TNBC Aware: Raising the Voices of Those Left Behind — LBBC’s Triple-Negative Needs Assessment

March 3, 2015

LBBC’s Senior Director of Programs and Partnerships, Janine E. Guglielmino, MA, concludes our TNBC Aware series with this post about LBBC’s survey findings and the needs of women diagnosed with triple-negative breast cancer.

One morning several years ago, an LBBC colleague rapped on my office door. She was distressed. She had just spoken to a woman with triple-negative breast cancer, a term we had only recently started using after it appeared in scientific journals.

The caller was crying, despondent. She had gone online to learn more about her diagnosis, which websites described as “rare,” “aggressive,” and “difficult to treat.” Someone she trusted had asked her why she couldn’t “just take one of those drugs I keep hearing about on the news.” Why, the caller pressed, does it feel like there is nothing and nobody out there for me?

That call was not the first LBBC had received about triple-negative breast cancer, or TNBC, a subtype that does not respond to therapies targeting estrogen, progesterone or HER2 receptors. Almost daily, we heard from women who felt deeply anxious and worried about their future. Those with early-stage TNBC feared recurrence, while women with stage IV demanded research to expand their limited their treatment options. All clamored for more, better, evidence-based information that could guide them through diagnosis, treatment, and beyond.

It was clear LBBC needed to take action. We partnered with the Triple Negative Breast Cancer Foundation on a Guide to Understanding Triple-Negative Breast Cancer  and a two-part webinar series, held each April. We developed a website section on TNBC, posting subtype-specific research news and clinical trials. But we knew we needed to do more. We needed evidence we could share with anyone who serves people with TNBC.

So in 2012 we sought funding to conduct a comprehensive needs assessment of women with TNBC, modeled closely on LBBC’s previous studies for women with metastatic disease and premenopausal women. Working with researcher Kathleen Swiger, MPH, we recruited an executive committee of advocates and prominent clinical professionals with a research interest in TNBC. We interviewed seven healthcare providers and women about their experiences, and held focus groups in four regions.

We then designed an 80-question online survey, informed by these activities, to answer one key question: Do women with TNBC want education, information and support tailored to the cancer’s triple-negative status?

Our initial analysis suggests the answer to this question is a resounding “yes.” The more than 650 women with TNBC who participated in the survey reported high levels of anxiety, fear and worry at diagnosis, during treatment and after treatment (for those with early-stage disease). They strongly preferred information and education be tailored to the cancer’s subtype—but often had trouble finding it. When asked to rate their interest in 35 topics, women with TNBC identified 10 that held significantly more interest for them than their peers with hormone-positive or HER2-positive disease. Those topics included fears of recurrence and chemobrain.

To raise awareness of our findings, we presented two posters at the San Antonio Breast Cancer Symposium in December 2014. Today, in recognition of Triple Negative Breast Cancer Awareness Day, we released an executive summary, Left Behind: Key Findings from Living Beyond Breast Cancer’s National Needs Assessment of Women with Triple-Negative Breast Cancer. The summary offers three action steps for individuals and institutions serving people with TNBC, and explains how we at LBBC are changing our programs to address the needs identified in our assessment.

In the 7 weeks we fielded the survey, more than 2,600 women participated. They reported a wide variety of breast cancer diagnoses at all stages. We are just beginning to explore that data. But it is clear women with TNBC have unique needs that require customized education, information and support.

In the years since we received that woman’s call, some things have changed. More organizations recognize the diverse causes of breast cancer. Researchers have identified several TNBC subtypes and are searching for targeted treatments. Still, there is much left to do. If that woman called us today, we could reassure her that many others share her fears, worries and frustrations, and LBBC and others are working hard to help her. We would tell her: you are not alone.

Janine E. Guglielmino, MA, is senior director of programs and partnerships at Living Beyond Breast Cancer. Janine oversees LBBC’s programs, services, publications, evaluation and research, including an ongoing needs assessment of women with triple-negative and other subtypes of breast cancer.

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