For Blacks, Breast Cancer is a Plague of Neglect

• Part One: Cause & Controversy
• Part Two: A Plague of Neglect
• Sidebars: Risk Factors; Toxic Links; Long Island
• Printable: Download the magazine-style PDF

By Carl Hall, special to Newsdesk.org

Dr. Judith Luce, head of the community breast cancer treatment center at San Francisco General Hospital, took a rare break one recent spring day from one of the busiest caseloads in Bay Area health care.

She spent a full hour outlining what she considers to be the real Bay Area cancer nightmare.

It’s not about Marin, Luce said, it’s about women in areas such as predominantly African-American, low-income Bayview/Hunters Point (Yahoo map) in San Francisco.

The San Francisco neighborhood is perhaps best known for the Hunters Point Naval Shipyard, where residents suspect decades of miscellaneous dumping of cleaning chemicals, industrial solvents and other toxins nobody has fully cataloged.

Cancer Cluster?

The Navy has now pulled out, leaving behind a coveted swath of real estate, but the expense of a full-scale cleanup is holding back waterfront redevelopment.

The shipyard has also become a symbol of how little attention is being paid to an area that by all accounts must have at least as many environmental exposures to cancer as would San Rafael or Sausalito.

Subsequent studies appeared to bolster the notion that San Francisco had a relatively high incidence for two types of cancers — breast and cervical — affecting African American women in Hunters Point.

Cervical cancer is considered less likely than other types to have an environmental component. Cancer in fatty tissues such as the breast, however, are a different story, since many toxins are fat-soluble and so may disproportionately affect breast tissue.

“Environmental activists in Hunters Point felt they were being subjected to high cancer risks because people there were living in a toxic dump, which is basically true,” Luce said, recalling the origins of a nascent San Francisco toxic-awareness movement in the late ’80s.

Inconstant numbers

But it was later discovered that higher breast cancer rates affected only African American women under age 50. In subsequent follow-up studies, even these apparent differences have disappeared.

“It’s not a real thing,” Luce said of the suspected Hunters Point/Bayview cancer cluster (PDF.

“All said and done, it’s not at all clear there’s any higher risk of breast cancer based on where you live,” she added. Nor did she see anything surprising about the Marin County statistics.

“In Marin there’s a higher rate because Marin is so overwhelmingly white,” she said. “It’s demographics and lifestyle. It isn’t where you live that makes the difference. Where ever you find affluent, professional white women with few kids and lots of college education, you find higher rates of breast cancer.”

Barbara Brenner of the San Francisco-based nonprofit Breast Cancer Action remains convinced that cancer in Hunters Point and many other lower-income communities with “must have something to do with the toxic soup in which they swim.”

Studies to prove it tend to be expensive, hard to design and time-consuming, but Brenner argues that there is no choice but to keep focusing on environmental factors “to understand what among them is contributing to breast and other cancers, and then how the risk can be reduced.”

Blacks Take the Hit

Breast cancer cases in predominantly black Hunters Point tend to be diagnosed much later than in well-off, white Bay Area enclaves like Marin County.

And fewer African American women survive the disease.

“Women are much less likely to get diagnosed early on in this community, are less likely to have regular mammograms, and when they get the disease the outcome is worse. They don’t do as well,” Luce said.

For women at Marin General, about 80 percent of breast cancer cancer cases are detected when treatments are most likely to succeed — 20 to 25 percent at the earliest, noninvasive “in situ” stage, and over half at the invasive stage.

At SF General, providing mostly last-resort health care to the uninsured, fewer than 10 percent of breast cancer cases are picked up in situ, while only 30 percent were found at in the invasive stage.

Although breast cancer is most commonly diagnosed in older white women, the latest evidence also shows that among women younger than 45, African American women have the highest rate of breast cancer.

Once diagnosed, they also have the highest death rate from the disease, in part because cancers in younger women tend to be caught at a later stage and seem to be a more aggressive form. From 1973 to 1996, the incidence rate for breast cancer rose 25.3 percent in white women. In African America women the rate rose 36.7 percent.

Hard Numbers

Death rates from breast cancer are reported to be falling in the United States overall. For black women, however, the picture is less positive: From 1992 to 1996, mortality dropped 5.5 percent in white women while edging higher, up 0.4 percent, for black women.

Ligala Manns, an African American resident of San Francisco and a 34-year-old mother of two, lost much of her family to cancer during the past decade, and is trying to figure out why much of the community not demanding better from the medical system … or even taking advantage of what preventive health measures are available.

Her own mother succumbed to breast cancer at age 56 last May; her sister also died of breast cancer in October, 1993. Lung cancer took her father in the spring of 1990. She recalls one of her grandmothers also died of breast cancer many years before. Manns has had no sign of the illness, but gets screened regularly and can only hope the tests keep coming up negative.

Although there is no clear evidence of health problems from the Navy shipyards, she is convinced her mother, who grew up in Hunters Point, was living in “the middle of the toxic zone,” a problem that that will be difficult to change for current and future residents.

“Even if they do clean it up there’s a lot of toxins left behind in the soil and the water,” she said.

She blamed a rapid decline in the health of her mother and sister on their inability to cope with the trauma of breast cancer and a treatments that included mastectomy, chemotherapy and hair loss.

“It was depression more than anything. You lose your breasts, lose your hair. There are stigmas attached to that, for African American women especially … They don’t seek therapy like white Americans,” Manns added, “even though African American women would benefit the most. It’s ignorance, really.”

