The Trailblazer Who Ensured Women With Breast Cancer Had a Choice

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Babette Rosmond. (Courtesy of Jim Stone via Wikipedia)

Today, it is not uncommon when a woman diagnosed with breast cancer writes about her experiences. Illness memoirs, hardly only about breast cancer, are now a popular genre.         

However, this was not always the case. When New York City-based writer Babette Rosmond published her book The Invisible Worm 50 years ago, it was a daring act of courage and a spot-on example of contemporary feminist activism. Rosmond’s book was a call to arms to all women with breast cancer, beseeching them to ask their doctors about treatment options instead of passively accepting a radical mastectomy. The Invisible Worm, which Rosmond published under the pseudonym Rosamond Campion, was the first of many feminist books on breast cancer. The book’s title came from the poem “The Sick Rose” by William Blake. Although Rosmond never said for sure, the invisible worm, presumably, was the cancer.

Who was Rosmond? As of 1972 she was a 55 year-old author of six novels and an editor at Seventeen magazine. A precocious writer, she published a short story in The New Yorker at age 17. When Rosmond found an olive sized lump in her left breast in February 1971, she knew two women who had undergone radical mastectomies, a decades-old operation in which surgeons removed the affected breast as well as the underarm lymph nodes and both chest wall muscles on the side of the cancer. “The nerves in the stump of the pectoral muscle are screaming,” one of the women told Rosmond, describing her almost constant pain.          

So Rosmond went looking for a surgeon who would only do a biopsy of the breast lump, not a whole operation if it turned out to be a small cancer intraoperatively. It wasn’t easy to find such a doctor. When the biopsy came back as cancer and Rosmond declined immediate radical surgery, the surgeon was livid—and patronizing.

“Now you are being a very silly and stubborn woman,” he told her. “You ask too many questions.”

When Rosmond said she wanted three weeks to explore her options, he played his trump card. “In three weeks,” he said, thoroughly exaggerating the risk of her disease, “you may be dead.”

Rosmond eventually went to the Cleveland Clinic and met with a surgeon, Barney Crile, who was doing smaller operations in certain instances. Eventually, Rosmond had a partial mastectomy (also known as a lumpectomy) that removed only the tumor and some surrounding tissue.

A writer writes and that’s what Rosmond did, first in an article in McCall’s magazine and then in The Invisible Worm in 1972. The book was funny, as Rosmond manages to weave her dog’s sex life and her love of the Beatles into the story of her cancer. But it was serious as well. A patient—especially a woman—questioning male surgeons was revolutionary for the time. After her book was published, Rosmond appeared on The Today Show with Barbara Walters and the David Susskind show, where she gamely took on a panel of physicians, even criticizing her own surgeon, Crile, for saying breasts were useless in older women.           

Susskind was so uncomfortable with Rosmond that at one point he called her “Mrs. Civilian” to remind viewers she was not a physician. But Rosmond had no interest in playing doctor—she just wanted women to know they had right to choose among options. The Invisible Worm, she stated, was not solely about a lumpectomy but rather personal choice.

I think what I did was the highest level of women’s liberation. 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.’

Babette Rosmond

Three other woman writers also penned important breast cancer memoirs soon after Rosmond. In 1975, journalist Rose Kushner published “Breast Cancer: A Personal History and Investigative Report,” the story of her own breast cancer and the results of her voluminous research into the treatment of the disease. Kushner eventually became America’s best-known breast cancer activist; her accomplishments included serving as the first layperson to review National Cancer Institute breast cancer grants and helping to abolish the so-called one-step procedure, in which doctors did an intraoperative breast cancer biopsy and proceeded immediately to radical mastectomy if the biopsy was positive.

In 1976, television journalist Betty Rollin published First, You Cry. Rollin’s book was pathbreaking in its discussion of her post-operative appearance, which she insisted on broaching with her surgeon. Such concerns, routine today, were dismissed as vain in the 1970s.

Finally, in 1980, writer and poet Audre Lorde published “The Cancer Journals.” In addition to discussing her distinctive experiences as a Black lesbian woman with breast cancer, Lorde frankly acknowledged the “sadness and the loss” of her breast, again a largely taboo topic to that point. Lorde also was highly critical of breast reconstruction, which she believed was a strategy designed to make women appealing to men, and that minimized the devastating impact of losing a breast.

These and other themes continue to characterize the many breast cancer memoirs that have been published in the last 40 years. But Rosmond’s was first, and her impact was enormous.           

“I think what I did was the highest level of women’s liberation,” she told a New York Times reporter. “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.’”

And what about Rosmond’s surgeon’s prediction that without a radical mastectomy she would die within three weeks? By 1985, conclusive studies showed that in early-stage breast cancer, radical mastectomy was never indicated and, in many cases, could safely be replaced by a lumpectomy.

Rosmond lived long enough to learn this. She died in 1997 at the age of 80.

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About

Barron H. Lerner, professor of medicine and population health at New York University Langone Health, is the author of five books on the history of medicine, including "The Breast Cancer Wars: Hope, Fear and the Pursuit of a Cure in Twentieth-Century America.” Find him on Twitter @barronlerner.