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Sexual side effects matter to young women

Results from Living Beyond Breast Cancer’s 2022 needs assessment show more focus needed on side effects


The poster, presented during the session on symptom management and associated toxicities, was among several that LBBC supported at SABCS. LBBC collaborated with Cancer Support Community and the Metastatic Breast Cancer Alliance to better understand unmet needs of people with stage IV HER2+ breast cancer with brain metastases and supported the work of Hear My Voice graduate Lesley Glenn’s Project Life, a virtual community for people with metastatic breast cancer, who reported on the value of virtual communities.


LBBC’s research spotlighted for first time

Living Beyond Breast Cancer was selected for a spotlight presentation, and speaker Michelle Melisko, MD, an associate clinical professor at UCSF, opened her session by discussing our research.

“It was such an honor to have LBBC’s project be selected for a spotlight poster session and have our work be elevated in this manner,” said Arin Ahlum Hanson, Living Beyond Breast Cancer’s director of outreach. “Our needs assessment was presented alongside scientifically robust studies, which shows the importance of including the patient voice when determining the best care for the breast cancer community. LBBC is grateful that SABCS and their research community recognize the value that patient advocacy organizations and advocates bring to the table.”

Though most people diagnosed with breast cancer are over age 50, the 9% who are diagnosed under age 45 often experience disproportionate psychosocial impacts. Our survey, conducted in September 2020, focused on this topic. Dr. Melisko explained that our survey responses were compared to a similar survey we fielded in 2012, comparing differences.

Most of the 717 women who completed our 88-item online survey were in their 30s when they learned they had breast cancer. All were diagnosed under 45. At the time of the survey, about 25% had been diagnosed within the past year, and nearly 40% were more than 5 years past diagnosis, with the remainder of respondents falling in between.

The results of the survey reveal unmet needs as well as areas of progress, Dr. Melisko said. More women are having genetic testing and being referred to genetic counselors compared to 2012, but Black women are still less likely to have testing (82% compared to 92% for other groups). And Hispanic participants were less likely to see a genetic counselor.

“While we were excited to see some indication that our young breast cancer community is receiving better care with the increase in the number of survey respondents receiving genetic testing and counseling, once we went a little deeper in the data, it was revealed that Black and Hispanic people diagnosed with breast cancer were not receiving these services at the same rate,” Arin said. “These communities deserve to have this important information to inform their breast cancer treatment, as well as understand how cancer may impact their family members. LBBC will continue to advocate for more genetic testing and counseling for these communities.”

A major theme of the survey were the challenges young women face with their sexual health, Dr. Melisko reported. Among the findings:

  • 62% of respondents said their health care team did not discuss the potential impact of breast cancer on sexuality before treatment
  • 66% of respondents were not satisfied with their sexual health, with the most common problem reported by 56% of respondents being lack of interest in sex.

The survey also highlights the need for support among young women. Overall, survey respondents experienced stress, depression, and problems with emotions 9.2 days/month, twice as many days as the national average of U.S. women.

Most survey participants (70%) said that they knew where to find information and support related to breast cancer. This is a change from 2012 when many survey respondents reported difficulty finding this information.

LBBC has made significant progress since 2020 in addressing the needs identified in our survey. We developed a series of sexual health videos focusing on changes in sexual interest, and we continue to improve and expand our Survivorship Series for Young Women, which trains oncology nurse navigators to implement a four-part education program focused on many of the needs highlighted in this needs assessment. In 2023, LBBC will develop an educational toolkit for healthcare providers to help them better address the sexual needs of their patients and refer them to vetted resources.


With the findings of this needs assessment and our long history serving the young breast cancer community, LBBC is well positioned to continue to push for the improved care of young people diagnosed with breast cancer. LBBC will continue elevate the voices of the young breast cancer community and advocate for better care for all people in spaces like SABCS, as well as with other key stakeholders.

Arin Ahlum Hanson, LBBC Director of Outreach


Advocates spotlight needs of people with HER2+ brain mets

A survey conducted by Cancer Support Community (CSC), in collaboration with Living Beyond Breast Cancer (LBBC) and the Metastatic Breast Cancer Alliance (MBCA), offers insight into the needs of people living with HER2+ breast cancer that has metastasized to the brain. LBBC and the MBCA helped recruit participants for the online survey.

The results point to a high level of unmet psychosocial need. Notably, 83% of respondents reported symptoms of anxiety, causing severe impairment for slightly more than half of them. CSC’s Victoria Morris, PhD, who led the study, hopes this finding will contribute to awareness of the need for anxiety screening among people with cancer—which currently is not part of routine oncology care.

Dr. Morris notes the critical role of advocacy organizations in uplifting key issues for the cancer patient community and the benefits of working together. “Collaboration was critical to successfully completing this project. Advocacy organizations are trusted sources of support and education for people with cancer. Collaborating across organizations creates more opportunities to do research within the community rather than on the community which is an important mindset which we bring to this work.”

Patient surveys offer value in multiple ways, according to Dr. Morris. They provide information to inform health care policies and services and they offer people with cancer an opportunity to give back—to share their experiences and offer insight that can help improve cancer care in the future.

This small study will provide the basis for future collaborations among advocacy groups and a larger study of people with metastatic HER2+ breast cancer. Cancer Support Community encourages anyone who has had cancer or has been a caregiver to someone with cancer and is interested in sharing their experiences to join their Cancer Experience Registry.


Hear My Voice grad creates virtual MBC community

LBBC Hear My Voice graduate Lesley Glenn founded Project Life, a virtual “wellness house,” to provide a safe online community for people with metastatic breast cancer. Project Life offers activities such as cooking and art classes, healing circles, and expert advice on an array of topics including a legal clinic, all online.

Lesley’s qualitative interviews with 36 members of the virtual community about the value it brings to their lives were presented at SABCS 2022 as well.


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