Funding Crisis

Manns said that view may be unpopular, but is convinced that the emotional toll of illness, a lack of education, poor diets and other lifestyle factors are major contributors to the lower survival rates.

But so far there just isn’t enough money devoted to the plight of African-American women in Bayview/Hunters Point. Not enough for research, not enough for community outreach, not even enough for treatment.

In a world-famous city known for its six-figure dot-com incomes, there was no money around to keep a UCSF “mammovan” — a mobile breast-health screening unit — on the road. The van sat for years in a city parking lot, broken down.

“We finally paid someone to take it away,” said Meridithe Mendelsohn, administrator for the breast care center at UCSF’s Mt. Zion campus. “The van itself was broken and couldn’t be fixed, and all the equipment was 10 years old and outdated anyway.”

Record of shutdowns

The UCSF van used to roam through a six-county area, setting up on the streets of Hunters Point as well as in other pockets of underserved women, including some in Marin and other affluent counties.

But fundraising couldn’t keep pace with the cost of equipment, staff and administrative backup.

“It’s not just a van, you have to have a whole system in place,” Mendelsohn said. “It’s very important to be able to follow up with someone if you do find a positive result. Women need to have a place to get treated.”

A new UCSF mammovan is in the works. Mendelsohn estimated it will cost about $1 million to get it on the road, including $500,000 for the van and equipment, plus another $500,000 for a year’s operating budget.

Donors have been lined up to cover about half the total needed. There are also two state programs, a breast cancer early detection program and a fund for treatment subsidies, that UCSF hopes to tap into, along with other grant programs.

Meanwhile, two private mammography clinics in the city, Mission Imaging and Van Ness Imaging, both of which were relatively accessible to women in the underserved areas of most interest to Luce, are both long gone.

Shortage in San Francisco

It costs a lot of money to reach out to San Francisco’s low-income communities, and the challenges are daunting.

Dianne Carr, director breast and cervical cancer services in the San Francisco Department of Public Health’s Office of Women’s Health, says the total budget for breast cancer outreach and care is “around $850,000 right now.”

About half that money is federal, and disbursed through the state to city health department clinics, which serve San Francisco’s poorest women. “That’s for screening, and outreach, education, staff to support the programs,” said Carr.

Clinic patients in need are referred to SF General, where the city’s general fund has provided about $450,000 for two nurse practitioners (one who works out in the communities) and four “women’s care navigators,” said Carr, who offer advocacy, support and education.

“We only have four patient navigators, that’s not enough,” she noted. “We’re rich compared to many other counties in California, and I think the mayor’s office has been very responsive … but you know you can always do more. We have one patient navigator who speaks Chinese [and one] that speaks Spanish, you know that they’re both pretty busy.”

Carr, resigned to financial realities, is bemused when asked what her “dream budget” might be.

“I haven’t thought about that, not really,” she said. “I’d like to have another $500,000 I guess. Why not?”

Ideally, Carr wants SF General to be a place “where a woman can walk in and get her mammogram, and if she needs an ultrasound, and then if she needs to go breast clinic,” it would all be there, all integrated, “a little more user friendly. We’re not working in isolation, we have to work with other departments that are also faced with budget constraints and budget changes.”

More in Marin?

For Dr. Luce, the Bay Area cancer “cluster” has to do with economics, not suspicious substances.

Any toxic problems in Marin, she figures, must surely pale in comparison to what the women of Hunters Point must live with every day, and there’s little clear evidence of a toxic cloud even at Hunters Point.

No one suggests the environmental research should not be done. “The question of whether there are significant factors in the environment that contribute to breast cancer problem is open,” Luce said.

Still, why would there be more of that in Marin than anywhere else?

“Disparities in cancer rates are there, but so are differences in ethnic breakdowns and community income,” Luce said. “Higher income, better educated women have fewer children. So there’s less exposure to sex hormones. Maybe that’s enough to explain it.”

A Tale of Two Counties

Most women in Marin County need not worry much about resources for care once they are diagnosed with cancer, although the county does have small pockets of low-income minorities. By and large, the community standard of health care are among the best in the country.

For the women of Hunters Point — and all the underserved minorities and poverty-class citizens of San Francisco County — the burgeoning community-research projects in Marin may shed some light far beyond those cloistered grounds. Maybe even in their own neighborhoods.

But the realization of that hope is a long way off.

Perhaps community activists in San Francisco should take some cues from their Marin counterparts, who succeeded in getting the attention and commitment of Nancy Rubin, the region’s top health officer.

As a former health official in San Francisco, Rubin watched the early years of the AIDS epidemic at close quarters, back when nobody wanted to believe the word on the streets about a mysterious “gay cancer” that was moving through the community.

“I have learned to pay attention and follow the instincts of my constituents,” she said. “People were saying, ‘it’s in the body fluids, it’s in the body fluids,’ and the scientists were saying, ‘no way, our studies show there’s no evidence.’ And then it turned out that the gay men in rollerskates dressed up in nun’s habits were right.”

For Francine Levien, breast-cancer survivor turned community warrior, the fight must be waged no matter what the experts say.

“We’re starting this on a grassroots level,” she said. “We couldn’t get any cooperation at first from anyone in the medical or scientific community. They just said we were all rich, white and well-educated, and that had something to do with disease rates. But I didn’t believe it then and I don’t now.”

Carl Hall is a San Francisco Chronicle science writer and the San Francisco Newspaper Guild union rep.