This October, Pfizer Inc. is uniting with leaders in the breast cancer community in a public call-to-action to expand the breast cancer dialogue to include metastatic breast cancer. This comes after a first-of-its-kind survey commissioned by Pfizer revealed that many people know little to nothing about metastatic breast cancer the most advanced stage of breast cancer (Stage IV), in which cancer has spread beyond the breast to other organs in the body.

“With the public breast cancer conversation focussed primarily on early detection and survivorship, metastatic patients often feel misunderstood and isolated from the larger breast cancer community,” said Shirley Mertz, president, Metastatic Breast Cancer Network (mbcn.org). “In fact, we need support and encouragement to face the significant mental demands of a disease for which we will always be in treatment. It will take commitment, attention and resources from multiple parties to change the environment, but the time is now to begin the next phase of the breast cancer movement, where all people living with breast cancer the early, the advanced and the metastatic feel equally embraced.”

Together with an external steering committee comprised of patient advocates, healthcare professionals and academic linguists, Pfizer has undertaken the Breast Cancer: A Story Half Told initiative to inspire change based on two complementary studies that have uncovered gaps in the breast cancer conversation within society at large and between patients and physicians in the doctor’s office.

“Metastatic breast cancer is a diagnosis that can come with complicated treatment decisions,” said Freda Lewis-Hall, M.D., chief medical officer at Pfizer. “Furthermore, the emotional toll of metastatic disease can be profound, and can affect how people feel about themselves, communicate with others, and live their lives. Along with our partners, we believe that we can do more to educate about the current gaps in conversations about metastatic breast cancer and help empower those living with the disease to play a more active role in understanding their prognosis and their options for treatment.”

In order to understand some of the external challenges facing metastatic breast cancer patients, a first-of-its-kind survey assessed breast cancer knowledge in 2,090 men and women in the US, aged 18 or older, who were representative of the US population across various socioeconomic, geographic, educational and ethnic backgrounds.

More than 60 per cent of respondents said they know little to nothing about metastatic breast cancer. This lack of knowledge about metastatic disease was apparent in additional findings, which revealed the following facts were not well understood:

FACT: Early diagnosis does not guarantee survival 72 per cent of respondents thought that breast cancer in the advanced stages can be cured as long as it is diagnosed early.3 The reality is that even if diagnosed early, nearly 30 per cent of women diagnosed with early breast cancer will progress to metastatic disease.

FACT: Breast cancer progression can occur regardless of treatment or preventative measures taken Half of people surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventative measures, signaling the potential stigmatisation of people with metastatic disease. In reality, breast cancer can spread quickly and inexplicably, regardless of treatment or preventative measures taken.

FACT: Prognosis of advanced disease remains poor and treatment options may be limited Half of the survey respondents said they believe that a significant number of treatments are available for advanced breast cancer, and 41 per cent said they believe that people with advanced breast cancer can live a long time. The reality is, while there have been advances in therapy, metastatic breast cancer currently remains incurable. The median survival following a metastatic breast cancer diagnosis is just three years.

This study was conducted to observe the interactions between metastatic breast cancer patients and their community-based oncologists in the physician’s office following a metastatic breast cancer diagnosis. In total, seven US oncologists and 22 women with metastatic breast cancer participated.

The study revealed significant gaps in patient and physician conversations and yielded three primary findings:

Patients discussing their prognosis and treatment options in the doctor’s office were not active participants in the conversation. This may suggest a need for tools or education that can lead to more detailed and productive conversations.

When talking to patients still learning about their metastatic disease, oncologists often use vague or overly technical language, which may hinder meaningful discussion.

The severity of metastatic disease tends to be minimised by physicians, and prognostic information was unclear to patients.

Taken together, the results of the national survey and in-office study underscore the need to increase the understanding of metastatic disease within society at large, while empowering metastatic breast cancer patients to have a clear voice in conversations about their breast cancer experience in the doctor’s office and beyond. The full call-to-action, which includes specific recommendations from the steering committee on how this can be accomplished, and other information about breast cancer: