The Price of Being Invisible: How One Black Woman Fought for Her Lung Cancer Diagnosis
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Nichelle Stigger knew she had cancer. Her doctors didn’t believe her — for a full six months. She says the fact that she is a Black American, and a woman, has everything to do with it. Now a five-year lung cancer survivor, the 40-year-old mother, wife, and teacher is an activist who freely shares her experiences and hard-won wisdom to help others deal with the medical establishment. It’s a world, she says, that often feels foreign and unwelcoming “for people who look like me.”
The ‘Sense’ of Illness
A resident of Chicago’s diverse suburban community of Oak Park, Stigger was completing her master’s degree in education when, she says, she began feeling “tired, faint, a bit off.” Sophisticated and knowledgeable about her family’s medical care, she tried to brush the symptoms off. It didn’t work.
“There was a day when I couldn’t breathe and felt extremely fatigued and on the verge of passing out, with my heart racing,” she says. “So, I went to the emergency room and they did a battery of tests.”
The only abnormality found was a nodule in her lung.
The doctor insisted that the growth was “probably nothing,” Stigger says. That sounded good. But Stigger says she couldn’t shake the overwhelming sense that something was terribly wrong. “I asked the doctor for a scan to see what it was,” Stigger says.
The doctor wouldn’t listen, and didn’t want to do the scan. “We went back and forth for an hour, although she could have easily agreed to do one immediately,” Stigger says.
It was a familiar experience, she says, one she has had before as a person of color. “As a Black woman, nobody in medicine really hears you,” she says. “ You feel like you’re in a hollow room.”
Eventually, she managed to get a positron emission tomography (PET) scan. The doctor examined the results and concluded that the nodule didn’t look suspicious and called for “careful watching.”
Stigger was referred to a pulmonary specialist for the watching. She again expressed her concern that she had lung cancer. That doctor also dismissed her concerns.
It was deeply frustrating, says Stigger.
“When the doctors doubted me, I became so enraged that tears were just streaming down my face,” Stigger says. “I knew what disease I had, even though the doctors believed it couldn’t be lung cancer. And I wanted this resolved, having read enough to know that this kind of cancer can be aggressive; it’s one where time isn’t on your side.”
A follow-up screening was scheduled for six months later.
Hoping for the Best, Fearing the Worst
Stigger went home and tried to put the worry aside. She didn’t have much choice. But it wasn’t easy.
Stigger was no stranger to health problems. She’d already witnessed the devastating effects of illness when her father succumbed to complications from lifelong hemophilia. She was still struggling to manage the care of her son, Parker, then 4 years old, who also had hemophilia.
Try as she might to assume all was fine, there was the nagging feeling that something was terribly wrong.
Her husband, Aaron Stigger, was sympathetic and supportive, but faced with expert opinions to the contrary, didn’t share his wife’s concerns.
Meanwhile, her symptoms got worse.
“I was very fatigued, lost 20 pounds, and had a slight wheeze once in a while, which was particularly noticeable when I climbed several flights of stairs to my classroom,” she says. “I was feeling more lethargic and tired.”
By this time, too, she says, she had heard numerous stories about other Black women who had died of lung cancer. In her worse moments, she thought, ‘Holy cow, I have this cancer, and I’m going to die.’ And nobody believes I had something serious.”
In between, she tried to remain calm and trust the experts.
The Diagnosis
By the time she had her six-month follow-up screening, she had trained herself to remain calm and talk herself down from the dark thoughts. She was so relaxed, in fact, that she didn’t immediately take the call when her doctor phoned with her test results.
When she finally returned the call, the message was blunt: She had cancer and must immediately see an oncologist to discuss next steps.
When she went to see the doctor, she was again, blunt. “The doctor sat behind her big desk, far away from me, and said, ‘I saw cancer. It has grown. And you’ll need to have it removed.’ I said, ‘I told you this.’ She just danced around the topic and referred me to a surgeon.”
On the day of her appointment with the surgeon, Stigger was determined that she not be ignored again. She wanted the doctor to “see me and know he was working on a human being, a valuable human being,” she says.
“I told him that I’d just earned my master’s degree in education. Then, I showed him a picture of my son and talked about his medical issues and explained that I had to survive for him and for my husband,” says Stigger.
She made a connection. “He stopped and looked back at his bulletin board, where there were pictures of his daughter and his granddaughter — they were my age and my son’s age. He paused for a moment. Then he said, ‘Thank you for sharing.’ And something changed for all of us,” she says.
More Waiting
After the initial surgery to biopsy the tumor, Stigger waited the usual seven days for biopsy results. The malignancy was confirmed, but the growth, which was unusually gelatinous, required further testing. It took an additional week to determine the tissue type and stage.
The news, when it came, was guardedly optimistic: Her adenocarcinoma in situ (a non-small-cell form of lung cancer, or NSCLC) appeared to be localized and in an early stage. NSCLC accounts for up to 85 percent of all lung cancers, and is the most common form of the disease found in nonsmokers.
Her tumor was rare subtype called a mucinous adenocarcinoma, found in only 1 percent of patients, in which a good portion of the tumor was comprised of mucin, a key component in mucus. The scans she’d had in the ER, six months earlier, she learned, were incapable of picking it up.
The second surgery, to remove the cancer and affected lymph nodes, turned out to be more complicated than anticipated. Doctors removed more than 20 lymph nodes, as well as the lower lobe of her left lung.
“I was told that at first, they couldn’t even find all the lymph nodes and they needed about 40 minutes just to get to them,” Stigger says.
But there was good news. The cancer was still in the early stages, despite the late diagnosis. She was lucky. Aside from monitoring every three months, she was unlikely to need any additional treatment.
The Support
After the surgery, Stigger says that she sought connections with others who’d faced similar experiences. She found a kindred community at the nonprofit LUNGevity, where she received a scholarship to attend its 2018 National HOPE Summit in the Washington, DC, area. While she enjoyed the conference, she said that she noticed few other people of color among almost 400 people in attendance.
“There were only two Black people, yet I knew there were more women like me,” Stigger says.
Indeed, her research had revealed that lung cancer is the second most common form of the disease among Black Americans (PDF) and the leading cause of death in the population.
Stigger says she wanted to know not only why there were so few Black conference participants, but also what LUNGevity was going to do about it.
Her follow-up conversation galvanized Andrea Ferris, LUNGevity’s president and chief executive officer, to work harder to build a more inclusive organization — with Stigger’s help.
“She said, ‘You’re right, and I want to hear more,’” Stigger says. “We started having conversations about disparities in healthcare, talking to researchers about their data, seeking more information, and focusing on equity issues.”
Stigger has since joined LUNGevity’s board of directors, where she helps ensure that the organization maintains a strong emphasis on equity. Today, the organization includes many Black lung cancer patients and prominent Black clinicians and researchers among its conference attendees and speakers —among them, board member Robert Winn, MD, the director and Lipman chair in oncology of VCU Massey Cancer Center in Richmond, Virginia. It also sponsors scholarship for students of color.
“You could see that things had started to change,” Stigger says. “And I thought, ‘The work is happening.’”
The change represented a major victory for Stigger, her fellow lung cancer patients, and all those who hope to lift the cloak of invisibility that makes some patients — especially if they’re Black Americans — feel unacknowledged and unheard.
“I share my stories,” Stigger says, “so people understand that this is part of advocating — for kids and for parents and families.”
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