From Secrecy to Support: How the Breast Cancer Patient Advocacy Movement Pulled the Disease Out of the Shadows

When Jane Perlmutter learned in 1985 that she had mucinous carcinoma in her right breast, what struck her most was the veil of secrecy surrounding the disease.

“I was diagnosed in my early 30s, and at that time, cancer was still the C-word that people whispered about,” Perlmutter says. “And the word ‘breast’ was rarely even published.”

While Perlmutter received treatment at Memorial Sloan Kettering Cancer Center (MSK) in New York City, she recalls, a volunteer from the American Cancer Society’s peer-to-peer support program, Reach to Recovery, came into her room. “She told me that she was a 17-year survivor, and that was so powerful to me,” Perlmutter says. “That was the first time I really believed that I could survive this, so after I finished my treatment, I felt as though I was chosen to get involved.”

In the 35 years since, Perlmutter has been heavily involved in cancer advocacy and said she owes her activity, in part, to those who laid the groundwork. The breast cancer patient advocacy movement officially got its start in the early 1950s, and in the past 70 years, the disease has morphed from a shameful secret to a prominent issue. Awareness has grown about the importance of early detection and treatment and the need for dedicated research and care programs. And breast is the cancer that garners the most funding through U.S. nonprofit organizations, reaping $460 million in donations in 2015 alone.

Over the decades, the money brought in through rising awareness has helped researchers identify a variety of types of breast cancer; move from a standard treatment of radical mastectomy to the possibility of lumpectomy; and add chemotherapy, hormonal medications, targeted drugs and immunotherapy to the list of available options.

Going Public

At its core, the breast cancer patient advocacy movement can be credited to a handful of brave women who first came forward with their stories, founding support groups and, eventually, political activism groups. Their goal: Raise awareness and money, and bring the patient experience into the conversation among scientists and clinicians to affect cancer culture, drug development, treatment options, Food and Drug Administration (FDA) regulations and more.

Terese Lasser was one of the first women to kick-start the movement when, in 1952, she went to MSK to have a malignant breast lump biopsied under general anesthesia. She awoke to find herself, in her words, “bound like a mummy in surgical gauze,” and learned that a radical mastectomy had been performed without her knowledge or verbal consent.

Emotionally devastated by the mastectomy, Lasser also became infuriated with the cavalier attitude of her male surgeon, who shrugged off her questions about prosthesis options and rehabilitation exercises. Turning her anguish into action, Lasser founded Reach to Recovery in 1953 to bring women with breast cancer together to address the needs that their surgeons did not view as important. In 1969, the program that would inspire Perlmutter to join the fight was incorporated into the American Cancer Society.

In the early days of breast cancer advocacy, the biggest obstacle was the lack of open discussion. Patients like Lasser cleared that hurdle, and public figures took the cause a step further. Child movie star Shirley Temple Black became the first woman to openly write about her experience with breast cancer in 1972 in a monthly women’s magazine, famously stating: “The doctor can make the incision; I’ll make the decision.”

In 1974, first lady Betty Ford shared news of her breast cancer diagnosis and radical mastectomy with the American public through a televised press conference; just three weeks later, Happy Rockefeller, the wife of Vice President Nelson Rockefeller, disclosed the discovery of a malignant lump in her own breast.

Patient and advocate Rose Kushner boosted the movement in 1975 by publishing “Breast Cancer: A Personal History and an Investigative Report.” In her book, Kushner took issue with radical mastectomies and with performing biopsy and mastectomy together instead of delaying treatment until a patient had time to consider her options.

That public discussion led to women learning more about self-examination and medical options, but real change in the doctor’s office came with the rise of female surgeons, including Dr. Susan Love and Dr. Janet Osuch.

“When I went into surgery, and even when I went to medical school, there were quotas for how many women they would take,” Love says. “When I finished, nobody would offer me a job because nobody wanted a woman, so I started my own practice. And the only patients they would send me were women with breast problems.”

