The survey by Novartis Oncology involved 1,273 women from 12 countries worldwide
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. 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 metastasises or if they are first diagnosed with metastatic breast cancer, it is no longer about becoming a survivor; it’s about surviving,” she says.
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 metastasises, the focus shifts to surviving. The survey showed that these patients crave resources and support that are specific to their needs.
The global survey also found that more than three in four women (77 per cent) say they actively seek out information on their own; however, nearly half (45 per cent) say it is hard to find information about ABC, and more than half (55 per cent) say the information that is available does not address their needs. In addition to lack of information and feelings of isolation, many women (41 per cent) 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 per cent) 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, a nonprofit advanced breast cancer organisation.
Along with key members of the global advocacy community, Novartis Oncology has created resources, support and education tailored to the ABC community through an online website called advancedbreastcancercommunity.org. The website will serve as 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 organisations, periodicals and medical journals that focus on the advanced forms of breast cancer.
EH News Bureau