Hartford Currant – July 31, 2001
A Sister’s Journey Breast-cancer Survivor Spreads The Word To African American Women
July 31, 2001|By JULIE HA; Special to The Courant
Cancer wouldn’t leave Linda White-Epps alone. Twelve years ago, doctors found cancer on her longtime companion’s rib cage and lungs. Despite radiation treatment and chemotherapy, he grew very ill. One day he turned to Epps and said, Linda, you’re the only one who doesn’t believe I’m going to die. He did die. He wasn’t yet 40.
Two years later, while taking a shower, Epps discovered a lump that felt like a water chestnut on her right breast. The same doctors who had cared for her companion told her she had breast cancer. At her daughter’s baby shower, Epps announced her diagnosis to the four generations of women in her family. And I was the only one who was supposed to have it, Epps, a Hamden resident, recalled thinking. I’m doing it for them. I’m the sacrifice.
But years later, Epps would discover that her mother’s aunt and her own aunt had breast cancer. Her great aunt, at 93, is still living. But the aunt — her favorite, the one she most resembled, the one who slept at the foot of her hospital bed when Epps got her mastectomy — died after the cancer spread to her bones. She was 72.
“I feel like I missed something, Epps says five years later, eyes damp. I don’t know what I missed. I don’t know what happened to her.”
Because her aunt was a private person, Epps didn’t know at what stage her aunt’s cancer was diagnosed or whether she had gotten regular mammograms. Epps couldn’t imagine that, after all the doctor’s appointments to which her aunt had accompanied her, she would not get herself checked. But she just doesn’t know.
The loss haunts her. Now, at 54, Epps won’t leave cancer alone. She has been leading a small but growing coming-out movement for African American breast-cancer survivors. There has been a silence in her community about this disease, which takes an especially heavy toll on African Americans. And that silence has bred myths: that breast cancer is a white woman’s disease, that cancer diagnosis is a death sentence.
That silence has made some women feel they are suffering alone.
Calendar Was First Step
So about three years ago, Epps began Sisters’ Journeys. Its original purpose was to create a calendar featuring the faces and stories of African American breast-cancer survivors in Connecticut — first in 2000, again this year — with proceeds benefiting the American Cancer Society. The calendars made Epps a minor celebrity among African American women with breast cancer, who would contact her for advice.
Sisters’ Journeys has evolved into a breast-cancer support group for African American women, who traditionally have not taken part in such groups. The group has been meeting on and off in Meriden since last fall. In June, Epps launched a second group in New Haven.
A full-time dispatcher for Southern Connecticut Gas Co., Epps does all of her cancer work in her spare time. The mother of two and grandmother of two is also a board member of the Connecticut Chapter of the American Cancer Society and the Connecticut NAACP. On Aug. 23, she will be recognized on a special website and issued a congratulatory letter from President George W. Bush and former President George Bush with the Daily Points of Light Award, given each weekday to someone making a positive difference in the lives of others
I think she’s driven by my sister’s death to make sure there aren’t other women [dying], said Epps’ mother, Phyllis White. After my sister died, she said, `There’s got to be a way to get the word out to African American women. They don’t get mammograms. They don’t talk about it.
But at Sisters’ Journeys meetings, African American women are talking about it.
Helping Sisters Cope
Inside a New Haven home on a sunny June evening, these survivors of different shades of ebony, with hair color covering blond to gray, are talking about hot flashes and Suzanne Somers, the latest celebrity to battle breast cancer. Against a backdrop of Charles Bibbs’ African-themed paintings on the walls, they’re also joking about how weight gain is a side effect of breast cancer. One woman tears up as she reveals her deepest fear.
I don’t want them to tell me down the line that I’ve got full-blown right here, says Carolyn Sasser, pointing to her left breast. It plays on my mind.
Sasser, 54, of New Haven, tells the group of 10 that she found out she had breast cancer from a message left on her answering machine by her radiologist’s office. “No, you don’t do that,” one of the other women responds disapprovingly. “Ever since then, I’ve been scared,says Sasser, her voice crackling with panic.
It’s going to be all right, Epps reassures her. Look at Yvonne; look at Yvonne.”
Yvonne Watson says she was just moving into her fifth year of survivorship. It’s supposed to be OK after your fifth year, says Watson, a 52-year-old high school health teacher.
But when Watson went in for her six-month checkup last August, a CAT scan revealed cancer in her chest. She had to have part of her sternum removed and get radiation and chemotherapy, for the second time.
