The Right to Choose Your Cancer Treatment

11/1/2016

Before there was Betty Ford, the outspoken first lady who brought breast cancer awareness to the wider public, there was Babette Rosmond, a diminutive New York City writer and editor who went public with her diagnosis of breast cancer 40 years ago, three and a half years before the first lady. If Mrs. Ford is remembered for her grace and honesty, we should remember Ms. Rosmond for her courage and persistence. What Ms. Rosmond demanded of her doctors — the right to choose her cancer treatment — is now the minimum that cancer patients deserve.

When Ms. Rosmond discovered an olive-size lump in her left breast in February 1971, she was 49, the author of six novels and an editor at Seventeen magazine.

It so happened that Ms. Rosmond had two friends with breast cancer, both of whom had experienced psychological and physical side effects from radical mastectomy, the extremely disfiguring operation routinely used by surgeons to treat the disease. The operation removed not only the cancerous breast, but the underarm lymph nodes and both chest wall muscles on the side of the cancer, leaving women with hollow chest walls and swollen arms. Moreover, the decision to perform the operation typically occurred during intraoperative biopsies, when women were under anesthesia and had no voice.

Ms. Rosmond would have none of this. She essentially bullied a surgeon into performing only the biopsy. When the tumor turned out to be cancerous, he told her she needed an urgent radical mastectomy.

Ms. Rosmond demurred, asking for three weeks to consider her options. The surgeon, who had never before encountered such resistance, called her a “very silly and stubborn woman.” Then he played his trump card. “In three weeks,” he said, “you may be dead.”

Fortunately for Ms. Rosmond, a few surgeons had begun to rebel against the one-step radical mastectomy. One was Dr. George Crile Jr., of the Cleveland Clinic, who had concluded that the radical mastectomy made no sense for smaller cancers localized to the breast, which were becoming increasingly commonplace because of better screening and awareness. His own studies suggested that a simple mastectomy that removed only the breast was as effective for such cancers. He also offered an option of a partial mastectomy — an early version of today’s lumpectomy — for women like Ms. Rosmond whose cancers were very small and localized. The point, Dr. Crile emphasized, was that no one had proved that more surgery was better.

Ms. Rosmond had a partial mastectomy and was very content with her choice. “To me, the breasts yield aesthetic pleasure,” she later wrote. Keeping them had been “useful and rewarding” to her and avoided the painful experiences of her friends. Dr. Crile told Ms. Rosmond that most women making this choice also had local radiation to prevent recurrences, but she declined.

As a journalist, Ms. Rosmond knew a good story, and she soon published “The Invisible Worm,” an account of her experiences, under the pen name Rosamond Campion. The book’s subtitle boldly announced her message: “A Woman’s Right to Choose an Alternate to Radical Surgery.”

Ms. Rosmond’s crusade for women’s rights very much fit with her times. Her book cam out in 1972, the height of “second wave” feminism and its campaign for the Equal Rights Amendment, which Mrs. Ford enthusiastically supported. For her part, Ms. Rosmond could not stand being patronized by male doctors, even though they obviously had enormous expertise. “I think what I did was the highest level of women’s liberation,” she told her readers. “I said ‘no’ to a group of doctors who told me, ‘You must sign this paper, you don’t have to know what it’s all about.’”

Ms. Rosmond briefly went on the talk show circuit, appearing on the “Today” show and “The David Susskind Show” with Dr. Crile as well as women who had undergone radical mastectomies and physicians who strongly supported aggressive surgery.

It is utterly commonplace now for patients to go on television and give medical advice. This was not the case in 1972. The doctors who appeared with Ms. Rosmond were genuinely alarmed that her advice would lead women to have inadequate operations and thus needlessly die from breast cancer. Even David Susskind called her “Mrs. Civilian” at one point.

For her part, Ms. Rosmond clearly enjoyed the attention, wearing a Cheshire Cat smile and interrupting the doctors. Yet the careful listener — and reader of her book — realized that she never told women to have the operation that she did. She just wanted them to learn about their options and make their own choices.

Definitive studies published by a University of Pittsburgh surgeon, Dr. Bernard Fisher, in The New England Journal of Medicine in 1985 showed that for early-stage breast cancers, survival was no different for radical mastectomies, simple mastectomies or what he called segmental mastectomies. Women with breast cancer today actively choose among these more limited operations, along with the options of radiation and chemotherapy.

Ms. Rosmond died in 1997 at age 75. Her breast cancer never recurred.