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Photograph by Paul Myers First, Do No Harm Breaking down the whys and wherefores behind the Bay Area's breast cancer rates is a fearsome feat--and this time, it's personal By Allie Gottlieb DON'T DO ANYTHING! If you move a muscle, you're going to get breast cancer. Specifically, don't develop breasts, don't be white, don't be rich, don't live in the Bay Area (or Connecticut), don't act like a person who lives in the Bay Area (or Connecticut), don't wear underwire bras, don't eat chemicals, don't drink alcohol, don't get X-rayed, don't have your period, don't drink out of plastic, don't wait until you're an adult to have kids and don't ever stop breast-feeding. Don't breathe in pesticides, don't have a family history of breast cancer or ovarian cancer, don't not have a family history of breast cancer, don't get a mammogram, don't not get a mammogram. Don't be a woman. And most importantly, think positive. The Bay Area Curse Here in Northern California, we've got high technology, nice weather, progressive people, leading universities and what appears to be the highest breast cancer rate in the world. So, it's no surprise that the other day I overheard the woman next to me at the gym talking about how her mom's got it. My ears perked up because I love to listen to other people's private conversations. And because my mom had breast cancer. It's statistically impossible that we were the only two people in this Bay Area 24-Hour Fitness whose moms have had the country's No. 2 cancer for women (after skin cancer). Breast cancer is the most common malignant cancer among women in all of California and in the Santa Clara County region, including Monterey, San Benito, Santa Clara and Santa Cruz counties. Over the last complete decade tracked--1988 to 1999--15,660 new breast cancer cases were reported. That's a third of all new cancer in the region's women. Lung cancer kills more women, and more people overall. But breast cancer is the leading killer of women ages 34 to 54. Globally, according to Cancer Epidemiology and Prevention, the 1996 book by M.D.s from the University of Michigan School of Public Health and the National Cancer Institute, the highest breast cancer rates reported "are those for the white population of the San Francisco Bay area." In a nutshell, it's a stubborn problem with devastating consequences that has grown across the country from one in 22 women in the 1940s to one in eight women today. And Marin County has seen a 60 percent increase in breast cancer rates in the last decade alone. Scary statistics arise on the other coast, too. According to Disease of the Breast, a book published in 2000 and written by medical doctors from various universities, the number of breast cancer cases is also higher than the national average in the Connecticut area, where I lived with my mom, breast cancer victim Marcia Vivian Holly, Ph.D. The Breast-Laid Plans: Chicki Downs, bra-fitter extraordinaire, works magic on the mastectomied. If It Happens To You: A woman living with breast cancer talks about what she's learned--so far. Getting Help: Local and Internet-based breast cancer resources. My Mom's Bosom I miss my mom. She's been gone for almost 13 years. She was a feminist and anarchist-type intellectual with fine, readable handwriting who skipped two years of high school because of the giant logic-filled brain under her silky, jet-black hair. She was feverishly independent (and--perhaps not unrelated--was also twice divorced). She was a freelance writer and editor for several New York-based medical journals. Smart, sophisticated and classy, she read D.H. Lawrence, Jane Austen and The New York Times. For ideological reasons, she didn't let me watch Charlie's Angels, but she did let me watch The Incredible Hulk because of its celebration of mood swings. Despite being liberated, she wore makeup. And she had big boobs. By the age of 13, my mom's breasts were already bigger than those belonging to most girls her age, judging by the photos I have of her. She posed as a sex kitten for high school calendars. Three decades later, by age 46, she found a cancerous tumor in one of them. Despite a lumpectomy, radiation, yoga and carrot juice, two years later the cancer returned. On Aug. 25, 1989, two weeks after my 19th birthday, when my mom was 48, I saw her die. Her eyes were shut. She had been weakly gasping for breath at a slow and steady pace. Then, kind of suddenly, there was blood on her pillow case. My calls for a nurse at the hospice didn't bring the frantic hospital-drama response (with the yelling about blood loss and cries of "Clear!") that I expected. Instead, a nurse calmly walked over and inspected my mom, briefly wiping her mouth with a towel. Then the nurse just walked away. She may have called for a doctor--I'm not really sure--but it was too late. It had already been too late weeks or months earlier. Still, I'm not sure I knew that, and I didn't care. At that moment, I wanted to see medical professionals running around