Working to find the causes and stop the epidemic

Winter 1999

In This Issue : 

County Backs MBCW Young Athlete's Cancer Shocks
Letter From The President  Guitar Sent From Heaven 
Living With Breast Cancer  Commonweal Founder To Speak 
Bye-Bye Pesticides Cluster Conference 
$500,000 Adolescent Study Donations 


Make Your Voice Heard

Come one, come all to an open community forum to voice your concerns, your suspicions, your knowledge and your suggestions about the reasons for Marin County's breast cancer epidemic.

Come Tuesday, Feb. 23, at 7 p.m., to the Marin County Board of Supervisors chambers in the Civic Center. Come get it all out in the open, and come hear what our neighbors have to say. 

County and state representatives interested in exploring why Marin County women are more likely than any other U.S. women to be diagnosed with breast cancer will say a few words to kick off the forum. Opening speakers include county Supervisor Hal Brown; Nancy Rubin, county director of Health and Human Services; Peggy Reynolds, chief of environmental epidemiology with the California Department of Health Services; and Georgie Farren, M.D., Marin Breast Cancer Watch's project director for our adolescent study.

But the evening is yours - our friends and neighbors. Come and be heard. It takes an entire community to solve a problem of this scope. Come Tuesday, Feb. 23, to help find the causes and stop the epidemic.


County Backs Marin Breast Cancer Watch

by Ronnie Cohen

The Marin County Board of Supervisors this fall threw its support behind Marin Breast Cancer Watch with a $5,000 check and a resolution honoring the group for working to uncover the causes of breast cancer. 

The board also resolved to come up with its own plan of action this year to contribute to community efforts to fight breast cancer.    "This is just the beginning of the county getting deeply involved in Marin Breast Cancer Watch," said Supervisor Hal Brown, who brought the issue to the board.  

Several of Brown's friends live with breast cancer. So for years, Brown, a supervisor since 1983, has wanted to find a way for the county to join the breast cancer battle. But in the fall, when Brown learned that his friend Andrea Fox - a 31-year-old upbeat Marin County planner who runs most days, competes in triathlons and looks like a health magazine model - was diagnosed with breast cancer, he felt compelled to act.  "It's so damn shocking that someone so healthy, so young, so happy, a runner, an athlete who watches her diet . . . It's just painful," Brown said. "It spurred us on, saying we've got to do something. " 

Nancy Rubin, who in September moved up from Los Angeles and took over as Marin County's director of Health and Human Services, also spurred on the board. Rubin places breast cancer high on her list of priorities. "During my research in preparation for my return to the Bay Area, I became increasingly aware of the issue of breast cancer in the Bay Area, and most specifically Marin," Rubin said. "My instinct tells me that there is a significant role for the local county health department. " The board of supervisors has charged Rubin with defining that role.

This month, Rubin will unveil to the board some concrete ways the county can begin to tackle breast cancer. Rubin would like to hire someone to work at first part-time and ultimately full-time on breast cancer from her department. Rubin has been talking to legislators and foundations that might provide funding for a community health survey, which would focus on an array of problems, including breast cancer. The survey would look at already identified risk factors but also would try to find common themes and patterns in individuals' lives. In addition, the survey would examine a series of environmental and socioeconomic issues. 

"I see incredible promise in doing a community health survey," said Rubin, who participated in one elsewhere. "If structured appropriately, we can begin to develop some very significant data unique to Marin so we can begin to analyze, and hopefully predict, trends in our community. " 

Rubin does not buy the conclusions of last year's Center for Disease Control (CDC) study, which tried to assuage the fears of Marin women by blaming lifestyle factors and an increased use of mammography for a higher-than-anywhere-on-the-planet breast cancer rate. "I don't believe that the study done by the CDC was thorough enough and home-based enough to provide real answers or comfort to those affected," Rubin said. 

On Feb. 23, Marin Breast Cancer Watch and the county together will host an open forum to solicit community members' suspicions and fears about the reasons for the breast cancer epidemic in Marin. 

Brown said the county also is considering putting together "a very large fund-raiser" for Marin Breast Cancer Watch within the next year or 15 months.


Young Athlete's Cancer Shocks

by Ronnie Cohen

At 31, Andrea Fox thought breast thought breastcancer could not touch her. But in the fall, during an annual gynecological examination, Fox's doctor found a lump. It turned out to be cancerous. Friends and family members still cannot understand how the Marin County land-use planner, a runner and a triathlete who took care with her diet and approached the world with a picture-perfect smile, could get cancer.

Fox's cancer so stunned Marin County Supervisor Hal Brown that it spurred him to action after years of thinking about ways the county could join the breast cancer fight. This fall, Brown enlisted the Board of Supervisors with a $5,000 donation to Marin Breast Cancer Watch and a pledge for more. 

