Dozens of corporations promise donations to breast cancer research with the purchase of certain products that are part of their special “pink ribbon” promotion for Breast Cancer Awareness Month in October:

. A $2.99 bag of pink and white M&Ms will yield 50 cents for research, according to the company’s Web site.

. Line up a list of per-mile sponsors, and test drive a BMW.

. Donate $5 and wear dungarees to work on Lee National Denim Day.

Year round, consumers can purchase one-serving tubs of Yoplait yogurt with a special pink lid, which can be cleaned and sent back to Yoplait for a company donation of 10 cents per lid.

Or stock up on postage stamps, tea, dog food, pink paint, electronics, cosmetics, pink kitchen appliances, toilet paper, golf balls, pink-laced sneakers, scented candles, olive oil, commercial carpeting, fresh flowers and lip gloss, all bearing what seems to be the corporate logo of the breast cancer industry, the pink ribbon.

But some in the breast cancer community – including patients, survivors, their families and advocates – are frustrated with the Madison Avenue sponsorship of this deadly disease. They say it pads corporate coffers while creating a feel-good sisterhood of pink-ribboned consumers; that it promotes a softened, “feminized” acceptance of a deadly, disfiguring disease that strikes more women – and more men, though they’re in the vast minority – now than it did 30 years ago.

Worse, they charge, the scattershot funding supports a disorganized system of breast cancer research that has failed to promote adequate understanding of the cause and progression of breast cancer, failed to develop effective strategies for early detection, and failed to refine effective treatment options that minimize suffering, disfigurement and emotional crisis.

In an electronic campaign circulating by e-mail all over the world this month, the California-based group calling itself Breast Cancer Action is urging would-be donors to do a little homework before buying into corporate fund-raisers for breast cancer research – to “Think Before You Pink.”

Pieces of the puzzle

“Solving breast cancer is like solving a jigsaw puzzle,” said the narrator of Breast Cancer Action’s 30-second animated “Think Before you Pink” campaign announcement. “There are so many pieces, and right now they’re all so scattered. Over 35 federal agencies, many foundations and lots of pharmaceutical and biotech companies are working on the breast cancer problem. Unfortunately, they’re not working together. We don’t know how much is being spent, and they’re not even asking the right questions.”

BCA also has paid for a series of print advertisements that have appeared in several national newspapers this month, highlighting the less-than-high-minded donating practices of some pink-ribbon companies. One advertisement, headlined “Who’s Really Cleaning Up Here?” spotlights high-end Eureka vacuum cleaners. Eureka’s “Clean for the Cure” promotion nets just one dollar for research per vacuum cleaner purchase, the ad claims. The same ad says the American Express company’s “Charge for the Cure” campaign, recently withdrawn, donated just one penny per transaction, regardless of the amount of purchase.

“Will your purchase make a difference? Or is the company exploiting breast cancer to boost profits?” the ad asks.

Breast Cancer Action’s electronic animation and print ads may be viewed online at www.bcaction.org.

“We’re not arguing for more research funding. Were saying we should be asking how much money is already being spent, and how,” said Barbara Brenner, executive director of Breast Cancer Action.

In a recent phone interview, Brenner said that because funding is so competitive and the potential for glory and profit is so high, breast cancer researchers work in comparative isolation, not sharing with each other the focus of their inquiries or the progress they’ve made.

Brenner says it’s time for researchers to cooperate more.

“Researchers need … to agree on a structure and a common vocabulary,” she said. And they need to identify and agree on a few, specific, high-priority questions about breast cancer to help guide their efforts and make the best use of their funding.

Breast Cancer Action, whose activist members call themselves “the bad girls of breast cancer,” has developed its own list of questions:

. Who needs treatment? Because breast cancers are not life-threatening unless they spread to other parts of the body, some women undergo the trauma of surgery, radiation and-or chemotherapy unnecessarily. Older women, especially, may live out their lives in good health with untreated, isolated cancer. Researchers should find reliable ways to predict reliably which tumors are likely to spread.

