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[2].

“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[5]. The focus shifts to surviving, despite the anxiety and uncertainty that comes with disease progression and ongoing treatments[6]. 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[2]. 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[2]. 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[2].

“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.”

About the “Count Us, Know Us, Join Us” Survey

The Count Us survey was conducted online by Harris Interactive on behalf of Novartis Oncology between October 8, 2012 and March 15, 2013. A total of 1,273 women diagnosed with ABC (that is, breast cancer that has spread beyond the breast to other parts of the body) completed the survey in 12 countries: US (n=349), Canada (n=55), Mexico (n=102), Brazil (n= 100), Argentina (n=100), UK (n=66), Germany (n=100), Russia (n=100), India (n=100), Taiwan (n=99), Hong Kong (n=52) and Lebanon (n=50). Total sample data are not weighted and therefore representative only of the individuals interviewed. A global post-weight was applied to ensure all countries received an equal weight in the global and regional data. No estimates of error can be computed.

Additional Count Us Survey findings:

Support and Information from Healthcare Providers:

• Most women (80%) say they get enough support from their oncologists[2].
• Three in four women (76%) would like their healthcare professional to address their emotional needs[2].
• One in three women (35%) say it is important to make information about decreased interest in sexual activity available to women with ABC[2].

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[2].
• However, nearly all women (87%) say they receive sufficient support from their spouse/partner[2].
• Many women (41%) find that support from friends and family wanes over time[2].

Workplace:

• More than half of employed women (57%) say most or all of their co-workers know about their ABC[2].
• 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[2].

About Count Us, Know Us, Join Us

The mission of Count Us, Know Us, Join Us is to recognize those living with ABC, their caregivers, supporters, friends and family members. This is a community that has different physical and emotional needs from those living with early stage breast cancer. Novartis Oncology has collaborated with leading members of the global advocacy community to create the program and corresponding website – www.advancedbreastcancercommunity.org.

About advanced breast cancer

Advanced breast cancer comprises metastatic breast cancer (stage IV) and locally advanced breast cancer (stage III)[7]. Metastatic breast cancer is the most serious form of the disease and occurs when the cancer has spread beyond the breast to other parts of the body, such as the brain, bones or liver[7]. Locally advanced breast cancer occurs when the cancer has spread to lymph nodes and/or other tissue in the area of the breast, but not to distant sites in the body[7].

References

1. Breast Cancer Awareness Month in October. World Health Organization. Available at http://www.who.int/cancer/events/breast_cancer_month/en/index.html. Accessed on March 15, 2012.
2. Count Us, Know Us, Join Us Advanced Breast Cancer Survey, Harris Interactive, sponsored by Novartis Oncology (2013).
3. Buckley N, Isherwood A. Breast Cancer. Decision Resources. March 2011:1-301.
4. Forouzanfar MH, Foreman KJ, Delossantos AM, et a;. Breast and cervical cancer in 187 countries between 1980 and 2010: a systematic analysis. Lancet. October 2011;378(9801):1461-84.
5. Gonzalez-Angulo AM, Morales-Vasquez F, Hortobagyi GN. Overview of Resistance to Systemic Therapy in Patients with Breast Cancer. In: Madame Curie Bioscience Database [Internet]. Austin (TX): Landes Bioscience; 2000-. Available at http://www.ncbi.nlm.nih.gov/books/NBK6306. Accessed on March 15, 2013.
6. MBC Advocacy Working Group. Bridging gaps, expanding outreach: Metastatic Breast Cancer Advocacy Working Group consensus report. The Breast. 2009; 18:273-5.
7. American Cancer Society. How do you determine the stage of breast cancer? Available at http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-staging. Accessed on October 9, 2012.