensation in my chest. I said: that’s weird.” Another week went by and it happened again; Sheila sneezed and felt the same odd burning pushing against her sternum. “Something didn’t feel right and I was nervous,” she added; “My mom died of breast cancer in 2004. She was diagnosed in 2001.”
As an enlisted member, Sheila went first to the military doctor and mentioned the family history of breast cancer. After a mammogram, the doctor came back to give her the diagnosis. “She told me to sit down and I was like ‘uh oh,’ Shelia remembered; “When the military does that you know it’s serious. Normally they just send you a letter with the results.” She went next to get an ultrasound, after which the radiologist pulled her aside to show her the scan. “He said: see all that white stuff? That’s cancer,” Shelia recounted; “Every time you sneeze, that’s the cancer pushing up against your ribs.”
No stranger to breast cancer, Sheila knew what to expect from that point on. “I’ve been dealing with it since my mom was diagnosed in 2001, so for the last nineteen years I feel like it’s always been a part of my life,” she stated. But it wasn’t always that way. Up until her mother’s diagnosis, she never thought cancer would be an issue for herself or anyone in the black community. “I didn’t even know black people could get breast cancer because the only person I ever knew who had it was my mom,” she recalled; “I had just bought a house in Illinois and my daughter was in college, I didn’t think it could happen to me; especially not at 43.”
After her diagnosis from the military, Shelia began undergoing aggressive treatment. “They didn’t send me to the VA,” she clarified; “I went to a civilian hospital in St. Louis and I’ve been going there ever since.” Over the last decade, she’s been on six different treatment plans. “My breast cancer is HER2 positive, ER/PR positive so I started with Taxol and Herceptin right away,” she added; “I did that for nine months, three weeks on and one week off.” For metastatic patients, the treatments are generally palliative and meant to extend the quality of life, as a cancer free existence is no longer possible. When one treatment ceases to be effective, patients often have to search out a new option with new procedures and new side effects. “Emotionally, it’s very draining because they say you live from scan to scan,” Sheila lamented; “It takes a toll on you both mentally and physically, especially when you don’t understand what metastatic means. I didn’t even know what the stages meant when I got diagnosed. I had never read up on any of this stuff. I didn’t even know an oncologist was a cancer doctor.”
Shelia quickly learned. She also learned just how important a role her health information played in controlling her care. “I had never really thought about my data,” she said; “I had always assumed it was in a repository because the military kept all my records.” Early on in her care, she would carry around paper printouts, but in the digital age she can manage everything with Ciitizen. “This way I can just email my doctor about any side effects and she knows what medications I’m on right away,” Shelia added; “For example, I’ve been having nausea with my current treatment and she was immediately able to prescribe me something to help. I can also send my records to the nurse about any questions I have.”
Like Ricki Fairley and Chawnte Randall, featured in previous patient stories, Sheila is a black woman with breast cancer who hopes that her experience can be an eye-opener for others in the community and outside of it. “You look at commercials for cancer and you don’t see black women,” she stated; “When they come out with new medicine it’s always older white women on the commercials, which always made me think: only older white women get breast cancer.” When it comes to bolstering greater awareness, Shelia believes trust is a major hurdle. “I talk to my oncologists and researchers all the time,” she added; “You need to understand our culture and the mistrust we have for the medical system as a whole. After you take the time to understand that, only then can you break through to talk about the importance of health data.”
Pharma can also take note of Sheila’s experience: “I’ve never known a black woman who has been on a clinical trial until I got on one.”
Join Sheila and sign up with Ciitizen to take control of your health data and help advance important breast cancer research.