Living Beyond Breast Cancer Presents Results of First Survey of Psychosocial Needs of Women with Triple-Negative Breast Cancer

LBBC News
December 10, 2014

Women with triple-negative cancers seek information tailored to subtype, report greater anxiety at all stages from diagnosis through post-treatment.

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. Results of the study will be presented at two poster sessions at the San Antonio Breast Cancer Symposium at the Henry B. Gonzalez Convention Center on December 11 and December 12, 2014.

“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.

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.

“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,” says 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.”

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,” Jean says.

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,” Jean says.

Women with triple-negative breast cancers are information seekers,” Jean adds, “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.

The first 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 less 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.

In the second abstract to be presented 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.”

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 our survey to expand and enhance the information and support programs we provide for people coping with TNBC in 2015 and beyond. In January, we 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.

Scheduled times for poster presentations are below:

Thursday, December 11, 2014, 7:30 am CT, Exhibit Hall A-B: Abstract #1195

Education and information preferences for women with triple-negative breast cancer: Should personal or medical demographic variables impact program tailoring?

Swiger KD, Sendecki JA, Guglielmino JE, Rugo H, Anders CK, Domchek SM, Ahlum Hanson A, Dinerman H, Creme Henry C. Consultant, Greensboro, NC; Living Beyond Breast Cancer, Haverford, PA; Statistical Consultant, Philadelphia, PA; University of North Carolina at Chapel Hill, Chapel Hill, NC; University of Pennsylvania, Philadelphia, PA; Triple Negative Breast Cancer Foundation, Norwood, NJ.

 Friday, December 12, 2014, 5-7 pm CT: Exhibit Hall A-B, Abstract #1194

Emotional/psychological characteristics of women with triple-negative breast cancer: Do socioeconomic, demographic, and provider variables impact emotional change from diagnosis to post-treatment?

Swiger KD, Sendecki JA, Guglielmino JE, Rugo H, Anders CK, Domchek SM, Ahlum Hanson A, Dinerman H, Creme Henry C. Consultant, Greensboro, NC; Statistical Consultant, Philadelphia, PA; Living Beyond Breast Cancer, Haverford, PA; University of North Carolina at Chapel Hill, Chapel Hill, NC; University of Pennsylvania, Philadelphia, PA; Triple Negative Breast Cancer Foundation, Norwood, NJ.

LBBC received funding from Genentech and Celgene for this project.

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