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Working to erase the racial gap in cancer mortality rates
In the third part of her three-part series for The Virginian-Pilot, 2012 National Health Journalism Fellow Amy Jeter reports on the many factors that contribute to Portsmouth's high cancer mortality rate, including race, socioeconomics, culture and possibly even biology. Other stories in the series include:
Tuesday, December 11, 2012
Cancer kills those who wait.
Barbara Bynum first learned that lesson in 1975 when her 35-year-old sister died because she didn't go to the doctor in time.
The same thing happened in 2001 to Bynum's 22-year-old niece. In between, breast cancer also took her mother after it spread to her liver. Bynum witnessed the suffering.
So it was hard to hear that Pamela McLurkin had been diagnosed with stage 4 breast cancer. That she, too, had delayed seeing a doctor.
"I felt a lump in my stomach," Bynum said.
Since moving back to Portsmouth in March 2011, Pam had worked full time as a contractor for Bynum's company, Sitter's Companion Adult Care Group. She helped elderly clients with meals, baths and cleaning.
The company didn't offer health coverage, but Bynum thought her contractors were buying their own. Pam never did.
Pam's eyes got teary when she told Bynum about the new medicine she was about to start. Bynum, a nurse, had never heard of it but tried to be optimistic.
"It's worth a try," she said.
She noted, to her relief, that Pam didn't seem to have lost any weight.
She thought about how Pam would help distribute food and clothing at church. With prayers and her faith, she had a good chance of being OK, Bynum thought. God wouldn't let her down.
She swallowed hard.
"You always have a job," Bynum said. "We will be praying for you, and I feel like you're going to beat this."
Blacks have the highest mortality rates for most cancers in the United States, although the gap has been closing.
Portsmouth, where people die of cancer at the highest rate in the state, is one of a handful of Virginia cities with a population that is majority black. Its black residents are at a greater risk of dying of cancer than its white residents.
The health community links the disparity to a tangle of factors related to race, socioeconomics, culture and possibly even biology.
Studies suggest that genetics might contribute to the high incidence of prostate cancer in black men, and that black women often have more aggressive forms of breast cancer that are harder to treat. The faster-growing cancers tend to crop up at younger ages - sometimes before a woman is old enough for recommended mammograms.
A family's cancer history offers an indication of a person's level of risk. But those who are unaware of their family's experience might not know that they should be more vigilant. And because the disease is unusual for younger women, they can't always rely on their doctors to recognize it.
Brenda R. West has heard those kinds of stories, though less frequently in recent years. She's president of the Tidewater affiliate of the Sisters Network, a national survivors group promoting breast cancer awareness in black communities.
"We're presenting ourselves in our 20s and our 30s and the doctors are saying, 'Oh you're too young. You shouldn't have breast cancer. Oh no, that's just a cyst,' " West said.
Dr. Michael Royster says the disparity has less to do with genes than with other aspects of race. Minorities are more likely to be poor, uninsured and living in communities that don't promote healthy habits, said Royster, director of the Virginia Department of Health's Office of Minority Health and Health Equity.
The pressures of making ends meet on a limited income - or handling discrimination based on race or socioeconomic status- can affect a person's well-being.
"When we think about early cancers, there's the possibility that our stress and the immune system and everything can kind of allow for those cancers to progress more rapidly," Royster said.
Patients who are poor or black also may receive lower-quality health care, he said. It could be because the patients distrust the health care system and refuse more invasive treatments. Or because a provider treats them differently. Or because of miscommunication.
West's group tries to help black women bridge the gap. Every year, the Sisters go door to door in a low-income community in Hampton Roads, delivering brochures and talking about breast health.
"The goal," West said, "is to try to get enough education into the person's hands so that we can empower them to ask the correct questions."
In July, Pam's family held a reunion at her aunt's home on High Street.
They pitched tents in the yard and served up a little of everything: steaks, sausages, string beans, macaroni and cheese, cakes and pies.
A good 80 people showed up from New Jersey, Hampton, Newport News and Portsmouth. It was the first time in decades that everyone had gotten together for an event that wasn't a funeral.
They wanted to do it now. After losing family members three years in a row, and finding out Pam was stage 4, they didn't know who would be around in 2013.
