Dr. Carolyn M. Kaelin, a breast cancer surgeon who continued her research and advocacy for patients after her own diagnosis of breast cancer ended her surgical career, died on July 28 at her home in Charlestown, Mass. She was 54.
The cause was a brain tumor, not related to her breast cancer, said her husband, Dr. William G. Kaelin Jr., a cancer researcher and a professor at Harvard Medical School. She learned she had the tumor in 2010.
Dr. Kaelin was 34 in 1995 when she became the founding director of the Comprehensive Breast Health Center at Brigham and Women’s Hospital in Boston. She was the youngest woman ever chosen for such a high-ranking post at any major teaching hospital affiliated with Harvard.
“I was quite taken with her enthusiasm and patient-centeredness,” said Dr. Michael Zinner, the chief of surgery at Brigham and Women’s Hospital, who hired her.
Dr. Zinner quickly realized that he had made the right choice.
“When I would refer patients to her, they would fall in love with her — her warmth, her feeling, her feedback,” he said in an interview. “They would say they got calls back from her at 10 at night. She would put her kids to bed and was still thinking about patients.”
Dr. Kaelin helped to begin a new era. More women were becoming surgeons when she trained, but the field was still something of a male bastion and, her husband said, it took grit for a woman to break in. Blatantly sexist remarks were becoming less common, but more insidious slights persisted, like senior physicians’ introducing male interns to patients as “Doctor” but female ones by their first names.
Medicine was changing, too. Breast cancer surgery was a relatively new specialty, born of a growing recognition of the complexity of the disease and the various operations used to treat it. It appealed to Dr. Kaelin in part because, unlike many other types of surgery, it would give her a chance to form long-term relationships with her patients, her husband said.
Women with breast cancer were beginning to speak up about their wishes, Dr. Zinner said, and some preferred female surgeons. In addition to running the breast health center, Dr. Kaelin performed surgery and did research on breast cancer patients’ quality of life during and after treatment. She was especially interested in the role exercise could play in recovery.
In 2003, Dr. Kaelin noticed a tiny abnormality in one of her breasts. It turned out to be a sign of cancer. Several lumpectomy operations failed to remove the entire tumor, and she finally had a mastectomy, followed by chemotherapy and radiation.
Her striking long hair fell out. Worst of all, she lost sensation in her hands. The surgical career she loved, and for which she had trained for so many years, was over.
“I think it would have been very easy for her to get depressed, to go into a tailspin, but that wasn’t her nature,” her husband said.
Instead, she spent time with her two children, developed educational programs and conferences for breast cancer patients and their families, helped raise money to treat indigent cancer patients, and wrote two books, “Living Through Breast Cancer” (with Francesca Coltrera) and “The Breast Cancer Survivor’s Fitness Plan” (with Ms. Coltrera, Josie Gardiner and Joy Prouty).
She also helped start research that found rowing could help relieve lymphedema, the painful swelling in the arms that affects many women after breast cancer surgery. In addition, she helped create an exercise-centered breast cancer recovery program for the Y.M.C.A.
In 2010, Dr. Kaelin found she was having difficulty typing. A brain scan led to a devastating diagnosis: glioblastoma, the deadliest of brain tumors.
She had the standard surgery, radiation and chemotherapy. But at the same time, her husband said, researchers at cancer centers around the country tried to help, “to see if we could pull a rabbit out of a hat.” They tested drugs against her cancer cells and sequenced the tumor’s entire genome in hopes of finding mutations that would be targets for yet other drugs.
“All these doctors and scientists self-assembled into a virtual dream team that was trying everything,” Dr. William Kaelin said.
The scientists’ efforts pointed to several experimental drugs, which Dr. Kaelin tried. She survived four and a half years, considerably longer than most people with glioblastoma — although her husband said he could not be sure that the experimental drugs helped.
Dr. Kaelin had two brain operations and needed extensive therapy after each one to be able to walk again. But, her husband said, she continued to enjoy her life. “We traveled and had fun,” he said. Dr. Kaelin saw her daughter, Kathryn, graduate from Yale, and her son, William, known as Tripp, from high school.
Dr. Kaelin was born Carolyn Mary Scerbo on April 4, 1961, in Syracuse, and grew up in Franklin Lakes, N.J. Her father, Richard Scerbo, worked in pharmaceutical advertising, and her mother, the former Mary Zebrowski, was a teacher and interior designer.
Dr. Kaelin graduated from Smith College, where she majored in economics and biochemistry, and earned her medical degree at the Johns Hopkins School of Medicine. She also earned a master’s degree from the Harvard School of Public Health. In addition to her husband and her children, she is survived by her parents and her brother, Richard Scerbo.
Dr. William Kaelin said that when his wife was 7, her father took her to a pool and let her swim in the shallow end. But she saw older children jumping off the diving board into the deep end, and she wanted to do the same. Told she would have to take a swimming test first, she marched up to a lifeguard, took the test and passed — and jumped right into the deep end.
“I think many of the things she did through her life were variations on that story,” he said.
A picture caption on Monday with an obituary of the breast cancer surgeon Dr. Carolyn M. Kaelin referred incompletely to the source of the photograph of Dr. Kaelin. While it was supplied by the Dana-Farber Cancer Institute, it was taken by Steve Marsel. The caption also referred incorrectly to the date of the picture. It was taken in 2007; it was not undated.