During a talk last spring in San Francisco, Dr. Susan Love, the well-known breast cancer book author and patient advocate, chided the research establishment for ignoring the needs of people with cancer. “The only difference between a researcher and a patient is a diagnosis,” she told the crowd. “We’re all patients.”
It was an eerily prescient lecture. Less than two months later, Dr. Love was given a diagnosis of acute myelogenous leukemia. She had no obvious symptoms and learned of her disease only after a checkup and routine blood work.
“Little did I know I was talking about myself,” she said in an interview. “It was really out of the blue. I was feeling fine. I ran five miles the day before.”
Dr. Love, a surgeon, is best known as the author of the top-selling “Dr. Susan Love’s Breast Book” (Da Capo Press, 2010) now in its fifth edition. She is also president of the Dr. Susan Love Research Foundation, which focuses on breast cancer prevention and research into eradicating the disease. But after decades of tireless advocacy on behalf of women with breast cancer, Dr. Love found herself in an unfamiliar role with an unfamiliar disease.
“There is a sense of shock when it happens to you,” she said. “In some ways I would have been less shocked if I got breast cancer because it’s so common, but getting leukemia was a world I didn’t know. Even when you’re a physician, when you get shocking news like this you sort of forget everything you know and are scared the same as everybody else.”
Because Dr. Love’s disease was caught early, she had a little time to seek second opinions and choose her medical team. She chose City of Hope in Duarte, Calif., because of its extensive experience in bone marrow transplants. At 65, Dr. Love was startled to learn she was considered among the “elderly” patients for this type of leukemia.
She was admitted to the hospital and underwent chemotherapy. Because her blood counts did not rebound after the treatment, her stay lasted a grueling seven weeks.
She went home for just two weeks, and then returned to the hospital for a bone-marrow transplant, with marrow donated by her younger sister, Elizabeth Love De Graci, 53, who lives in Mexico City.
Although the transplant itself was uneventful, the next four weeks were an ordeal. Dr. Love developed pain and neuropathy from the chemotherapy drugs. Dr. Love’s wife, Dr. Helen Cooksey; daughter, Katie Love-Cooksey, 24; and siblings offered round-the-clock support. Ms. Love-Cooksey slept in the hospital every night. “I wasn’t very articulate during that time, but I always had my family there,” Dr. Love said. “They were great advocates for me.”
The transplant “is quite an amazing thing,” Dr. Love said. Her blood type changed from O positive to B positive, the same type as her sister. She also has inherited her sister’s immune system, and a lifelong allergy to nickel has disappeared. “I can wear cheap jewelry now,” she said. She returned to work last month.
Dr. Love has been told her disease is in remission, though her immune system remains compromised and she is more susceptible to infection. So she avoids crowds, air travel and other potential sources of cold and flu viruses.
While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.
“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”
Dr. Love says her experience has emboldened her in her quest to focus on the causes of disease rather than new drugs to treat it.
“I think I’m more impatient now and in more of a hurry,” she said. “I’ve been reminded that you don’t know how long you have. There are women being diagnosed every day. We don’t have the luxury to sit around and come up with a new marketing scheme. We have to get rid of this disease, and there is no reason we can’t do it.”
People who remain skeptical about the ability to eradicate breast cancer should look to the history of cervical cancer, she said. Decades ago, a woman with an abnormal Pap smear would be advised to undergo hysterectomy. Now a vaccine exists that can protect women from the infection that causes most cervical cancers.
“We need to focus more on the cause of breast cancer,” she said. “I’m still very impressed with the fact that cancer of the cervix went from being a disease that robbed women of their fertility, if not their lives, to having a vaccine to prevent it.”
Dr. Love, who wrote a book called “Live a Little!,” said illness has also made her grateful that she didn’t put off her “bucket list” and that she has traveled the world and focused on work she finds challenging and satisfying.
“It just reminds you that none of us are going to get out of here alive, and we don’t know how much time we have,” she said. “I say this to my daughter, whether it’s changing the world or having a good time, that we should do what we want to do. I drink the expensive wine now.”
