June 2013 - 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.
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.
Key members of the global advocacy community collaborated with Novartis Oncology to offer resources, support and education tailored to the ABC community on www.advancedbreastcancercommunity.org.
“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.”
The website includes detailed information about the survey by country. Additional Count Us survey findings include:
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.
- More than half of employed women (57%) say most or all of their co-workers 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.
If you or a loved one have been impacted by advanced breast cancer, you are encouraged to visit www.advancedbreastcancercommunity.org to be counted and learn more about the survey results.