Even after a lumpectomy, a second surgery to widen the clean margins and chemotherapy, which zapped her long blonde hair, it's hard to believe cancer had been growing in Fox's toned body. "This should not be happening to me," Fox said in her raspy voice, mirroring the feelings of Brown and her other colleagues and friends. "I think people felt more vulnerable. I think they thought if it could happen to me, it could happen to anyone." 

Now Fox knows it can. And does. 

She would like to reach out to other unsuspecting young women and warn them that they too could be living with cancer.  "I'd like to speak to young women who feel they're invincible," she said.  "That's where I was." 

So was a 29-year-old friend of Fox's.  Summer before last, they trained together for a triathlon.   Then, just a few weeks after Fox was diagnosed with breast cancer, her training buddy was diagnosed with leukemia.

A Marin County planner for eight years, Fox can't help but wonder about a connection between cancer and the environment.  But she's not pointing fingers.  Instead, she's hoping her friends, like county Supervisor Brown and state Assemblywoman Kerry Mazzoni, can shine a light on causes of the breast cancer epidemic.

Fox's friends have rallied around her, sending so many floral arrangements following her surgeries her San Rafael living room looked like a funeral parlor, lending their ears, their shoulders and in Brown's case, his special stuffed bunny with a red 49er hat.

Fox tried a breast cancer support group but prefers to run rather than sit.  Immediately after each of hre chemotherapy treatments, Fox took her mother jogging on the beach.  Now she is undergoing radiation treatments and looking for an active way to bond with others living with breast cancer.

"There's got tob a a group of upbeat, positive people," Fox said, "who want to go out and hike or run rather than sit around in a circle and cry."


Let's Act Together

by Francine Levien

I am excited to have the platform of our newsletter to express myself. I am aware that much of what I have to say might be considered depressing. However, there is an antidote to depression - ACTION. Because I have been a political activist most of my adult life, it came naturally to me, after being diagnosed with breast cancer three and one-half years ago, to question accepted explanations for why Marin County has the world's highest breast cancer rate.

Since my diagnosis, several studies have attempted to explain the frightening statistic. Foremost among the explanations: late or no child-bearing, early onset of menses and late menopause - all of which could lead to an excess of estrogen, now considered breast cancer's major culprit.

My experience with the hundreds of women I have met through the formation of Marin MARIN BREAST CANCER WATCH

With total community involvement and through an integrated approach of empirical and scientific methods, our mission is to explore, identify and reveal the reasons for Marin County's high incidence rate of breast cancer. We pledge our energy, expertise, influence and material wealth to identify breast cancer's causes, to work toward its eradication and to create a healthier environment for ourselves, our children and our grandchildren.

Board Members Francine Levien, President Mary Gould, Treasurer Flavia Belli Ann Hunter Louise Kuret Fern Orenstein Roni Peskin Mentzer Ginger Souders-Mason Newsletter Staff Ronnie Cohen, Editor Rosie Bloehm, Art Director Marin Breast Cancer Watch 25 Bellam Boulevard, Suite 145 San Rafael, CA 94109 (415) 256-9011 FAX (415) 256-9773

Guitar Sent From Heaven

by Ronnie Cohen

Pam Peterson has been playing classical guitar for more than 35 years and was thinking about going electric when she saw her dream guitar at a Roy Rogers and Norton Buffalo concert.

The Gibson epiphone guitar was raffled off as a Marin Breast Cancer Watch benefit during the October concert.

Peterson, a secretary who lives in Tiburon and has been yearning to play blues and rock `n roll, took one look at the 12-string guitar and decided it would be hers. As she filled out the raffle coupon, she told the man behind her that he need not consider winning the guitar; she would. Peterson had gone to the concert at the Marin JCC because she tries to catch Rogers' performances whenever she can. When she heard it was a Marin Breast Cancer Watch benefit, she thought of her mother, who died of breast cancer eight years ago.

"I don't think there was anybody there who wanted that guitar more than me," Peterson said. "It consumed me from my head to my toes.

" When Peterson was announced as the raffle winner, she threw her arms in the air and ran to the stage as though she had just won an Academy Award. As she left the stage, she met Gaynell Rogers, Roy Rogers' wife and Marin Breast Cancer Watch's public relations director.

"I lost my mother to breast cancer," Peterson told Gaynell Rogers, "and in some way I feel like she's giving me this guitar."

Roy and Gaynell Rogers arranged for Gibson to donate the guitar to Marin Breast Cancer Watch. The raffle raised $1,400.

Living With Breast Cancer

Let's Stop Breast Cancer Before It Attacks

by Mary Gould

I watched breast cancer kill my older sister. When Barbara was dying, I swore I would never go through chemotherapy and radiation. It was hell.

