news wise – [Philadelphia, PA] November 30, 2022 – A majority (64%) of women diagnosed with breast cancer at or before age 45 report significant impacts on their sexual health, but 86% reported that their healthcare provider was unable to help with sexual health issues address, according to a needs assessment study carried out by Life beyond breast cancer (LBBC). LBBC will offer the study, “The Changing Information 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] is 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 in Florida four years ago. “You’re going to take the medicine because your priority is to stay alive, but issues like vaginal dryness are real and addressing them with your partner beforehand will 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%, only slightly higher than eight years earlier (46%) reported 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 have 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 in all groups of women affected by the disease. ” In the 2020 survey, 90% of respondents reported receiving genetic testing, but these 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 American women.
“Addressing impact on fertility and sexual health is a critical gap in the management and survival 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 must do better.”
The poster (PD8-07) will at 5:00 PM CT, Wednesday, December 7, 2022, during Spotlight Poster Discussion #8. Summaries 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 to US women diagnosed with any stage of breast cancer at or before age 45. About 9% of new breast cancer diagnoses in the US are women under the age of 45. Of the 717 women who completed the survey, 72% were Caucasian, 14% Black, and 6% Hispanic. Of the total, 61% were diagnosed in the last 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 US Centers for Disease Control. Other programs in the initiative include webinars, conference sessions, publications and advocacy trainings tailored for 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 on health topics relevant to them. For more information, visit lbbc.org/young-women.
Life beyond breast cancer is a national nonprofit that seeks to create a world that understands that there is more than one way to have breast cancer. To fulfill its mission to provide trusted information and a community of support to those affected 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 promotes self-advocacy and hope. For more information, visit lbbc.org or call 855-807-6386.