doing everything humanly and technologically possible to save my mom from leaving this earth. Suddenly, blood (all the blood in the world, actually) drained out of my mom's mouth. That was that. She died, and I couldn't decide whether or not to touch her. She might have been too cold or too still. So, I compromised and took off her gold watch and held it in my hand. The Game of Risk I'd like to spell out once and for all how some women get breast cancer, how others avoid it and who to blame if you do happen to get it. I've spent much of my adult life worrying about it. And there are piles of research on it. Unfortunately, oncologists, epidemiologists and med-school professors, for whom tumor terminology is a fluent language, not only lack many absolute answers but keep dismantling the ones we thought we had. For instance, a June New York Times article reported that doctors have a spotty track record on reading mammogram X-rays correctly, casting further doubt on the ongoing international debate over the efficacy and use of this detection system. Anyway, here's the latest. "Ionizing radiation is the only proven environmental cause of human breast cancer," according to a report released in February called State of the Evidence: What Is the Connection Between Chemicals and Breast Cancer? Ionizing radiation, which affects the formation of new cells, comes from X-rays and other medical procedures; mining, uranium and other radioactive-ore processing; and nuclear-weapon production, nuclear leaks and nuclear-power-plant waste. But clearly, people get it for other reasons. Most of the research done to date links breast cancer to the environment--things one can't control (like secondhand smoke or computer companies dumping their carcinogenic waste into the water)--and to lifestyle choices, which one can control (such as putting oneself in the position to breathe in paint fumes). These danger categories include factors that researchers call "risks," in effect leaving the wiggle room not afforded by the less ambiguous term, "causes." The recent report on chemicals and breast cancer, edited by Nancy Evans, a breast cancer survivor and health-science consultant for an organization that aims to eradicate the disease, the Breast Cancer Fund, attacks the country's failure to acknowledge likely causes of breast cancer when those causes haven't been proven to death by a series of repetitive research studies. "We ignore at our peril the increasing evidence that chemicals are contributing to the rising tide of breast cancer," the report states. "It is in our power to change the course we are on. ... Now is the time." More than half of breast cancer cases are unexplained by what the medical research world knows about the disease. Many human-made chemicals, for instance, are proven toxins, but not declared breast cancer risks. The United States allows the use of 85,000 synthetic chemicals, despite the fact that only 7 percent of them have had their toxicity completely checked out. Forty-three different chemical compounds have given breast cancer to lab animals, but none of these is on any kind of banned list. The chemical report outlines exposure to the following suspects: estrogens and progestins (found in oral contraceptives and hormone-replacement therapy) and synthetic estrogens (also called xenoestrogens, found in pesticides, fuels, plastics, detergents and prescription drugs). Xenoestrogens include the following: bisphenol-A (BPA, found in some plastic food containers, including some baby bottles); polyvinyl chloride (PVC, found in medical products, appliances, cars, toys, credit cards and rainwear, and used in food packaging manufacturing; vinyl chloride (may be released during the production of PVC, found in the air near hazardous waste sites, landfills and tobacco smoke). The list of seemingly common chemicals continues: dieldrin (a pesticide now banned in the United States); simazine (a pesticide found in some lawn chemicals used widely in Florida, California and the Midwest); methylene chloride (found in spray paints and paint removers); methoxychlor, endosulfan and lindane (pesticides); and diethylstilbestrol (DES, a now-banned drug that was prescribed between 1941 and 1971 to millions of pregnant women to prevent miscarriages). The report even places a little blame on supposedly healthy phytoestrogens (plant estrogens). "Such foods as whole grains, dried beans, peas, fruits, broccoli, cauliflower and especially soy products are rich in these phytoestrogens. Although scientific evidence suggests that humans may benefit from plant-based estrogens, these substances are not totally benign." Studies link the larger amount of plant estrogens in Asian women to a lower rate of breast cancer. But the report warns that genistein, a type of phytoestrogen, if given "during critical periods of development may cause cancer." One critical period is the first week after birth. Also, according to a 1995 study and others cited in the report, solvents found in such industries as metal and clothing