They were right to wonder, Pam thought, but she still felt uncomfortable. She hovered near the side of the house, where it was shady and her brother was grilling ribs. She didn't mind talking to the people who came over, but she didn't want to hear the sympathetic words - "It's going to be OK" - or see the expressions that went with them.
Pam noticed that two of her cousins weren't there. She asked about them, and found out both had cancer. She also learned another cousin had undergone surgery twice for breast cancer.
"We didn't realize it was this many people in the family that had cancer," she said.
Pam's parents never let on when they were sick - at least not to their children - and they didn't really believe in going to the doctor. Her mother suffered for weeks with a hernia before a doctor finally came to the house.
"It was about the size of a basketball," remembered Pam, who was 12 at the time.
Her mother was admitted to the hospital for surgery and died when her heart gave out on the operating table.
Five years later, Pam's father lay ill on a sofa at home for two weeks with a terrible cough. He died soon after he was taken to a VA hospital. His daughters learned of his illness from his death certificate.
Nearly four decades later, they're still not exactly sure what killed him.
"He had lung cancer," said Joyce Barnes, Pam's older sister.
"I thought it was in the abdomen," Pam said.
The sisters argued a bit before Joyce conceded: "Might have had them both."
They don't know much more than that about their parents' generation. They know a little more about themselves and their children: One brother died of mesothelioma, a cancer usually caused by exposure to asbestos. Joyce's son died of lung cancer, and her daughter was treated for early-stage breast cancer.
Pam's news had alarmed some family members. Her daughter rushed to the doctor for a physical in Atlanta. Joyce fielded frantic phone calls from her granddaughter after she discovered an abscess in her breast. Their eldest sister, Hattie, couldn't sleep until Pam visited her Cavalier Manor home, looking like her normal self.
Joyce marveled at Pam's attitude.
"It didn't seem to worry her," she said. "People do beat stage 4. Maybe she's going to be one of those ones that beat it."
Pam's doctors had told her to quit working after the diagnosis. She qualified for Medicaid through the Every Woman's Life health program, and that paid for her medicine, scans and appointments.
In the summer, without her jobs to occupy her time, Pam would wake up early and walk to Joyce's house, carrying an umbrella for shade. She'd wash dishes, fix her sister's hair or do some other chore made difficult for Joyce because of her arthritis. Pam would help answer the ever-ringing phone, make calls of her own and chat with any neighbor or relative who came along.
Usually they ate together, talked and watched "The Young and the Restless" in the shady back bedroom. After the sun went down, Pam would walk home.
"Once this is over, I just want to go somewhere," she said. "I hope I can get enough money together where I can just take a little trip. Nowhere special, just away from Virginia for a little bit."
In Cavalier Manor, about five miles from Pam's Port Norfolk apartment, pink flags fly in front of a brick ranch house.
"Save the ta-tas" magnets decorate a black Mercury Milan. Its license plate reads CHKTHM - check them.
Before, it read OMGNES - oh my goodness. That was Kimberly Robinson's response when the surgeon told her in 2010 that, at 32, she had an aggressive form of breast cancer that had advanced to stage 3. She discovered the tumor herself, doing a self-exam two months after seeing a doctor.
Robinson comes from a family that didn't talk about gender organs or cancer - a kind of reticence that isn't uncommon in black families, according to cancer activists and health providers. She believes her rejection of "the generational curse of silence" saved her life.
"Within African American culture, high blood pressure, diabetes is as far as the conversation will go," said Robinson, an office manager for Tidewater Community College. "The big C is taboo."
One reason is modesty about the body parts that are involved in common cancers - breasts, rectums and prostates. It's not considered proper to talk about such things, and it can be hard to persuade a person to undergo the invasive screenings needed to find those cancers in an early stage.
Beyond that, there is a vicious cycle.
It starts with a reluctance to see a doctor, because of a distrust of the health system, a belief that the fees will be unaffordable or a hope that this will go away on its own. The disease is allowed to progress, and by the time a patient seeks help, the cancer is in an advanced stage.
The person dies, and the community whispers. People who survive the disease don't talk about it, not wanting the stigma, and fear builds. So when others see warning signs, they avoid the doctor, not wanting to be given a cancer diagnosis, believing it would be a death sentence. They wait. The cycle continues.