. How can metastatic cancers be effectively treated with less toxic and less traumatic procedures? Brenner is quick to acknowledge that treatment has improved significantly in the past 20 years, with more women likely to have a cancerous area removed than to lose an entire breast. Treatments such as radiation and chemotherapy have been refined so patients are better able to work, care for their families and take part in other meaningful activities while being treated for their cancer. “Every change in breast cancer has come partly from science, but largely because activists have demanded it,” Brenner said. Many of these less invasive, less toxic responses were developed in response to feminist groups such as BCA, and women must continue to pressure the research community for less devastating, more effective ways to deal with their cancer, she said.

. What is the connection between exposure to environmental toxins and breast cancer? BAC alleges that many corporate breast cancer research sponsors – including cosmetics companies and the automotive industry – are responsible for exposing workers, consumers and the general public to dangerous, cancer-causing agents. Does industry funding pressure researchers to focus on detection and treatment rather than on cause? BCA is pushing for better technology to show the correlation between toxic exposures and breast cancer.

. Why do cancer rates differ between racial and ethnic groups? For example, even considering differences in access to health care, studies show white women are more likely to be diagnosed with breast cancer, but black women are more likely to die from it. Brenner said research needs to focus on reducing risk for all women, and understanding racial or cultural links is key.

Responding to the message

Though unfamiliar with the 10-year-old Breast Cancer Action organization, Dr. Barbara Knowles, senior staff scientist and associate director at The Jackson Laboratory in Bar Harbor, said the facility serves as a kind of clearinghouse for scientists around the globe conducting research on a wide range of topics, including breast tumors.

Besides hosting international conferences where researchers share their ideas and progress, the institution “acts as a kind of central receiving point for all kinds of data,” she said. Jackson Lab also is playing a key role in developing the kind of universal vocabulary for researchers called for by BCA. Scientists at the lab are working closely with computer innovators to develop sophisticated ways of tracking and correlating information to reveal elusive cause-and-effect relationships – such as the potential impact of day-to-day exposure to common environmental substances on cell growth and reproduction, Knowles said.

As one of the premier mammalian genetics research centers in the world, The Jackson Laboratory has been involved since the 1930s in mapping and manipulating the genetic structure of mice, with an underlying goal of understanding the factors that influence susceptibility to cancers and other abnormalities. And though the mouse genome is known to be about 99 percent the same as humans’, and though Jackson researchers have made steady, important progress, the results don’t translate into clinical applications for your doctor’s office, Knowles said.

Jackson Lab receives funding for its work from myriad sources – the National Cancer Institute, the American Cancer Society, the Department of the Army, and the Komen Foundation, to name a few. While the institution was among the first to focus on genetics as a key factor in understanding the development of breast tumors in mice, Knowles said, little research specific to breast cancer is under way. But virtually all the work at Jackson Lab bears at least indirectly on cancer of all types, she said.

“Everything you need to know about cancer is what you need to know about all cells,” Knowles said. “It’s important to fully understand the genetic process and all the interactions that may lead to tumor formation.”

Dr. Susan O’Connor, a Bangor surgeon, says there have been dramatic improvements in responding to breast cancer in just the 10 years she has been practicing here and even more so in the 20 since she started her medical education.

O’Connor, whose surgical practice is about 75 percent related to breast cancer, said she can now tell newly diagnosed patients that they’ll have less surgery with better results; that they have better options for reconstructing an artificial breast if needed; and that chemotherapy is more effective – though it can still make a patient feel terrible.

In the mid-1980s, O’Connor recalled that any diagnosis of breast cancer automatically meant a radical mastectomy – the complete removal of the affected breast, along with an extensive underarm area containing lymph nodes. O’Connor described it as “a huge, deforming surgery.” To make matters worse, she said, women preparing for surgery to check out a questionable breast lump signed a consent for mastectomy before having anesthesia. If the lump were found to be cancerous, the breast would be removed immediately, since there was often no other option.

“Every woman woke up wanting to know if she still had a breast,” O’Connnor said. The pre-operative consent for mastectomy is no longer practiced, she said.

The practice of removing just the tumor has become commonplace. In cases where the removal of the entire breast is advisable, it is often possible to determine whether the lymph nodes have been affected and to leave the underarm area intact if they have not. This greatly reduces medical complications and deformity, and makes the construction of an artificial breast simpler and more aesthetically pleasing.

O’Connor said the frustration of groups like Breast Cancer Action is understandable, but probably ill-informed.