manufacturing, and particularly computer part manufacturing, greatly increase breast cancer risk. The substances implicated are styrene, methylene chloride, carbon tetrachloride and formaldehyde. Also problematic: metals and acid mists. The industries that use these dangerous things are metal fabrication, wood and furniture work, chemical and clothing manufacture. A study of Danish women ages 20-50 showed that workers in these fields "had a two-fold increased risk of breast cancer." Finally, an air pollutant called 1, 3-butadiene, created by combustion engines and petroleum refineries, and by making and processing rubber products and some fungicides, gets credit for causing mammary tumors in rats as well. Locally speaking, Santa Clara County has 23 Superfund sites, polluted primarily by the high-tech industry, according to an article in the "Silicon Shame Series" published last fall by local magazine Elander. "The toxins used and spewed by high-tech companies are far from benign." The article goes on to report how local companies have leaked toxins into the groundwater. But this pollution ends up mostly impacting low-income areas, so it's not immediately clear that the high-tech pollution can explain high breast cancer rates among residents of affluent neighborhoods. Again, people most likely to know what's up with the high rates of breast cancer don't know. An undated article from the Marin Independent Journal quotes Marin Breast Cancer Watch interim director Janice Barlow as follows: "I really don't know what the cause is in Marin. But clearly breast cancer incidence so far is associated with higher economic status and education. Those two variables are not risk factors as such. They're just sort of a demographic of women who get cancer. Obviously, some behavior is involved because going to school and having money shouldn't cause breast cancer. ... There's something that population is exposed to." Of course, further confusing the issue, the results of the National Cancer Institute's recent study of breast cancer and environmental toxins on Long Island, as reported in the San Francisco Chronicle on Aug. 6, found that women exposed to polycyclic aromatic hydrocarbons (from car and plane exhaust, cigarette smoke, smoked and grilled food) and organochlorine compounds (from pesticides and industrial processes) were subject to only a "modest" increase of 50 percent in the breast cancer rate. What Else? If this isn't mind-boggling enough for a reasonable person, there's more. Less-developed countries have a lower rate of breast cancer. One possible contributing factor is that women in poorer countries don't get screened for breast cancer as often and don't know they've got it. Another is that they have more children and breast-feed for longer. Recent reports extol the protective properties of breast-feeding. In fact a July 19 Washington Post article quoted Oxford University epidemiologist Valerie Beral as saying that "'it's really the number of children and the duration of breast-feeding that is the key to the differences between developed and developing countries in breast-cancer rates." Moving to a place with a lot of breast cancer risk factors substantially increases one's chance of getting the disease. Asian women who move to the United States increase their breast cancer risk by four to seven times--an 80 percent jump--according to a 1994 study of Chinese immigrants to New York. Despite much concentration on the hereditary link behind breast cancer, most cases develop without a family history of it. A 1988 study found that adopted children's likelihood of getting breast cancer increases when their adoptive parents have had it. This is explained by environmental circumstances as opposed to biology. The Northern California Cancer Center (NCCC), which operates a federally funded cancer data collection registry, echoes the Marin County Breast Cancer Watch's statement that Marin's higher risk for breast cancer is connected to its demographics. Marin County is heavily white (84 percent white, based on 2000 census data estimates), affluent and schooled (Marin's median income, according to the Census Bureau's Current Population Survey released in December, is $62,126). The women don't have as many kids, don't start having kids when they're very young and don't breast-feed throughout much of their life spans. This all adds up to more estrogen exposure, which apparently equals breast cancer risk. "We're basically monitoring what's happening in an affluent county when we look at Marin County," says Tina Clarke, Ph.D., an epidemiologist who works for the NCCC. "I worry that what's happening in Marin County is also happening in Palo Alto, Marin Heights" and other similarly populated areas. Since the government collects cancer data that's boiled down only as locally as counties, and not cities, the numbers for areas in California that share Marin's demographics may be buried. "It's not being in the Bay Area per se; it's being the type of person who's in the Bay Area," says Clarke. She