"Years ago, in my family, if somebody had cancer, people wouldn't come around," said Pennie Faircloth, a Virginia native who is mission delivery director for the American Cancer Society's South Atlantic Division. "There was that fear: 'Are you going to catch it?' "
Anxiety leads some to hide their diagnosis - even from family members. Others elect not to seek treatment.
Jennifer Melillo has had patients who died after refusing to accept that they had cancer, and some who decided against recommended treatments, such as chemotherapy.
"There's a lot of denial," said Melillo, a family nurse practitioner with the Bon Secours Maryview Foundation Health Care Center, a free clinic in Portsmouth.
However, she's also seen black women bring daughters with them to observe gynecologic exams: "They tell their friends, 'Girl, you'd better get your pap smear.' "
Black churches have made a lot of progress bringing the cancer conversation to the forefront, particularly in Portsmouth.
Robinson wonders whether that would have helped her great-grandmother Katie. She died three decades ago after using a prayer cloth in place of medical treatment for her breast cancer, leaving her care "in God's hands."
"Had I waited, I would not be here today," said Robinson, a member of the local Susan G. Komen for the Cure's "Circle of Promise" committee. "Now my passion is geared toward getting out there and getting the word out."
The 44 bus broke down twice the morning of Pam's second CT scan in mid-September. Then it got ensnared in Midtown Tunnel traffic.
"Oh Lord," she said to herself. "Here we go."
She called Sentara Norfolk General's radiology department to tell them she'd be late. Then, she sat back and got to know her fellow passengers.
The summer had been busy. A visit from her three grandchildren - ages 11, 12 and 16 - had stretched beyond two months. Their mother said she wanted to move from North Carolina, get a job in Portsmouth and settle there with the kids. The children's father, Pam's son, lives in New Jersey.
Pam registered the kids for school, signed up for more food stamps to feed them and got them clothes at the thrift shop run by Oasis Social Ministry. She taught the girl to cook and tried to harness the two boys' energy, but it was getting harder and harder for her to manage.
The cancer pills kept her up most nights, sweating and then freezing from the sweat. At least she'd straightened out her electric bill, after getting a cut-off notice in June.
But she was beginning to notice bags under her eyes. And it didn't help when the contrast dye for the CT scan triggered a temporary allergic reaction, causing Pam to sneeze and itch.
They took images of her chest to compare with the original ones from April. The new pictures would tell her oncologist how well the treatment was working and inform his decision about what to do next.
Because her breast cancer fed on estrogen, she had been taking Femara, a pill that cut off the supply of that hormone. If she was lucky, she could continue on that therapy for a while. Her oncologist said it keeps breast cancer in check about 18 months on average.
After the Femara stops working, her doctor could try other hormone manipulation. Ultimately, though, he felt she'd need chemotherapy.
Pam cringed at the thought. The nausea. The exhaustion. The hair loss. The weight loss. The change to sick-person status and whatever came next.
She knew the future likely held more struggles, but it seemed so far away right now.
Her breast didn't hurt anymore. It looked so much better that she didn't mind lifting her shirt and showing her female friends. Now that she had Medicaid, she was seeing a primary care doctor who helped control her diabetes and blood pressure.
She was feeling pretty good.
She'd even accepted some responsibility for her situation. If she could do it all again, she'd probably have her breasts checked more often. Maybe she wouldn't have told everyone that she'd rather die of breast cancer than get a mammogram. Maybe she'd have found out sooner that cancer ran in the family.
No point in thinking too much about that now.
"A little bit of hope," she said, "is better than no hope at all."
Pam charged into her sister's first-floor London Oaks apartment like a truck barreling through the Midtown Tunnel.
She flew past her niece, who was frying liver in the kitchen, and cut straight to the dim back bedroom.
Joyce looked up from "The Price is Right" as her sister dropped to the bed.
"Guess what?" Pam sputtered. "I got good news."
"The tumor's been shrunk."
"I could tell by looking at you."
Pam grabbed for the phone on the flowered bedspread.
She started to dial.
This second part of the series series was first published in The Virginian-Pilot on December 11, 2012
Photo Credit: Vicki Cronis-Nohe | The Virginian-Pilot