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Informed Activism : A breast cancer survivor group encourages women to take a role in deciding how to treat the disease.

October 16, 1992|DAVID COLKER | TIMES STAFF WRITER

The women in Ladies of Courage, a seven-member breast cancer survivor group in the Antelope Val ley, do not fit the ster eotype of activists. Most are homemakers, all are at least middle-age; and except for the "Crying Out for RU486 Investigation" buttons some of them wear, all dress sedately.

But these women, who believe that doctors are not sufficiently communicating with breast cancer patients, don't mind if they stir up a bit of controversy.

"One doctor told me personally that he didn't care for this kind of 'activism' going on with the women up here," said Jean Cummins, 64. "I told him we were only trying to help others be aware of their bodies, telling them they should get second opinions and ask questions."

Cummins, who looks the part of a kindly grandmother and is the wife of the first dentist in Palmdale, laughed heartily.

"I don't think anyone would really think of me as an activist. Maybe what I really am is part of the underground."

The Ladies of Courage this month is sponsoring its first public event this month, a series of seminars to promote breast cancer awareness. On Saturday\o7 , \f7 there will be an all-day workshop with Los Angeles-based family therapist and cancer survivor Ronnie Kaye. Later this month they will have free lectures on body image after breast surgery, legal issues and the politics of breast cancer.

The group is also sponsoring an alternative care workshop with writer Al Carter, who believes that a dietary regimen and "rebound exercise" done on a mini-trampoline will boost the immune system and ward off cancer.

The women in the group emphasize that they do not believe all local doctors are inadequately informed about the latest in cancer care or dismiss a patient's taking an active role in determining treatment. Indeed, several local physicians and the Antelope Valley Hospital Medical Center have helped fund the public seminars.

"There are doctors who do a good job," said Ruth Mendoza, who had the idea for Ladies of Courage, "but they might not have access to the kind of continuing education, the cutting edge treatments available in Los Angeles."

And Mendoza, 41, whose cancer was found and treated with a mastectomy in 1989, makes it clear that she believes the problems go beyond a treatment's not being state of the art.

"When my cancer was found, it was never suggested I get a second opinion," she said. "I was never given any real option but a mastectomy. I was never told just what the drugs I was told to take were doing to me."

Mendoza's conversion to an activist happened a year after her operation, when a nurse friend asked her why she was not getting follow-up examinations. "I thought I had been cured, and that was that," Mendoza said. "I started to wonder if I knew everything I should know."

Several other women in the group told similar stories.

"When I asked about getting a second opinion," Cummins said, "my doctor acted like I was annoying him, and he said, 'Well, you could see the doctor down the hall.' " That doctor was in the same practice.

Mendoza's uncertainty led to panic. Not knowing where to turn, she called the telephone operator and said, "I have cancer, and I don't know where to call." The operator referred her to the national information number, (800) FOR-CANCER at the National Cancer Institute, and Mendoza began to find out for herself about current treatments and options.

She believes that if she had been well-informed at the time her cancer was discovered, she would have had a lumpectomy instead of a mastectomy. She also would have chosen to have her treatments at one of the 24 hospitals recognized by the National Cancer Institute as comprehensive centers for cancer care, such as UCLA and USC in Los Angeles.

'I decided that never again would I just allow someone to set out a plan of treatment for me without me investigating everything," Mendoza said.

At the time she began her breast cancer education, Mendoza was attending an "After Breast Cancer" support group sponsored by the local American Cancer Society office. She shared the information she found with the other women in the group, and six of them joined her in forming Ladies of Courage.

Even after the new group was formed, they continued to attend the American Cancer Society meetings, although they convinced the Society to change the group's name to "About Breast Cancer" so that topics broader than after-care--such as the use of experimental drugs like the controversial RU486--could be discussed.

The turnout for the first Ladies of Courage seminar--which featured a talk by Susan Broemmer, manager of the Antelope Valley Hospital Medical Center's breast imaging department--was fewer than 30 women. Group members, who had distributed more than 7,000 brochures about the event, were disappointed.

"So many women think 'it can't happen to me,' that it was hard to get them to even take a brochure," Cummins said.

But several women who had never had cancer did come to get information.

"I saw a flyer at work," said Ella Montgomery of Little Rock, who works for the Air Force. "A woman at work had it, and I thought I should start finding out about self-exams and things like that."

The Ladies of Courage hope that word spreads and they have more attendance at the rest of their seminars. And they would especially like to see some professionals attend.

"Let your doctors know about this," Mendoza told those attending the first seminar. "Tell them that you came here and learned something tonight about the latest information. Education is never a bad thing."

WHERE AND WHEN

What: The Ladies of Courage Breast Cancer Support Workshop.

Location: Ramada Inn, 300 W. Palmdale Blvd., Palmdale.

Hours: 9 a.m. to 4 p.m. tomorrow.

Price: Registration fee is $10, including lunch.

Call: For information on the workshop and other programs sponsored by the group this month, call (805) 948-5895 or (805) 949-2346.

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