sums up: "This shouldn't be seen as a regional issue. This should be looked at as a lifestyle issue." One theorized lifestyle risk is the binding unwire bra. There's a San Jose woman enviably named Chicki Downs, whom you probably won't meet if you've got two perfectly even and healthy breasts. Or if you're a dude. [See related story, p21]. She's an expert prosthesis and bra fitter, who thinks nothing of feeling up perfect strangers and helping find bras for people hard to fit. As someone who works closely with breasts, she's developed the theory that underwire bras contribute to breast cancer because they trap and segment the tissue at what she calls "crisis points." Perhaps one's bra and other lifestyle choices dictate breast cancer risk. And maybe, as Clarke says, the risk comes from what one does, not where one is--demographics, not geographics. This point puts us right back to where we started: Don't do anything. Beauty and the Breast: The author's mother and tiny little author My Mother, Myself "Great! I'm in every breast cancer risk group," I blurt out in unreporterlike fashion to Clarke, while she relists the have-kids-early-and-often, etc., list of breast-cancer-related lifestyle factors. "Everyone you know has all the risks," Clarke says calmly. "How many people do you know who have five kids by the time they're 19?" My mom didn't have five kids. I don't think she liked kids, generally. Too high-pitched. But she had one when she was 30 (the deadline for avoiding the no-kids-by-30 risk group). So she had that going for her. She breast-fed the kid--uh, me. She ate whole wheat bread and other healthy stuff and frowned upon "empty calories." She was not obese. She laid off the chemicals (no pore-clogging antiperspirant); she walked; she rarely drank alcohol. Why did my mom get cancer? I asked one of my mom's best friends, Anne Flitcraft. "I think she had bad luck," Annie told me. Annie's an M.D. She's the logical, scientific type. "It was so incongruous that she would be sick," Annie said, "because she was never sick." My position is that my mom could have lived longer if she'd wanted to. Here's my case. When she found out that her breast cancer had metastasized and taken over her bones, she knew she'd die soon. When the news hit, we had already planned to visit our family in Florida. She figured sticking to the plan would give her a chance to say goodbye to her dad and her sister. It also gave us a few days together while we drove from Connecticut in her recently purchased Alpha Romeo convertible, an 80-mph trip made even more fun by our jokes about how my mom had trouble actually convincing our family that she was really sick and really about to die. She was resigned to it; they were not. It seemed absurd to us that they were still recommending totally inappropriate treatments, such as preventive bone-marrow transplants. The dark humor was the best part. However, along the way, I got frustrated with my mom because she wouldn't eat. Of course, it was her prerogative. Nevertheless, I have always selfishly felt that she just gave up. "I think in many ways that she was not a happy person," Annie conceded during our hour-long phone conversation on a July Tuesday. Aha! I thought. Did that make her sick? No, it didn't. Annie doesn't think the will to live, or absence thereof, had anything to do with my mom's quick, young death. Again, Annie's a doctor. As it turns out, my question wasn't really about my mom, as Annie made clear. She explained my desire to know what killed my mom--what gave her cancer--by shrinking my head, despite her lack of a license to do that. "When someone that you love is sick or dies there's this awful sense of vulnerability," she said. "If bad things happen with no explanation then we have no control over our lives. If you can figure out what caused it then you have an explanation for it ." Annie continued, "Your perception was that she sort of didn't fight this disease. If I was told I had a month to live, I'm not sure I would have jumped into the convertible with my 17-year-old daughter for a road trip. It was sort of a grand 'Fuck you, life' kind of a thing." Treat It I brought my curiosity about my mom's sickness and death with me to a recent free seminar at the Health Library in Palo Alto's Stanford Shopping Center. The seminar, "When Breast Cancer Hits Home," part of a series held throughout May, focused on alternatives to conventional medicine. A Mountain View oncologist and an oncology nurse practitioner, Dr. William Buchholz and Jennifer Coleman, RN, NP, led the seminar. It interested me when Buchholz said that placebo studies show that a large percentage of people respond to fake pills, either by getting better or experiencing side effects. About 30 people, several wearing wigs, showed up to hear about nontraditional breast cancer treatments. I think I managed to piss off every one of them. This happened after the doctor's spiel about how powerful the mind is in directing health. The nurse then started talking about how it's good