A new survey from Health Union supports the need for more resources that meet the specific challenges of people living with advanced stages of breast cancer who are more likely than the broader breast cancer population to experience low quality of life. The survey, titled Advanced Breast Cancer In America 2019, illuminates the perspectives and experiences of patients and caregivers impacted by stage 3 and stage 4 breast cancer. The findings further support the launch of AdvancedBreastCancer.net, Health Union's 20th chronic condition-specific online community.
Compared to people in early stages of breast cancer, those with advanced breast cancer experience a metastasis, or spreading, of the cancer to other parts of the body, often quickly. In the survey, 93% of respondents reported their breast cancer had metastasized. Nearly half said their cancer had spread to the bone, and nearly a quarter said it spread to their lungs.
The uncomfortable reality is that, according to statistics from the American Society of Clinical Oncology, the five-year survival rate for women with metastatic breast cancer is 27%, compared to the average 90% survival rate for all women with breast cancer. As a result, treating quickly and effectively is pivotal to managing the condition. Seven in 10 survey respondents underwent their first treatment or surgery within a month of diagnosis. Since diagnosis, three-quarters have had chemotherapy, seven in 10 have had surgery and 57% have had radiation therapy.
However, only half of respondents said they feel their condition is controlled on their current treatment plan. Perhaps related, a majority of respondents are interested in more information about future treatments, with nine in 10 aware of at least one branded therapy and more than two-thirds with active advanced breast cancer interested in clinical trial participation. Respondents also said that, when seeking information about breast cancer, new treatments are at the top of their list.
The survey also reveals that an advanced breast cancer diagnosis can have a significantly negative impact on quality of life. Only a third of respondents said they are currently at least "quite a bit" content with their quality of life, and two-thirds are at least somewhat worried about their advanced breast cancer worsening. That being said, nearly eight in 10 said their attitude plays a significant factor in their quality of life, and 60% said they aren't going to let breast cancer stop them from making long-term plans.
"It is amazing to see that the landscape and narrative around metastatic breast cancer is changing when resources are being developed for a community no longer living and dying in the shadows of this disease," said AdvancedBreastCancer.net patient advocate Rebecca Timlin-Scalera. "AdvancedBreastCancer.net is a place where people can go to feel understood, share experiences and take solace in knowing they are not alone."
After their healthcare professionals, respondents identified internet search and breast cancer-specific websites as the top resources they use - both at around 50% - to learn or manage their breast cancer. Addressing this population's proclivity for seeking relevant information online, AdvancedBreastCancer.net provides a community where an often misunderstood group of individuals can find information, connection and validation.
"We found – and the results of Advanced Breast Cancer In America 2019 confirmed – the advanced breast cancer community is small but has sizable needs and experiences that are often overlooked or misunderstood," said Tim Armand, co-founder and president of Health Union. "Continuing our mission to provide safe, supportive environment for people with chronic health concerns, AdvancedBreastCancer.net will give individuals, including those whose cancer has metastasized, an opportunity to connect with and learn from others with similar experiences."
Advanced Breast Cancer In America 2019 surveyed 403 U.S. respondents living with advanced stage breast cancer from Sept. 17, 2018 to Jan. 25, 2019. A summary infographic of the results is available on AdvancedBreastCancer.net; additional survey results may be available upon request.
About Health Union
Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection and validation they seek. The company creates condition-specific online communities - publishing original, daily content and continuously cultivating social conversation - to support, educate and connect millions of people with challenging, chronic health concerns. Today, the Health Union family of brands includes 21 online health communities, including ParkinsonsDisease.net, MultipleSclerosis.net, Blood-Cancer.com and Type2Diabetes.com.
Survey: people with advanced breast cancer have lower quality of life, low confidence in treatment. Appl Rad Oncol.