Seven years later, when I was 32 and about to start physical therapy school, my doctor found a lump. When another doctor told me it was breast cancer, all I could see were images of my 30-year-old sister dying. I didn't want to go through the cancer treatment just to die.

In 1984, I had a modified radical mastectomy. Dr. Silverstein, my surgeon, came into my room, beaming, after learning my lymph nodes were clean and announced: "Mary, you're cured."

I believed Dr. Silverstein at the time. But since then, I have learned there is no cure, no true escape from this devastating disease.

In 1990, a few years after getting married and settling in Ross, my husband and I decided we wanted to start a family. "With your history," my doctor advised me, "I don't think pregnancy is such a good idea. But talk to other doctors."

I saw an oncologist who said if she were me she would go ahead and get pregnant.

My son Michael was born in August 1991. The following month, my breastbone felt tender and sore. Fearing a recurrence, I went to my internist. He gave me a chest X-ray, examined my remaining breast and declared me healthy.

In the summer of 1992, after returning to work as a physical therapist at Marin General Hospital, I lost about 15 pounds in two months. I found a dime-sized lump under my collar bone and showed it to my co-workers and my husband. "It's nothing," everyone said.

I routinely would run up and down four flights of hospital steps. After just one flight, though, I was finding myself short of breath. I began taking the elevator more and more. One day, I walked up a slight grade with a friendwhile pushing Michael in a stroller at Samuel P. Taylor Park. My friend said: "You look like you're gasping for air."

In September 1992, I learned why I was having so much trouble breathing. My diagnosis - Stage IV metastatic breast cancer. The cancer had spread to my lungs and my bones.

My oncologist hung my CAT scan on a light table. "You see this," he said, pointing, "that shouldn't be there. You see this, that shouldn't be there." My husband sat calmly through the oncologist's seemingly endless list of cancer sites. I felt like I was being catapulted off a cliff. Again, I saw my sister, who died when her sons were 7 and 4 years old.

What would happen, I asked, if I had no treatment. "You would probably have only months to live," the doctor replied. "You must start chemotherapy tomorrow."

All the promises I had made about not having chemotherapy flew out the window. I decided I would do anything and everything to live. I had to for my son.

Thanks to anti-nausea medication, the chemotherapy was not as bad for me as it was for my sister. Nevertheless, I remember one night after a treatment, when my husband was cooking dinner, and I was sitting on the floor. "Mommy," my son demanded, "read me this book." He handed me Dr. Seuss' "Green Eggs and Ham." I got sick to my stomach, cried and laughed, all at the same time.

I told myself the chemo had to work and implored my body to please make it work. But I had my doubts.

I overheard a woman in front of me on a supermarket check-out line announce that her son had just been accepted into college. With tears in my eyes, I bolted out of the store, thinking I probably would not live to see my baby off to college.

Ironically, after vowing never to have chemotherapy, in April 1993, I opted for the maximum possible dosage - 10 times the conventional dose - as part of an autologous bone-marrow transplant.

I spent 18 days secluded, away from my toddler son, in Alta Bates Hospital, getting as much chemotherapy as anyone can tolerate and then having my own stem cells, which had been frozen, transplanted back into me.

A bone-marrow transplant is a very blunt instrument. It's medieval. It's like torching my body and building it back up.

It left me bald, sterile, with ringing in my ears, dry skin and a stripped libido. Even after all this, women die. Once you have breast cancer, there is no cure.

But I do allow myself to look forward to seeing my son go to college, and I look forward to the day he graduates. I allow myself to hope that I'll be here.

Now, six years after my recurrence, I am no longer in the fighting-for-my-life mode and have time to think about possible causes of breast cancer. Why would I, a fit long-distance swimmer, get cancer at 32? I am not satisfied with a physician friend's assessment that I have "bad genes."

I think my sister and my exposure to DDT, which my mother sprayed around our Orinda house, and my taking high-dosage birth-control pills to control heavy menstrual bleeding as a teenager, are more likely explanations for my cancer.

My younger sister, now 39, did not play in the DDT-contaminated yard. Still, her doctor has advised her to have a preventative double mastectomy and to take tamoxifen. Surely, we can do better than this to prevent breast cancer.

Sometimes friends ask why I work for Marin Breast Cancer Watch. In some way, my work is payback for how well I am today. I told myself that if I got through the treatments I would work toward finding the causes. Rather than hunt for a cure, we need to spend our energy trying to stop breast cancer before it attacks.

I also never want to lose my outrage that so many women have died and are dying from breast cancer. I have heard these women ask, "Why is breast cancer killing so many of us?" My work is a way of honoring these women.