In 1985, Dr. Bernie Fisher, a surgeon and pioneer in the breast cancer patient advocacy movement, published an article comparing total mastectomies with lumpectomies, a form of breast preservation. Through a randomized study of stage 1 and 2 breast tumors, Fisher found that lumpectomy was at least as effective as mastectomy in treating breast cancer in these patients. Although his findings were instrumental in giving women a choice, it was primarily female surgeons like Love and Osuch, whose practices were soon flooded with patients who had breast cancer looking for options, who made change possible.

“I started doing breast preservation as soon as Fisher published that article, and that was not what most male surgeons were doing,” Osuch says. “But that was part of what attracted women to my practice. They came from all over Michigan. Women brought something really special to the field of surgery because they tended to listen to their patients more.”

In 1986, the state of Michigan amended its Public Health Code to state that “a physician who is administering the primary treatment for breast cancer ... shall inform the patient, orally
and in writing, about alternative methods of treatment,” serving as just one example of how advocacy turned into action.

Power In Numbers

Good timing also helped drive breast cancer patient advocacy. In the early 1980s, two move- ments seemed to collide, setting the stage for women to organize around breast cancer like never before.

“When women were growing up, you were a good girl if you didn’t say anything if you didn’t challenge authority,” Osuch says. “You basically went along to get along — until the early ’80s, with the rise of the feminist movement and as women watched the
AIDS activists.”

The AIDS movement was one of the first disease-specific efforts to increase research and funding, sometimes using aggressive and “in-your-face” tactics, and women took note. In 1980, Nancy Brinker was watching as her sister Suzy died from breast cancer at the age of 36. “I can’t tell you what that did to me,” Brinker says. “It changed my world, my entire life.”

At the end of her life, Brinker’s sister made her promise to do everything in her power to end breast cancer, which led Brinker to launch the Susan G. Komen Breast Cancer Foundation — now simply known as Susan G. Komen, named after her sister — in 1982.

The creation of the organization, just two years before Brinker’s own breast cancer diagnosis, marked the first public effort to raise money specifically for breast cancer, tearing a page out of the AIDS playbook. Susan G. Komen’s Race for the Cure, which began in 1983, quickly became one of the world’s largest 5Ks dedicated to breast cancer awareness. Susan G. Komen itself has become the largest and most-funded nongovernmental breast cancer organization in the United States.

Besides playing a role in equating the color pink with breast cancer awareness and support, Susan G. Komen has raised and given away about $3 billion for research, as well as launched a community approach to detection and care. In addition to allocating $1 billion to fund
the careers of young scientists, many of whom are now the leaders of some of the best labs in the country, the organization funneled the other $2 billion directly into over 104 communities around the world, where Susan G. Komen teaches women about the disease, funds, detection, care and support programs, and helps people with any stage of breast cancer find and participate in clinical trials.

Advocate Involvement

The AIDS movement not only revealed the effectiveness of disease-specific efforts, but it also helped women realize they could have educated and informed conversations with scientists and surgeons, with the ultimate goal of influencing breast cancer policymaking.

In 1991, several advocacy groups formed the National Breast Cancer Coalition (NBCC), “a collaboration of activists, survivors, researchers, policymakers, grassroots groups and national organizations that have come together as disruptive innovators for social change.” The group’s mission is to link organizations across the country to give them a voice in government, laboratory and community decisions, and initiatives related to breast cancer.

“The NBCC was really instrumental in getting research funding, and they were the main movers in saying: ‘We played a key role in getting this funding, and we want a seat at the table to have an influence in how the research is done,’ ” Perlmutter says. “NBCC trained advocates so they understood enough of the science to be good contributors, and then researchers began to realize that we were smart, good people who had a different perspective to share, and they began to engage us in peer review and research.”

The involvement of advocates in research, she says, was a groundbreaking advance; for example, clinical trials designed purely from a scientist’s perspective can fail due to conditions or requirements that aren’t comfortable for patients, leading to low enrollment or nonadherence.

