SAN ANTONIO—A survey of women diagnosed with triple-negative (i.e., estrogen receptor-negative, progesterone-receptor-negative, and HER2 receptor-negative) breast cancer shows the increased fear, anxiety, and worry that they experience compared with women with hormone receptor (HR)-positive disease—and that the triple-negative patients seek information tailored to their condition, researchers reported at the San Antonio Breast Cancer Symposium.
“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,” said Jean Sachs, MSS, MLSP, Chief Executive Officer of Living Beyond Breast Cancer, a national education and support organization based in Pennsylvania.
The research team, led by Janine Guglielmino, MA, and Kathleen Swiger, MPH, MA, analyzed survey responses from 656 women who had been diagnosed with triple-negative breast cancer (TNBC) and compared their responses with those received by 1,954 women with HR-positive breast cancer.
The 80-question online survey, supported by funding from Genentech and Celgene, was conducted nationwide from November 2013 to January 2014. Women who had been diagnosed with breast cancer after 2006 were eligible to participate in the survey.
The findings were reported in two poster presentations: one focusing on education and information preferences, assessing whether personal or medical demographic variables should affect the way that educational programs for breast cancer patients should be tailored; and the other assessing the emotional/psychological characteristics of women with TNBC and attempting to answer the question of whether socioeconomic, demographic, and provider variables have an impact on emotional changes from diagnosis to post-treatment.
The results showed:
- Compared with women diagnosed with HR-positive breast cancer, patients with TNBC had a significantly stronger preference for information tailored to breast cancer subtype—about 71 percent of the women with TNBC sought more tailored information compared with 49 percent of women with HR-positive disease;
- Education and information tailoring preferences showed marked differences by breast cancer subtype—women with TNBC strongly preferred receiving education and information specifically tailored to their breast cancer subtype and their race/ethnicity;
- Across all women, advancing stage of cancer influenced preference toward stage-tailored materials;
- About 67 percent of the TNBC patients reported high levels of fear compared with 62 percent of the HR-positive group;
- About 68 percent of the TNBC group said they had high anxiety about their condition compared with 64 percent of the HR-positive group;
- Upon completion of initial treatments, 58 percent of the TNBC patients reported a decrease in fear compared with 66 percent of women with HR-positive disease;
- After treatment, 54 percent of the TNBC patients reported a decrease in anxiety compared with 65 percent of women with HR-positive disease;
- After treatment, 53 percent of women with TNBC reported a decrease in worry compared with 63 percent of women with HR-positive breast cancer;
- Among women diagnosed with TNBC who were raising young children, after therapy this group was more likely to have a decrease in worry, but also more likely to report feeling more worried overall; and
- Of the women diagnosed with TNBC, about 56 percent had at least one child living a home; 17.5 percent had children age five or younger; and about 34 percent had children age six to 12.
The researchers noted that of all breast cancers diagnosed, 10 to 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.
Asked for her perspective for this article, Stephanie Bernik, MD, Chief of Surgical Oncology at Lenox Hill Hospital in New York City, said it is not surprising that women with triple-negative breast cancer face a heightened sense of anxiety regarding their breast cancer diagnosis.
“It is comforting for patients to hear their doctors tell them that there have been a variety of drugs to combat hormonally sensitive tumors and tumors that overexpress HER2 receptors,” she said. Because there have been fewer advances made with the treatment of triple-negative tumors, women are left with a feeling of anxiety regarding their diagnosis. This is not unexpected, as treatments for breast cancer have become more tailored, leaving women with triple-negative cancers fewer options for therapy compared with other subtypes.”
The mean age at diagnosis for the women with TNBC in the survey was 47.4 years, but included women as young as 24 and as old as 74. The mean age of women with hormone-positive disease was similar: 47.9 years with a range of 28 to 73, the researchers reported.
At the time of diagnosis, three percent of women were diagnosed with Stage 0 (ductal carcinoma in situ), 27 percent had Stage 1 disease; 45.9 percent were diagnosed with Stage 2, 20.1 percent were diagnosed with Stage 3; 1.5 percent were diagnosed at Stage 4, and 2.4 percent of the women were unsure at what stage they were when first diagnosed.
Sachs said that to their knowledge, the study is the first to examine the differences in psychosocial needs of breast cancer patients by disease subtype.
The TNBC subtype is relatively newly identified, the researchers explained: In late 2006, medical journals began to publish reports about the disease. Standard treatment is chemotherapy and surgery, with or without radiation, with no further therapy to reduce the risk for recurrence.
“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 Living Beyond Breast Cancer-sponsored webinars, community meetings, conference workshops, and first-person blogs on our website. And they're frustrated that they don't have more treatment options.
“Living Beyond Breast Cancer uses the term ‘tailored resources’ because with breast cancer treatment becoming more personalized we know that depending on a woman's specific diagnosis she needs tailored information. In the case of triple-negative breast cancer, women cannot take advantage of any kind of hormonal treatment, so Living Beyond Breast Cancer does not want them to have to sift through information that is not specific to their diagnosis and treatment options,” Sachs continued.
“In addition, they want to find other women with a triple-negative diagnosis to network with. Breast cancer is no longer one disease, so tailored information is critical is helping patients find appropriate information and support.”
After analyzing their survey findings, the research team concluded that health care providers, cancer centers, and breast cancer organizations should consider developing education and information tailored to the needs of triple-negative breast cancer patients and survivors.