Largest-ever global survey of 1,273 women in 12 countries reveals women with advanced breast cancer feel left out of the breast cancer movement

 

A new global survey sponsored by Novartis Oncology of nearly 1,300 women in 12 countries finds that despite breast cancer being the most common cancer in women worldwide, women living with advanced or metastatic breast cancer feel isolated and left out of the broader breast cancer movement. The global “Count Us, Know Us, Join Us” (Count Us) survey shows that nearly two-thirds of women with advanced breast cancer (ABC) feel like no one understands what they are going through. In fact, four of 10 women surveyed feel isolated from the broader breast cancer awareness movement, which focuses primarily on early detection, prevention, and possible cure.

“When first diagnosed with breast cancer, women are instantly part of a vibrant breast cancer support community,” said Maira Caleffi , MD, President of Brazilian Federation of Philanthropic Institutions to Support Breast Health (FEMAMA). “But when their cancer metastasizes or if they are first diagnosed with metastatic breast cancer, it is no longer about becoming a survivor; it's about surviving.”

In early stage breast cancer (stages I and II), cancer cells are confined to the breast or immediate lymph node area; the focus for the patient is to become a “survivor.” When cancer metastasizes, treatments that worked at the beginning may lose effectiveness over time. The focus shifts to surviving, despite the anxiety and uncertainty that comes with disease progression and ongoing treatments. The survey showed that these patients crave resources and support that are specific to their needs.

Along with key members of the global advocacy community, Novartis Oncology has created resources, support, and education tailored to the ABC community on the newly launched www.advancedbreastcancercommunity.org. The website is a hub of resources for people living with ABC as well as their caregivers, supporters and loved ones. Such resources include a step-by-step guide to creating a personal plan after being diagnosed, videos that offer first-person accounts of life with ABC and lists of advocacy organizations, periodicals, and medical journals that focus on the advanced forms of breast cancer.

The global survey also found that more than three in four women (77%) say they actively seek out information on their own; however, nearly half (45%) say it is hard to find information about ABC, and more than half (55%) say the information that is available does not address their needs. This is likely because most of the information available is applicable only to those with early stage breast cancer.

In addition to lack of information and feelings of isolation, many women (41%) find that support from friends and family wanes over time. Interestingly, all of this may motivate some women to create their own support networks. Nearly half of women (45%) say that being diagnosed with ABC has led them to volunteer or give back to the ABC community.

“These survey results give great insight into our global community and the reality of living with metastatic breast cancer, an incurable and deadly disease,” said CJ ( Dian) M. Corneliussen-James , Director of Advocacy for METAvivor Research and Support, Inc., a nonprofit advanced breast cancer organization. “It is my hope that this ignites a movement of public recognition, understanding and outreach so that the isolation and rejection our community so often encounters might become a thing of the past.”

Additional Count Us Survey findings:

Support and Information from Healthcare Providers:

  • Most women (80%) say they get enough support from their oncologists.
  • Three in four women (76%) would like their healthcare professional to address their emotional needs.
  • One in three women (35%) say it is important to make information about decreased interest in sexual activity available to women with ABC.

Relationships and Marriage:

  • Two in five women (40%) say their relationship with their spouse or partner has been negatively impacted a lot or a moderate amount by their ABC diagnosis.
  • However, nearly all women (87%) say they receive sufficient support from their spouse/partner.
  • Many women (41%) find that support from friends and family wanes over time.

Workplace:

  • More than half of employed women (57%) say most or all of their coworkers know about their ABC.
  • About seven in ten women (69%) say their ABC has interfered with their ability to work such that they suffered a loss of personal income.