Survey Reveals Missed Care Opportunities Amid Rising Breast Cancer Rates in Young Women; Nearly 50% Unsure about Family History
PHILADELPHIA, PA — Today, Breastcancer.org released findings from its new survey, Understanding the Experiences of Young People with Breast Cancer, which highlights how young people are navigating their diagnoses — and where the healthcare system is falling short. The survey, based on responses from nearly 1,500 people, points to critical gaps in risk assessments, genetic testing, and fertility support, especially among Latin American and Black people.
Key findings include:
Missed Risk Assessments: Many young women had no breast cancer risk assessment before diagnosis — including 37% of Latin American respondents, 33% of white, and 24% of Black respondents. Among those who were assessed, Black respondents were the least likely to be identified as high risk (12% vs. 17% of Latin American and 15% of white respondents). Across all groups, large numbers said they were not informed or were unsure about what their family history meant (47–58%).
Barriers to Genetic Testing: Only 61% of Latin American respondents were informed about genetic counseling, compared with 76% of white and Black respondents. Black respondents were nearly twice as likely as white respondents to be unaware of their genetic risks (44% vs. 23%). Few completed testing before diagnosis (9% of white people, 6.5% of Black people), with most tested during initial diagnosis. Cost and lack of information were the top barriers, even though 11–16% carried genetic mutations that could impact treatment and family members’ health.
Fertility Left Out of the Conversation: Of the young women surveyed, 85% discussed treatment’s impact on fertility with their doctor, yet 1 in 5 said they had to raise the topic themselves. When asked more specifically about fertility services and preservation options, nearly one-quarter (23%) said the discussion was brief or only happened after they brought it up, 19% said it never came up because they didn’t know to ask, and 3.5% said it was not addressed even after expressing concerns.
Disparities in Support: Just 33% of Latin American people were referred to fertility services, compared with 46% of white and 36% of Black people. Latin American people also had the lowest access to financial assistance (6% vs. 23–26% for others), the lowest rates of insurance coverage (16% vs. 24–26%), and the highest regret over fertility decisions (29% vs. 12–16%).
The data reinforces what many young patients have been saying for years: their concerns are often dismissed or overlooked. Breastcancer.org is highlighting these experiences in its Special Series: Young With Breast Cancer, which explores topics ranging from fertility and pregnancy after treatment to the impact of birth control, plastics, and IVF on breast cancer risk. The series also includes firsthand stories and podcasts on navigating diagnosis and survivorship at a young age. “We are often not taken as seriously by our doctors when we first present with symptoms. Many of us are brushed off simply because ‘we are too young.’ Advocate for your health because no one else will!” said Courtney, a member of the Breastcancer.org community diagnosed with early-stage breast cancer. First names only are used to protect the privacy of Breastcancer.org community members, who provided consent to share their experiences.
Others describe how a lack of guidance left them unprepared for the lifelong consequences of treatment. “I thought once chemo and surgeries were done, I’d bounce back. No one warned me how long and nonlinear recovery would be — the fatigue, the brain fog, and my body don’t feel like mine anymore,” said Tamara.
“Young women are being diagnosed with breast cancer at rising rates, often at the very moment they’re building careers and families — and too often, they’re left without the fertility or genetic guidance that could shape the rest of their lives,” said Marisa C. Weiss, MD, lead investigator of the study, Founder, and Chief Medical Officer of Breastcancer.org.
Dr. Weiss emphasized that progress in research must be matched with progress in patient support. “We’re making important strides in how we discover and treat breast cancer, but each generation brings new and unique challenges. For young women, issues like risk, fertility, and survivorship can shape the course of their entire lives. We must continue pushing for earlier education, stronger referrals, and better insurance protections to ensure every woman gets the support she deserves.”
She added that broader societal shifts may be contributing to these trends. “Lifestyle, reproductive, and environmental changes — from earlier puberty to delayed childbearing and greater chemical exposures — may all play a role in the rising rates of breast cancer in young people. These changes, combined with systemic gaps in care, mean that young women are facing diagnoses at a time in life when fertility, careers, and family-building are top of mind.”
To learn more about these findings and explore Breastcancer.org’s reporting on the rise of breast cancer in young women, including stories and insights from those diagnosed under 45, visit the Special Series: Young With Breast Cancer landing page. There, you can also register for our upcoming webinar, Breast Cancer Before 45, on October 21, 2025.
Support for this study and reporting was made possible by Novartis, Lilly, and Pfizer.
About Breastcancer.org
Breastcancer.org is a leading patient-focused resource dedicated to providing reliable, up-to-date information and support to those affected by breast cancer. Founded in 2000 by chief medical officer Marisa C. Weiss, MD, it empowers people with research, expert information, and a dynamic peer support community to help them make the best decisions for their lives. Since its inception, the nonprofit organization has reached 250 million people worldwide.
Daisy Diaz
Director of Communications
Breastcancer.org
ddiaz@breastcancer.org
484-418-2118
— Last updated on October 1, 2025 at 5:56 PM