Mostly, though, the work is hope for the future that some day women and their families will no longer have to live in fear of breast cancer.

"I have learned there is no cure, no true escape from this devastating disease."

Commonweal Founder To Speak

Michael Lerner, Commonweal president and one of the country's leading authorities on complementary cancer treatments, will discuss cancer and the environment for Marin Breast Cancer Watch in March.

Lerner will examine "Cancer - The Age of Extinctions and the Emerging Environmental Health - Movement" in his talk on Thursday, March 18 at 7 p.m. in Marin General Hospital's main conference room.

The San Francisco Chronicle called Lerner "a high point of the day", when he spoke at a recent day-long conference.

Bye-Bye Pesticides

by Virginia Souders-Mason

The County of Marin will use 75 percent less pesticides in five years. And, starting now, when county crews do spray toxic chemicals, they must post warning signs for four days before and four days after, under regulations the Board of Supervisors adopted last month.

Marin Beyond Pesticides Coalition, of which Marin Breast Cancer Watch was a founding member, spent 15 months working with the county to change its approach to controlling weeds and pests in county buildings, parks and on other county land.

The resulting ordinance immediately banned the county's use of the most dangerous pesticides, including Environmental Protection Agency Toxicity Class I pesticides and those suspected of causing cancer and reproductive harm. Under the ordinance, the county must stop using EPA Toxicity Class II pesticides this year.

By the year 2004, the county must reduce its remaining pesticide use by 75 percent, under the ordinance.

Instead of spraying, the county will mulch or mow its weeds and look for non-toxic methods of pest control.

The ordinance says the county must adopt an Integrated Pest Management Policy emphasizing non-toxic ways to control pests and weeds and must establish a county Integrated Pest Management commission comprised of members of the community, advocacy organizations and pest-management experts.

The ordinance regulates only County of Marin land. It does not control pesticide use on private, city, state or school property.

Marin Beyond Pesticides Coalition's next effort will be trying to stem the tide of pesticide use in our schools. Marin Beyond Pesticides Coalition consists of 30 member groups. They include businesses, homeowner associations, civic and environmental groups representing nearly 40,000 Marin County residents.

We want people to know you can still have Camelot without chemicals.

You can help by changing your own home pest-control and gardening practices and by calling your supervisor to congratulate him or her on passing the pesticide-reduction ordinance and to encourage setting aside appropriate funds to assure its success.

Cluster Conference Gives Hope by Francine Levien

Scientists and advocates alike pointed to the environment as the major cause of breast cancer during a Boston workshop I attended in December. The U.S. Public Health Service's Office on Women's Health sponsored the two-day conference on breast cancer clusters. Participants were divided between U.S. and Canadian advocates, including leaders on the Long Island and Cape Cod studies, and government and university scientists. Although some advocates expressed impatience with the scientists, advocates and scientists reached consensus that the environment is the primary cause of breast cancer, other cancers and other serious illnesses. Polluting agents discussed included pesticides, bovine growth hormone in dairy products, genetic engineering, electromagnetic frequencies or EMFs, military contamination and radiation. Radiation is the only acknowledged cause of breast cancer. Consensus also prevailed about the need to employ the "precautionary principle," which means - don't wait for unequivocal scientific proof to phase out carcinogens. By then, we may all be dead.

Workshop participants agreed we should continue the study of cancer clusters, although it is an imperfect science. Scientists called for new and innovative methods to uncover more about the breast cancer epidemic. Participants also stressed the importance of collaboration among grass-roots groups, scientists and community members at the beginning of cluster research. Attorney Jan Schlichtmann, hero of the non-fiction book and movie "A Civil Action," gave an impassioned and amusing talk. Schlichtmann's message: we must tell the truth about carcinogens regardless of the personal cost. Sandra Steingraber, Ph.D., author of "Living Downstream," and Suzanne Haynes, Ph.D. of the U.S. Public Health Service's Office on Women's Health, convened the conference. They will write a report on the workshop with recommendations for the Department of Health and Human Services. I came away from the conference energized and hopeful that there might yet be a future without a breast cancer epidemic for our daughters and granddaughters.

Thank You Volunteers

We honor these hard-working volunteers: Rosie Bloehm, who designed and laid out our newsletter and fliers. Ronnie Cohen, who did the word-crafting and creative thinking for the newsletter. Cheryl Fillinger, who typed, filed, clipped articles and sent letters to politicians. Gaynell Rogers, our public relations woman, who does the work of 16 normal people. Linda Watson, chairwoman of our mailing committee, who always sees that the mail goes through. Our entire board, whose devotion and energy makes this all possible. Won't you please join us? We need you. Call Louise Kuret, volunteer coordinator, at 479-6906, and sign up today. You can make a difference.

Keeping Abreast