Needs assessment identifies 6 key gaps in care of young women diagnosed with breast cancer

Physical, emotional and sexual needs are among the key areas that young women with breast cancer identified as gaps in their care, according to Living Beyond Breast Cancer (LBBC.ORG). LBBC conducted a national needs assessment of young women diagnosed with the disease in September 2020 to better understand their unique needs and how best to serve them. Six key survey findings revealed that, in addition to being under age 45 at diagnosis, several factors influence how a young woman experiences breast cancer diagnosis, treatment and survivorship. Those factors include her race, ethnicity and cancer stage, as well as how far out she is from diagnosis.

The 2020 survey continues the work of a similar 2012 needs assessment carried out by Living Beyond Breast Cancer. While treatments may be similar depending on the exact diagnosis, young women face challenges from fertility impacts to parenting issues, and experience depression, anxiety, and long-term treatment impacts differently than older women. In the United States, the median age of breast cancer diagnosis in women is 62. Yet the number of women diagnosed at or below age 45 continues to rise each year.

The six key findings are:

1. Breast cancer causes significant physical, mental and emotional impacts on young women, and these impacts differ based on race and ethnicity, cancer stage, and time since diagnosis.

Women taking the survey within one year of diagnosis, those age 29 or younger at diagnosis, Hispanic women, and women with stage III or IV breast cancer reported the highest average number of days with poor mental health within the last month. Similarly, women taking the survey between one and two years since diagnosis, those between ages 30 and 39, Hispanic women, and women living with stage IV breast cancer reported the highest average number of days of poor physical health within the last month.

Black and Hispanic women reported a higher rate of fatigue, insomnia, and trouble sleeping now than did Caucasian women. Hispanic women also reported more anxiety, depression, or panic attacks now than did other ethnic groups.

2. Addressing sexual health side effects is a critical gap in the care of young women with breast cancer. Most survey respondents reported their healthcare provider was unable to help address sexual health needs.

Race and ethnicity, as well as cancer stage, impacted the types of sexual health needs. Hispanic women were the most likely to report pain during sex as their primary sexual health issue. Significantly fewer Black women reported problems with little or no interest in sex as their primary sexual health issue than other ethnic groups.

While between 40% and 62% of people in all cancer stage groups reported little or no interest in sex as the sexual health problem that was most bothersome, it was reported most often by those diagnosed with stage III and stage IV breast cancer.

3. Since the 2012 assessment, more diagnosed young women are accessing treatment-recommended genetic counseling and testing services, but in 2020 key disparities still exist for some racial and ethnic groups.

Black participants were less likely to have genetic testing than other ethnic groups overall. Hispanic participants were less likely to see a genetic counselor.

4. The 2020 needs assessment found no increase over the last 8 years in the likelihood of healthcare providers discussing the potential impacts of treatment on future fertility.

The percentage of young women reporting discussions about fertility with their healthcare providers and the percentage reporting they initiated the conversation themselves remain virtually unchanged from 2012 to 2020.

5. More young women are finding information and support, but there are differences in the ways they want to receive information based on ethnic background.

Hispanic and Caucasian women reported finding the best information on sexual health through peers diagnosed with breast cancer, while Black women reported finding the best information through cancer organizations.

6. How young women want to receive emotional support services and to connect with other women with breast cancer differs based on cancer stage and ethnicity.

Women with DCIS were most likely to prefer social media for emotional support and connection. Young women with stage IV breast cancer rated all types of emotional support services highly, with a lower preference for in-person support.

More Black women reported that it is very important to connect with other young women with breast cancer who shared their racial and/or ethnic background. More Black and Hispanic women reported it was very important to connect with other women who shared their diagnosis than other ethnic groups.

“As an organization, Living Beyond Breast Cancer has a longstanding commitment to young women and to providing information about the unique ways a breast cancer diagnosis impacts their lives,” says Jean Sachs, MSS, MLSP, Living Beyond Breast Cancer’s CEO. “These
findings provide new avenues for LBBC to help young women navigate a complex and life-changing event. They also provide useful information to help healthcare providers and cancer advocates who work with young women impacted by breast cancer.”

As a result of this information, Living Beyond Breast Cancer has produced and released its first set of videos on fertility and parenting and will release videos on sexual health later in the year. For additional information, please review our summary report “Key Findings from Living Beyond Breast Cancer’s National Needs Assessment of Young Women Affected by Breast Cancer” (PDF).