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Survey Finds Sexuality and Fertility Discussions Remain Sidelined Among Young Patients Diagnosed With Breast Cancer


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In a new survey, a majority (64%) of patients diagnosed with breast cancer younger than 46 years reported significant impacts to their sexual health, yet 86% of patients reported that their health-care provider was unable to help address sexual health issues, according to findings presented by Hanson et al at the 2022 San Antonio Breast Cancer Symposium (Abstract PD8-07).

“[Sexual side effects] are a natural consequence[s] 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 40-year-old Sara Montiel, who was treated for stage III breast cancer in 2018. “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.”

In the needs assessment survey—conducted in 2020 by the nonprofit organization Living Beyond Breast Cancer—the investigators discovered that the percentage of young patients who reported discussing fertility issues with their health-care providers was 49%, just slightly higher than was reported 8 years earlier (46%) in a 2012 Living Beyond Breast Cancer assessment.

“As a community, we must continue to advocate on behalf of young [patients] with breast cancer,” stressed Jean Sachs, MSS, MLSP, Chief Executive Officer of Living Beyond Breast Cancer. “We've seen some positive gains, including an increase in the number of young [patients] accessing genetic counseling and testing, but we cannot rest until those gains are seen across all groups of [patients] impacted by the disease.”

The 2020 survey consisted of an 88-item online questionnaire taken by patients younger than 46 years, who were diagnosed with any stage of breast cancer. Among the 717 respondents, 72% of them identified as Caucasian, 14% as Black, and 6% as Hispanic; 61% of the respondents had been diagnosed in the past 5 years, and 25% of the total were diagnosed with stage IV breast cancer.

In the 2020 survey, 90% of respondents reported receiving genetic testing, but those numbers were 82% for Black respondents and 35% for Hispanic respondents. In other findings, respondents reported experiencing stress, depression, and emotional problems for an average of 9 days in the past month—twice the average among female patients in the United States.

“Addressing impacts on fertility and sexual health are a critical gap in the management and survivorship of [patients] diagnosed with breast cancer,” highlighted lead study author Arin Ahlum Hanson, MPH, Director of Outreach at Living Beyond Breast Cancer. “As a community, we need to do better.”

Disclosure: Both the 2012 and 2020 needs assessments were part of Living Beyond Breast Cancer’s Young Women’s Initiative, a program funded through a cooperative agreement with the U.S. Centers for Disease Control and Prevention. For more information on the initiative and the assessments, visit lbbc.org.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
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