Watson, her short curls resting close to her scalp, shares a prayer she says every morning with Sasser: I say, Blessed be this day that God has made. Let me rejoice and be glad in it. And I tell myself, Sit back and enjoy your day. Leave the house with a positive mind.
Comfort In Shared Culture
A landmark series of studies led by Dr. David Spiegel, a leader in psychosomatic research, revealed that support groups are an important social network for breast-cancer patients and may contribute to longer survival.
But Epps learned that many African Americans were not turning to support groups.
It’s not that they’ve been denied going to any of them, said Epps. They’re out there. But sometimes women feel more comfortable when they can identify with the appearance of another person. … I hear people say this all the time: [Breast cancer] is a white woman’s disease.
Eileen Williams-Esdaile of Hamden, married with two children, joined Sisters’ Journeys because she wanted to be part of a support group geared for women like herself — women with a shared understanding of what a proper wig or “flesh-toned” prosthetic would look like. These women, Williams-Esdaile said, don’t have to explain to each other that African American women tend not to go the doctor and tend not to speak about family histories of cancer. They also don’t have to feel shy about talking about God.
While Epps said Sisters’ Journeys has no religious affiliation, nearly every survivor featured in the Sisters’ Journeys calendars mentions God.
Epps and Watson went into churches to urge breast self-exams and mammograms. While Watson was telling her story to a congregation of women in Waterbury, an older lady stood up and said she didn’t think breast cancer was a problem for black women.
Then there was another lady who was maybe 34 or 35 [who stood up], Watson recounted. She said she was in the midst of being treated for breast cancer, and she just lost her sister last year to breast cancer. … And we didn’t have to say anything. That’s often what happens.
Death Rates Higher
In 2001, an estimated 192,200 new cases of breast cancer are expected to be diagnosed in American women, and 40,200 will probably die from the disease, according to the American Cancer Society. An estimated 19,300 of those new cases and 5,800 deaths are expected to occur among African Americans.
While white women are more likely to develop breast cancer than black women, African American women are more likely to die of it at nearly every age, at a rate 28 percent higher, according to the cancer society.
Researchers attribute this difference, in part, to diagnosis at later stages of cancer or to more aggressive tumors.
Socioeconomic factors, such as lower incomes and lack of health insurance, may also play a role in higher mortality rates, researchers say. Low-income African American women are three times more likely to be diagnosed with advanced cancer than higher-income African American women.
Getting Families To Open Up
Oddly, the shared culture that attracts African American women to Sisters’ Journeys may also keep them away.
Nine years ago, Bettye Green helped organize Women in Touch in South Bend, Ind., to increase the number of African American women getting mammograms and provide them with support. For the first two years of her support group, two women would show up for meetings.
Lots of black women will not attend a support group, said Green, herself an African American breast-cancer survivor. They will not speak openly about something that’s really bothering them or something that’s frightened them.
Neomi Echols, a 65-year-old retiree and a member of Sisters’ Journeys, said that even her own sister didn’t want to discuss her cancer. Our parents didn’t really talk about health problems, Echols said.
At first, Echols didn’t want to talk to anyone about her cancer, not even her doctor. I thought I was just getting ready to die, recalled Echols, who lives in Meriden. But then she ran into Watson, whose parents she knew from church, at a neighborhood drugstore and confided in her.
Yvonne threw her arms around me and said, `Call me, and we can talk’.
Epps cannot stand the thought of anyone facing cancer alone, because she never had to.
When she went into the hospital for her mastectomy, her mother worked out a schedule so that a family member or friend was with Epps around-the-clock. Loved ones adorned her hospital room with pictures of her two children. As soon as she came out of surgery, a groggy Epps could detect the voices and towering shadows of her brothers. Her sister prepared her tea just the way she likes it.
And her favorite aunt slept at the foot of her bed.
That’s the kind of support Epps wants every woman to have.
She feels she owes it to the one woman she could not save.
Already, Epps knows Sisters’ Journeys is slowly breaking through the silence and the myths. When Epps came up with the idea for the calendar, she didn’t know where she was going to find 12 African American women with breast cancer who would come out publicly.
Now, as she prepares for the 2002 calendar, survivors are asking to be in it.
I just take it personal whenever someone dies [of breast cancer], especially in this day and age, because it shouldn’t be happening, said Epps. Early detection gives you choices; it gives you options; it gives you longevity. I don’t think we can be educated enough about it.