Screenings help detect cancer, but can be a tough sell
In the second part of her three-part series, 2012 National Health Journalism Fellow Amy Jeter reports for The Virginian-Pilot on why people in Portsmouth are more likely to die of cancer than those living in Virginia’s rural southwest. Other stories in this series include:
By Amy Jeter
Part 2 of 3
For the first time in decades, Pamela McLurkin came face to face with that machine.
The white column with the oversized vise promised to squash her 46DD breasts like a panini sandwich. Her right side, aching and swollen, couldn't bear such torture.
Pam, dressed in a worn hospital smock, turned nervously to the woman who had led her from the lamp-lit waiting room at Bon Secours Harbour View Health Center in Suffolk:
"I don't want a mammogram."
Her last one - was it in 1993? - felt like her breasts were being pulled right off. Afterward, she ached for days.
"I will never do this again," she had told her sister Joyce and anyone else who'd listen. "I will die with breast cancer. I will never do this again."
Pam thought she was at Harbour View that day in April for an ultrasound - that's what she remembered the doctor telling her.
So, when the woman said "mammogram," Pam wanted to slap her silly.
"Let's just try it," the woman said.
Her gloved hands placed Pam's throbbing breast on the clear shelf, and the squeezing and the smashing hurt as much as Pam remembered, if not more. The pain brought tears to her eyes, though she's not the kind of woman who cries in public.
After a brief recovery, Pam was taken to another room, and the prodding of the ultrasound began. By the time she got back to the waiting room, she was disgusted.
Then came the news, which was maddeningly vague: There was too much going on in her breast. She needed a surgeon.
The report in her chart was more specific: "Highly suspicious of malignancy: appropriate action should be taken."
Cancer detected at early stages is often more treatable than if it's found later. That's why doctors generally recommend regular screenings and national advocacy groups mount awareness campaigns.
Although the U.S. Preventive Services Task Force now suggests fewer screenings for breast and prostate cancer, not everyone in the medical community agrees.
Researchers have shown that getting more people to undergo screenings - such as mammograms - leads to lower cancer mortality rates. But if screening rates are already high, problems may be more nuanced: Are people with a higher risk of cancer getting the tests they need? Are they following up on abnormal results?
In Pam's hometown of Portsmouth, where people die of cancer at the highest rate in Virginia, recent surveys indicate that residents are pretty good about getting screenings for colorectal cancer. They're also among the best in the state for getting mammograms, despite having only one place to go in their city other than the Naval Medical Center.
It's possible, given time, that Portsmouth's high screening rates will reduce its cancer deaths.
The American Cancer Society thinks the city's residents can do even better, while one government program struggles to keep pace with the demand.
"The goal," Fredda Bryan said, "is to get 100 percent of the ladies screened."
Bryan is the face of the Portsmouth Partnership to Beat Breast Cancer: chatty, from years as an American Cancer Society volunteer; no-nonsense, from more than two decades in the Navy; and passionate, from years of fighting breast cancer.
Portsmouth was one of three cities in the nation selected by the Walmart Foundation for a yearlong, $300,000 grant to address racial disparities related to cancer.
Bryan heads the effort to increase breast cancer education, awareness and screening among the city's black women. If they're 40 or older, she wants them to get annual mammograms.
"We don't think that this is an unrealistic expectation," she said.
The society hired a marketing firm to ask 300 women in the city why they weren't getting the screenings. The top answers: fear of being told they have cancer, pain associated with the screening, and lack of transportation or means to pay for the mammogram.
In response, Bryan unleashed a specially trained team of "community health advisers." The 15 volunteers with Portsmouth ties make presentations at churches and health expos. They gather names and phone numbers of women who want to talk about mammograms.
Then they call. And they follow up. If a woman gets a mammogram, they find out how it went. If she's already had one, they ask whether they can remind her in 11 months. If she needs something else, they point her to an organization that might help or to the American Cancer Society's hotline.