“Getting advocates involved early to tell scientists how patients are likely to react to a trial design will make a difference in how well the trial does,” Perlmutter says.

Efforts like these resulted in greater understanding of the value of patient engagement and encouraged its widespread use. Organizations that now operate with patients top-of-mind include the Patient-Centered Outcomes Research Institute (PCORI), which funds studies that
offer patients and caregivers the information they need to make important health care decisions, and the FDA’s Patient-Focused Drug Development program, defined on the FDA website as a “systematic approach to help ensure that patients’ experiences, perspectives, needs and priorities are captured and meaningfully incorporated into drug development and evaluation.”

Moving Forward

Over the course of 70 years, the coordinated breast cancer patient advocacy movement pulled the disease out of the shadows and into the spotlight, turning breast cancer into the most funded cancer in the country. So, what’s next?

“Breast cancer advocacy took breast cancer out of the closet, and it made people recognize that many cancer patients are basically cured when they are detected early,” Perlmutter says. “But metastatic breast cancer survivors feel as though they have not been represented. Most of the funding goes to early-stage breast cancer, but if you can prevent metastasis, you can make a bigger impact.”

When she learned in 2005 that she had stage 2a ductal carcinoma in situ, Dian “CJ” Corneliussen was initially impressed with the support she received. However, when her cancer metastasized to her lung a year later, her experience was radically different.

“When I was diagnosed with primary breast cancer, I was inundated with offers of support and friendship,” Corneliussen says. “When I metastasized a year later, I was told by my oncologist to expect death in two to three years and then told by the breast center staff — (the place where) I was diagnosed and frequently sought emotional support — to avoid the center and hide my diagnosis from other patients. It was all too depressing and would frighten other patients to learn that actually happened. There was no support, no one to talk to, and then I learned there was virtually no research about metastatic breast cancer.”

Corneliussen felt that the breast cancer movement pushed the concept that patients only experienced metastasis if they “did something wrong,” she says. Feeling isolated and alone, as well as shocked at the contrast between her two experiences, she decided to found METAvivor, a metastatic breast cancer research, support and awareness organization, in 2009.

According to METAvivor, although 30% of people who receive a diagnosis of early stage breast cancer will eventually experience metastasis, a minority of funds raised for breast cancer research are directed at disease that has spread.

“We’re trying to expand the culture of breast cancer,” Corneliussen says. “It isn’t just about your breast and whether you get to keep it or lose it. It’s about your life.”

The movement also has begun focusing more on young survivors and their issues related to fertility and sexuality that are unique to their age. And, there is also a growing understanding and awareness of survivorship or living with an inherited predisposition to breast cancer. Previvors who test positive for breast cancer-associated gene mutations are closely observed through regular screening so that any cancers will be detected early; they are also asked to consider preventive surgeries, such as the removal of their breasts, ovaries and fallopian tubes.

For more than 15 years, patients and previvors with these gene mutations have been able to turn to Facing Our Risk of Cancer Empowered (FORCE), the only national nonprofit organization dedicated to supporting them. The group includes resources for men, who can be affected by or pass down these inherited genes.

Finally, the issue of health equity and disparity in care is a major focus across the entire breast cancer patient advocacy network. More sisters networks focused specifically on Black and Hispanic patients with breast cancer have formed, and there is a push toward ensuring that advocates are compensated for their time, which would help make advocacy involvement, which has traditionally been volunteer based, more representative of the entire population.

For Brinker, addressing health equity is the next necessary step toward fulfilling the promise she made to her sister 40 years ago — and what led her recently to found the Promise Fund of Florida, with the goal of eliminating barriers to quality health care and creating a community- based continuum of care for all.

“I have committed the rest of whatever my life will be to get this done,” Brinker says. “At the end of the day, I honestly believe that sometimes, to be an advocate, you have to be a bit of a maverick and just go off and do what you think is the right thing to do.”

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