Terrified by Tumors
She looks so pulled together that you would never suspect what she’s hiding under her blouse. For some time, she’s been trying to ignore a tumor that’s now protruding through one of her breasts. The tumor is overshadowing her healthier breast and could fill a bra cup.
“We call them fungating masses because they have grown so large that they have ruptured through the skin,” explains Wayne Frederick, M.D., director of the Howard University Cancer Center and chief of general surgery at the College of Medicine. “It’s something that you would expect to see in a Third World country where you don’t have access to services like mammography.” Dr. Frederick is dismayed that in Washington, the nation’s capital, he has seen more than two dozen cases in four years.
“Fortunately we don’t see them as much as we used to,” said Camille Cash, M.D., a Houston plastic surgeon and board member of Sisters Network Inc., a breast cancer survivors group. Although fungated breast tumors in the United States have declined over the years, they occur periodically when fear and/or finances prevent women from seeking proper medical attention.
“They feel the mass,” Dr. Frederick says, “and rather than come and deal with it, they almost try to wish it away.”
Women have kept silent for as long as four years after feeling a lump, especially with a stagnant or slow-growing tumor but even after it explodes to the surface. Sometimes they feel no pain, because the tissue has died. In one case, a woman’s grandson contacted Dr. Frederick when the smell of dead tissue became unbearable. A cashier who had been covering her tumor with diapers finally sought treatment after complaints about the odor and pressure from her employer, Dr. Cash recalled.
Cancer advocates and physicians worry about women who go into denial instead of going to the doctor to improve their odds for longevity, quality of life and preservation of their breasts. For some women, it’s more complicated if they are uninsured or underinsured.
“Finances play a huge role in the care we receive and when we receive it,” said Zora Brown-Rowland, a senior advisor for Integris Health in Oklahoma City and founder of the Breast Cancer Resource Committee and Rise Sister, Rise. A fourth-generation breast cancer survivor who also developed ovarian cancer, Brown-Rowland was also uninsured at one point.
“The most common reason is no insurance,” Dr. Frederick said of women with fungated tumors. “They have bounced around from ER to ER. We have a policy at Howard to never turn anyone away.”
Even women with solid insurance, outgoing personalities and can-do spirits avoid treatment. “When they first come in they’re very secretive and introverted,” Dr. Frederick said. “Once we remove the mass, there’s a drastic change in their overall mood and outlook.”
Dr. Frederick immediately connects the patients with Howard University Hospital’s Patient Navigator, who was diagnosed with breast cancer when she was 23. Together, they coordinate a medical, financial, emotional and family support plan for each patient.
Treatment is fairly aggressive, typically with removal of the mass to reduce infection, reconstructive surgery with tissue from the abdomen or back, and chemotherapy and radiation therapy as needed. “They tend to do pretty well, because we return them to fairly functional status in a relatively quick period of time,” Dr. Frederick explained.
Dr. Cash notes that African-American women have an array of treatment and reconstruction options that can help them preserve not only their health, but also their “sense of femininity and sexuality.”
Both doctors encourage self-exams, mammography at 40 or earlier if there’s a family history of breast cancer and regular checkups. This is especially important, they warn, because black women often develop breast cancer at earlier ages and a type that is more aggressive and harder to treat.
Globally, black women have triple the rates of triple-negative breast cancer than white women, according to Lisa A. Newman, M.D., M.P.H., director of the Breast Care Center at the University of Michigan, who has been traveling back and forth to Ghana to research the differences among white American, black American and African women. Their tumor cells are “negative” for three targets of widely used hormone therapy and drugs: estrogen receptors, progesterone receptors and the HER2 protein. Most of the women with fungating masses had triple-negative breast cancer.
“You have better chances of survival when you get early treatment,” Dr. Cash said. She also encourages women to contact groups like Sisters Network for support from women who have had similar experiences and information about their options. It’s important to know what to ask since study after study shows that black women are less likely than white women to receive early, cutting-edge treatment.
“Cancer is still a very treatable disease—even when it’s advanced,” Dr. Frederick said. “It’s not a death sentence.”