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LBBC Studies Needs of Women with Triple-Negative Breast Cancer

by Winnie McCroy
EDGE Editor
Tuesday Dec 16, 2014

Women who have been diagnosed with triple-negative breast cancer (TNBC) have a significantly stronger preference for information tailored to their cancer subtype and experience greater fear, anxiety and worry at all points from diagnosis through treatment, according to a first-ever study conducted by Living Beyond Breast Cancer (LBBC), the national education and support organization.

??"As research moves forward on finding new treatments for triple-negative breast cancers, LBBC is committed to supporting the psychosocial and educational needs of people now in treatment and those beyond," said LBBC CEO Jean A. Sachs, MSS, MLSP. "Improving the quality of life for people with TNBC by documenting their needs is the focus of our efforts."??

Results of the study were presented at two poster sessions at the San Antonio Breast Cancer Symposium at the Henry B. Gonzalez Convention Center on December 11-12. ??"Triple-negative" refers to subtypes of breast cancer that lack the three receptors known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). These types of breast cancer are typically responsive to chemotherapy, but not to the more modern treatments that target these receptors.
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Of all breast cancers diagnosed, 10-20 percent are triple-negative, and among African-American women, there is a 30 percent chance that a breast cancer will be triple-negative. Women who test positive for the BRCA1 gene mutation, premenopausal women, and young African-American and Hispanic women are also more likely to be diagnosed with TNBC.

LBBC built a team of researchers from leading breast cancer centers and organizations across the country in undertaking the investigation, the first known survey to examine the differences in psychosocial needs of people with breast cancer by disease subtype.

"To our knowledge, no one had ever conducted research to see whether women with triple-negative breast cancers have unique needs, and we found that they do," Sachs said.??

LBBC decided to pursue research funding for the studies after working with the Triple Negative Breast Cancer Foundation on the LBBC "Guide to Understanding Triple-Negative Breast Cancer."

"Women we spoke to wondered why they couldn't benefit from all the progress and targeted therapies they were hearing about. The feeling of 'there's nothing for me' fuels fears of recurrence. So we undertook a study of all women with breast cancer to compare the differences," Sachs said.?? "Women with triple-negative breast cancers are information seekers, as we can see from the thousands of interactions we have with them via LBBC sponsored webinars, community meetings, conference workshops and first-person blogs on LBBC's website. And they're frustrated that they don't have more treatment options."??

The study, conducted from November 2013 to January 2014, compared the responses of 656 women diagnosed with TNBC (25.1%) with those of 1,954 women with other subtypes of breast cancer (74.9%). LBBC distributed an 80-question online survey, designed to identify education, information, and support needs, throughout the United States. The analysis included those who were diagnosed with breast cancer after 2006.??


In the first abstract to be released at the symposium, "Emotional/psychological characteristics of women with triple-negative breast cancer: Do socioeconomic, demographic, and provider variables impact emotional change from diagnosis to post-treatment?" researchers concluded that women with TNBC experience greater fear, anxiety, and worry than women with non-TNBC subtypes at all points from diagnosis though post-treatment. While women with all breast cancer subtypes report a reduction in negative emotion over time from treatment to post-treatment, this change is less profound in TNBC women and appears to be driven nearly entirely by concern about the disease.

The marginal effect on change in fear with respect to income may reflect concerns about paying for care, and increased worry in women with small children may reflect concerns about prognosis. Most strikingly, cancer stage was the strongest modifier of emotional change: TNBC women at cancer stage >=2 showed the least decline in negative emotion compared to corresponding non-TNBC women. These data support the development of TNBC-specific interventions focused on these patients' emotional needs during and after treatment.

??The second abstract from the study, "Education and information preferences for women with triple-negative breast cancer: Should personal or medical demographic variables impact program tailoring?" found that compared to non-TNBC women, TNBC women had a significantly stronger preference for information tailored to breast cancer subtype (71% vs. 49%, p<0.001) and race/ethnicity (5% vs. 2%, p=0.002), and significantly lesser preference for tailoring based on cancer stage (43% vs. 47%, p=0.004) and living situation (15% vs. 25%, p<0.001). Living situation referred to whether the respondent was single, married, had children, was a student or was retired.?? Researchers concluded that healthcare providers, cancer centers and breast cancer organizations should consider developing education and information tailored to the needs of TNBC patients and survivors.

Living Beyond Breast Cancer will use the findings of its survey to expand and enhance the information and support programs it provides for people coping with TNBC in 2015 and beyond. In January, it will release a public summary of survey findings so healthcare professionals, advocates and others can apply LBBC's learnings to programs and services for people with triple-negative disease.??

Living Beyond Breast Cancer (LBBC) is a national nonprofit organization dedicated to connecting people with trusted breast cancer information and a community of support. LBBC addresses the current needs of people affected by breast cancer, whether they are newly diagnosed, in treatment, recovery or living with a history of or managing a metastatic form of the disease. Resources, including publications, webinars, and a peer Helpline, are developed in collaboration with the nation's leading oncologists, health professionals and ally organizations, and delivered by people who understand the physical and emotional complexities of breast cancer. LBBC offers its programs and services in a variety of printed and digital formats; most are free of charge.


For more information, visit lbbc.org.

Winnie McCroy is the Women on the EDGE Editor, HIV/Health Editor, and Assistant Entertainment Editor for EDGE Media Network, handling all women's news, HIV health stories and theater reviews throughout the U.S. She has contributed to other publications, including The Village Voice, Gay City News, Chelsea Now and The Advocate, and lives in Brooklyn, New York.


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