“I suspect these people don’t do research themselves,” she said. “They don’t understand how research gets done, how progress is made. The more people are working in diverse directions, the better … otherwise, how do you think outside the box?

“Most people who get breast cancer don’t die from it now,” she said. “I still hate telling my patients the worst news of their lives … but the vast majority of them, I can help.”

Grieving and sharing stories

O’Connor is right; despite the progress that has been made, a diagnosis of breast cancer is really, really bad news. But for many women, it is softened just a bit by the presence of groups like Encore, a partnership between Eastern Maine Medical Center and the Bangor YWCA funded in part by the Komen Foundation’s local Race for the Cure. Providing education and support to Bangor-area women – and men, if they should come – with breast cancer, the group meets twice a month to laugh, grieve, share stories and swap coping strategies.

At a recent brown bag lunchtime meeting, about 15 women arrived, representing a wide range of ages and experiences. They expressed a variety of reactions to Breast Cancer Action’s contention that research is stalled somehow, that progress in preventing, diagnosing and treating breast cancer is too slow in coming.

“I am wicked pissed off – I’m going to die from this disease, and they’ve been researching for ever and ever.”

“They can’t even tell you if it’s going to spread.”

“What would happen to the economy of the world if breast cancer were cured tomorrow?”

“They make more money if they don’t cure it.”

“There are lots of different kinds of breast cancer; that probably makes progress slower.”

“Why is there a blood test for prostate cancer but not for breast cancer?”

“Thirty years ago, you had no choice. You went for surgery – a radical mastectomy – and cobalt treatments.”

“Twenty-three years ago, you went to another part of the state, so your neighbors wouldn’t know.”

“No one talked about it.”

“No one was talking about it in 1991 [the first Race for the Cure].”

“It’s a lot easier to talk about it now.”

“I’ve been going through this for 13 years. Every time I have chemo it’s different, but it’s never any easier.”

“You have to have a doctor who believes you’re going to survive.”

“Cancer is so scary – if you’ve been through chemo, you have a wig or a scarf or you’re bald and pasty and you look like you’re going to die – people don’t know how to talk to you. They’re afraid you’re going to die.”

“So what if you die – they only want to talk to people who are immortal?”

The Encore group agreed that, whatever its real or imagined shortcomings, Breast Cancer Awareness Month is a good thing. Raising money, raising awareness, opening communication, offering support, comfort and hope to the thousands of women who are diagnosed with this frightening, deadly disease each year – these are important accomplishments, they said.

And the pretty, little-girl pink ribbons so many of us are sporting this month?

“What’s wrong with pink?” shrugged one group member, heading back to work. “It’s better than black.”

Detailed information on breast cancer can be found at www.komen.org

Learn more about the “Bad Girls of Breast Cancer” and their concerns at www.bcaction.org

For more information about meetings of the Encore support group in Bangor, call 941-2808.

Fast facts about breast cancer

. In the United States, breast cancer is the leading cause of cancer deaths among women ages 40 to 59, second only to lung cancer.

. The Susan G. Komen Foundation projects 215,990 new cases of invasive breast cancer among women in the United States during 2004. An estimated 40,110 women will die this year from breast cancer.

. About 1,450 men will be diagnosed with breast cancer this year, and 470 will die.

. Uncontrollable risk factors for cancer include being female, aging, early onset of menstrual periods, late onset of menopause or a mutation in a specific gene, which can be detected through genetic testing.

. Controllable risk factors include having more than one alcoholic drink per day, obesity after menopause, using oral contraceptives for five years or longer, never having children or having your first child after age 30, and hormone replacement therapy that combines estrogen and progesterone.

. Early detection is important to successful treatment. But screening technology, including mammogram, is still far from accurate.

. The Komen Foundation’s Race for the Cure is the largest breast cancer fund-raising event there is, in terms of the number of participants and the dollars they raise. It takes place in just about every U.S. state and several foreign countries at different times throughout the year.

. More than 2,600 Mainers registered for Bangor’s Race for the Cure last month. Not all who registered showed up, and not all who started the 5-kilometer (about 3 miles) road race finished. All told, the event raised about $110,000 for breast cancer. The Komen Foundation stipulates that 25 percent of the proceeds be used to fund research, while the remaining 75 percent stays in Maine to fund breast cancer education, screening, support and other services.

Source: the Susan G. Komen Foundation