to juice and do yoga. So, I asked, since the mind, or the will, is mainly what controls health, why bother with yoga and juicing? I'm not sure which hit me first, the hissing sound from the roomful of ill people or the nearly tangible, bitter glare from the woman in back of me. "When you get cancer, are you going to say, 'Why bother?'" the doctor responded. When it was over, I slunk out, not entirely satisfied with my answer. My question wasn't about me; it was about my mom, I thought. But one thing I realized: the people who have cancer and are determined to outlive it, will do anything--and everything--to beat it. The attitude is not about being a victim--it's about being a warrior. I came away from that seminar with different information than I expected, but I learned something important that day. Beat It Whether it's the attitude adjustment or medical advances, there is some hope. On the brighter side, according to the NCCC, 86 percent of women with breast cancer now live five years, and 76 percent live 10 years past their diagnosis. In terms of life-extending treatment, some progress is being made. Julia Smith is one such person in this statistic. Smith, who used to work at Metro, is "a miracle" because she's outlived a once-grim prognosis. That's how she says her doctor, Alan Newman (brother of Randy "Short People" Newman), put it. Smith was diagnosed with breast cancer six years ago while she was pregnant with her third daughter. She was in France at the time, where the hospitals are a little different. "It doesn't matter what you're in for," she recalls of her French medical treatment, "you get a suppository." But suppositories were certainly the least of Smith's horrors. Doctors induced labor to allow for chemotherapy. After chemo, doctors told her she still must undergo a mastectomy. She returned to California and had a mastectomy at Stanford. "It changes how you feel about yourself," she says now from her East Bay home. "There aren't any women in magazines who look like me." Less than a year later, she was diagnosed with metastatic disease to the skeleton. In 1999, one of her vertebrae collapsed. "So, now I'm three inches shorter than I used to be," she adds matter-of-factly. She could hardly walk for the next several weeks. Her doctor prescribed morphine and Vicodin for the pain, but Smith found it impossible to take care of three young daughters under the constant haze of drugs, so she weaned herself from both. She also left Stanford and found a new doctor who encourages her. Altogether, she's had nine chemotherapy treatments, and her hair has fallen out three times. Doctors in France and at Stanford told her she was going to die. After all, they said, only one out of many dozens of people with her advanced stage cancer lives. "If one of those people is going to make it, by God, it's going to be me, or I'm going to die trying," she told herself. Now she's got a doctor she likes; the one who calls her a miracle. I asked Smith why she thinks she got cancer. And yes, she's thought about it. "I think it was the acute depression of living in France," she says. She lived in a small Breton town, where she didn't have friends or a telephone. "Mind has a whole lot to do with it," she says, referring to both sickness and recovery. (See related story by Julia Smith, p.22) What's the Story? As is the case with virtually all the information surrounding causes and treatment of breast cancer, a doctor disagrees with this experiential revelation. "There's absolutely no evidence for that," Dr. Frank Stockdale, a breast cancer specialist at Stanford, responds when I ask him about the role attitude plays in breast cancer survival. State of the Evidence editor Evans is more willing to entertain the mind-body connection. "I think having a good attitude and being positive and trying to keep your stress under control. ... I think that all works in a person's favor," she says. "But I am very much annoyed with people who blame that solely, because that says that if you don't have a good attitude it's your fault if you die. ... I think it's a crapshoot whether you make it or not." So, what do we really know? As noted in the beginning of this article in the "Don't do anything" section, plenty of indications suggest when it's likely one will develop breast cancer. Those I haven't mentioned yet include obesity (fat holds contaminants, and breasts are mostly fat) and, for some reason, "above-average height," according to the Centers for Disease Control's California Cancer Registry data. Risk increases with alcohol consumption and with age, too. But even with the seemingly endless list of potential links to breast cancer, there's no clear and isolated smoking gun. As Stanford's Stockdale puts it, "Plastic didn't exist 50 years ago, but breast cancer did." Ultimately, he adds, "The most common risk is just being a female. That poses the highest risk." To contact Allie Gottlieb: [email protected] Send a letter to the editor about this story . [ Silicon Valley | Metroactive Home | Archives ]