It works, Bryan says, because of the one-on-one contact with someone from a woman's church or sorority. The Society says a more expansive version of this approach has reduced breast cancer incidence and mortality among black women in Mississippi, Alabama and Tennessee.
"I don't want to necessarily say peer-to-peer influence," Bryan said, "but that's what it is."
Since fall 2011, the volunteers have made presentations to 1,000 women, she said. About 200 received phone calls between April and October; of those, 10 underwent mammograms.
Bryan believes the effort is already showing results. She points to a recent survey by the marketing firm in which about 70 percent of respondents said they'd had a mammogram in the past year - an increase from the firm's first study.
Still, that's lower than earlier numbers from the Centers for Disease Control and Prevention. In 2008 and 2010, about 84 percent of Portsmouth women 40 or older said they'd had a mammogram in the previous two years.
"We still have a little ways to go," Bryan said.
Now the partnership is widening its scope. Nearly half of the annual grant - a total of $120,000 - pays for two breast cancer educators representing Sentara Healthcare and Bon Secours Hampton Roads Health System. They work full time on outreach across Hampton Roads and Western Tidewater.
With the grant renewed another year for the same amount, the program soon will train volunteers to raise awareness in Norfolk. It will keep the "Portsmouth Partnership" name.
One reason for the expansion, Bryan said, is that Norfolk's demographics are similar to Portsmouth's. Another is that the partnership needed a presence in the communities where the health systems are based, and "Sentara doesn't have a breast center in Portsmouth," she said.
"When we initially started in Portsmouth, we literally were getting calls from all over Hampton Roads, so we were helping out all ladies," Bryan said. "It's not a matter of, 'OK, this is a pot of money for Portsmouth, this is a pot of money for Norfolk.' This is still just one umbrella of a program."
Before Pam's April mammogram in Suffolk, Dr. Amy Price examined her at the Portsmouth Health Department.
Pam was there because the nurse practitioner on the Bon Secours Care-A-Van had referred her to a government health program called Every Woman's Life.
Her 10-minute slot fell in the middle of a morning that was memorable to Price for the number of women showing signs of cancer.
Pam, with her big earrings and big personality, stood out.
Her right breast looked like a medical school slide of cancer. The skin had the tell-tale orange-peel texture, and the flesh was fixed to her chest, practically immovable. Price could feel the swelling of her lymph nodes.
How odd, she thought, that a woman who took such care with her appearance would allow something so alarming to happen - even if it was out of sight.
"How long has this been going on?" Price asked.
"A while," Pam answered, matter-of-factly.
Her chart showed that she'd been to the Care-A-Van the previous summer without having her breast checked, and Price thought about the way patients sometimes believe they need only to get into the same room as a doctor and the doctor will sense their health concerns without being told.
She told Pam she needed a mammogram and made a request for a surgical consult, a step she takes only in the most serious cases.
Noting that Pam had already missed a mammogram appointment and thinking of other patients who had refused treatment, Price rallied her to press on. She felt like the message got through.
Weeks later, she was still thinking about Pam. Aside from her personal style and dramatic diagnosis, Pam was such a nice person. In the world of medical superstition, that's a strike against a patient.
"In our vernacular, if you say that they're nice, it also implies that you're saying that you have fear for them," Price said. "I hate to say it, but the nice ones tend to lose."
Every Woman's Life comes to Portsmouth on the first Tuesday of each month.
Amy Swink fans out brochures, readies rubber model breasts for exam demonstrations and creates a makeshift waiting room off a side entrance to the Portsmouth Health Department.
Price sets up in the back. As the medical director for the Bon Secours Care-A-Van and Maryview Foundation Health Care Center, she's loaned out on these days to cycle through a rotation of patients in exam rooms A through E.
They start arriving 10 minutes before 8 a.m., and they keep coming until noon, about two dozen in all. They'll get a brisk clinical breast exam and cervical cancer screening, and within a week, a free mammogram at Harbour View.
