Newswise — [Philadelphia, PA] November 30, 2022 – A majority (64%) of women diagnosed with breast cancer at or before age 45 report significant impacts to their sexual health, yet 86% reported that their health care provider was unable to help address sexual health issues, according to a needs assessment study conducted by Living Beyond Breast Cancer (LBBC). LBBC will present the study, “The Changing Informational Needs of Young Women Affected by Breast Cancer: A National Needs Assessment,” during the 2022 San Antonio Breast Cancer Symposium®, December 6–10, 2022, in San Antonio, Texas.
“[Sexual side effects] are a natural consequence of what you’re going to experience, but you don’t know what to expect until you take the medicine and your libido goes away,” said Sara Montiel, 40, of Lexington, MA. She was treated for Stage 3 breast cancer four years ago in Florida. “You’re going to take the medicine because your priority is to stay alive, but issues like vaginal dryness are real and addressing them in advance with your partner would help the conversation.”
The survey also found that the percentage of young women who reported discussing fertility issues with their health care providers was 49%, just slightly higher than was reported eight years earlier (46%) in a 2012 LBBC assessment. “As a community, we must continue to advocate on behalf of young women with breast cancer,” said Jean Sachs, MSS, MLSP, CEO of Living Beyond Breast Cancer. “We've seen some positive gains, including an increase in the number of young women accessing genetic counseling and testing, but we cannot rest until those gains are seen across all groups of women impacted by the disease.” In the 2020 survey, 90% of respondents reported receiving genetic testing, but those numbers were 82% for Black participants and 35% for Hispanic respondents.
In other findings, respondents reported experiencing stress, depression and problems with their emotions an average of 9 days in the past month, twice the average among U.S. women.
“Addressing impacts on fertility and sexual health are a critical gap in the management and survivorship of women diagnosed with breast cancer,” said Arin Ahlum Hanson, MPH, LBBC’s Director of Outreach and lead author of the study. “As a community, we need to do better.”
The poster (PD8-07) will be presented at 5 p.m. CT, Wednesday December 7, 2022, during Spotlight Poster Discussion #8. Abstracts for the session are available at SABCS.org.
The 2020 survey consisted of an 88-item online questionnaire administered by REDCap between August and September 2020 among U.S. women diagnosed at or before age 45 with any stage of breast cancer. About 9% of new breast cancer diagnoses in the U.S. are women under age 45. Of the 717 women completing the survey, 72% were Caucasian, 14% Black, and 6% Hispanic. Of the total, 61% had been diagnosed in the past five years, and 25% of the total were diagnosed with Stage 4 metastatic disease.
Both the 2012 and 2020 needs assessments were part of LBBC’s Young Women’s Initiative, a program funded through a cooperative agreement with the U.S. Centers for Disease Control. Other programs in the Initiative include webinars, conference sessions, publications, and advocacy trainings tailored to young women. In addition, LBBC curates the latest breast cancer research on young women, profiles young women in its award-winning blog, and works with young women affected by breast cancer to produce videos about health topics relevant to them. For more information, visit lbbc.org/young-women.
Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer. To fulfill its mission of providing trusted information and a community of support to those impacted by the disease, Living Beyond Breast Cancer offers on-demand emotional, practical and evidence-based content. Nearly 30 years since its inception, the organization remains committed to creating a culture of acceptance—where sharing the diversity of the lived experience of breast cancer fosters self-advocacy and hope. For more information, visit lbbc.org or call 855-807-6386.
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