"Early intervention," Swink said, "is what we want to see happen with these folks."
Funded by state and federal money, Virginia's Every Woman's Life program provides gynecological screening exams for low-income women who are uninsured or underinsured.
With a budget of about $3 million, the program serves 8,300 women at 30 sites across the state. Eastern Virginia Medical School manages the services for Norfolk and Portsmouth, and Swink is the coordinator. About 750 women got mammograms through her site last year, and some will continue to do so annually until they're 65. Others - especially the younger ones - are penciled in if they have cancer symptoms, such as a breast lump.
The stakes are high: Those who get into Every Woman's Life before a cancer diagnosis get fast-tracked to Medicaid coverage for their treatment. For women not in the program, acquiring Medicaid can take precious weeks - or not happen at all, Swink said: "It's usually a pretty sad story."
She always finds space for women with potential problems, like Pam. The number has risen steadily in recent years, though most aren't ultimately diagnosed with cancer.
Those wanting to get on the regular preventive health schedule, including some referred by the Portsmouth Partnership, have no guarantee.
At one point, the demand became so high that Swink closed her waiting list.
"It just became time-consuming," she said. "People calling in, us having to tell them why we couldn't do it, why we couldn't see them. Then, they'd get frustrated, too."
Instead, Swink takes down contact information - usually up to 100 names by October. Then, during National Breast Cancer Awareness Month, she looks out for free mammogram events.
She gets screenings for the women she's able to reach and refers new callers directly to these events.
By the end of October, Swink had made it through her list. A week later, she'd already started over.
"That's the way it is," she said. "We've been very fortunate - we've been very blessed - to be able to refer people to get mammograms in October."
"Do you understand what I'm telling you?"
Dr. Jay Collins sat on a rolling stool in front of Pam, who wore a paper vest that opened in the front. Two medical students stood beside her. A nurse hovered nearby.
Nearly two weeks had passed since the April mammogram and ultrasound at Harbour View. Outside, spring was growing warmer and brighter. In her Broad Street apartment, Pam prepared for the worst. She prayed and prayed.
"Well, I've got cancer," she told herself. "Ain't nothing I can do about it. It's there now. I've just got to live with it. And try to live a good life."
The doctors couldn't confirm it until she had a biopsy.
Pam already had a down feeling when she met with Collins, the surgeon, for the results.
She knew what he was going to say, so when he said it - "You have breast cancer" - she simply answered, "OK."
It made him wonder if she understood.
"Yes," she said.
"You're taking this a little too well."
He asked whether she had family there with her.
He asked how she was going to get home.
"I'm OK," she said. "I'll catch the bus."
He gave her an armload of booklets about cancer.
"If you get depressed," he said, "let me know."
She said she would. But she didn't get depressed. She didn't even cry - not yet.
A few days later, after more tests, a cancer doctor gave her the details.
"I'm not going to sugarcoat things," Dr. George Saman said.
He told Pam that her cancer was at stage 4, the highest step on the cancer-severity scale.
The scan showed multiple tumors in her chest, and the malignancy had spread to her lymph nodes and chest cavity. It had not reached her lungs, liver, bones or brain.
Pam let out her breath in a long sigh.
"If you want to take that breast, just take it," she said, "because I'm tired of walking around with them anyways."
"There is very little, if any, role for surgery here," Saman said carefully.
Because her type of cancer feeds on estrogen, he put Pam on Femara, a hormone pill that decreases the amount of estrogen the body produces. It would take at least three months to determine how well that treatment was controlling the disease. There is no cure for stage 4 cancer.
Pam didn't ask how much time she had left, and Saman didn't offer an estimate.
She held out until she reached the parking lot, where a colleague waited to drive her to work.
Then she broke down.
Tomorrow: The treatment
Part one of this series can be found here
This second part of the series was first published in The Virginian-Pilot on December 10, 2012
Photo Credit:Vicki Cronis-Nohe | The Virginian-Pilot