Beyond the Pink Ribbon: Combating Breast Cancer in Younger Women
About 316,950 new cases of invasive breast cancer will be diagnosed in women in the U.S. this year and about 42,170 will die from breast cancer.
As National Breast Cancer Awareness Month gets underway, research from ʦapp’s Christine E. Lynn College of Nursing is bringing attention to a concerning public health issue – early-onset breast cancer and the rising rates of breast cancer among women diagnosed under age 50.
Led by Tarsha Jones, RN, Ph.D., principal investigator and an associate professor in the Christine E. Lynn College of Nursing, the research focuses on young breast cancer survivors (YBCS) and highlights the critical importance of genetic testing, risk-reduction, and family risk communication. Supported by a multi-year grant from the National Institutes of Health, her study deepens the understanding of how younger women experience breast cancer and the unique challenges faced by this population.
Jones’ work is part of a growing call in the medical community to investigate why more women are being diagnosed younger, and how to provide equitable, evidence-based support – particularly as research suggests genetics only explain part of the picture. The research team conducted a cross-sectional study and surveyed 97 YBCS, all diagnosed under age 50, recruited from comprehensive cancer centers in New York and Florida. Additional women were also recruited through community-based organizations.
Key participant characteristics include:
- Mean age at diagnosis: 39.8 years ± 6.78 standard deviation (9.3% were diagnosed before age 30; 36.1% were diagnosed between ages 30 to 39; and the majority, 54.6% were diagnosed between ages 40 to 49).
- 41.2% identified as Hispanic/Latina; 37.1% as non-Hispanic white; 16.5% as Black/African American; 2.1% Asian; and 3.1% other.
- 55.8% reported a family history of breast cancer.
- Most common first warning sign? Felt a lump in the breast, discovered by chance or through a breast self- exam and not a mammogram.
- Only 24.2% of women reported that their breast abnormality was first detected via a mammogram.
These insights underscore the need for greater awareness of early warning signs and proactive risk management. While mammograms remain a crucial screening tool, self-awareness and timely action can be lifesaving.
“Our data shows that genetics – such as pathogenic mutations or variants – is only part of the big picture. We found that while most women, 93%, completed genetic testing, the majority, 76.1%, had negative test results,” said Jones. “We recognize that there are multiple determinants of health at play, and more research is needed to investigate the complex interaction between biological, behavioral, psychological, social and environmental exposures in order to reduce cancer health disparities and improve health outcomes for all women.”
Four women who were diagnosed at a young age and participated in the study courageously share their stories, as a reminder that breast cancer doesn’t come with an age limit. They are participating in a digital storytelling project, which highlights the human side of cancer and offers the unique perspectives of YBCS to educate, inspire and bring hope to other women.
Anastasia , a Black/African American study participant, learned about breast cancer awareness through an informational and decided to perform a self-exam in 2011 as a 28-year-old. She discovered a lump in her right breast but wasn’t concerned at the time. Later that year, a biopsy confirmed that she had stage IIb triple-negative breast cancer – an aggressive form of the disease. “Receiving that news at 28 is not something you want to hear,” said Anastasia. Unaware of her family history, she decided to get genetic testing. The results confirmed that she had a BRCA1 gene mutation or pathogenic variant, which also increased her risk for ovarian cancer. At 41, she proactively had her ovaries and fallopian tubes removed as a preventive measure. Now cancer-free for 13 years, Anastasia advises women to take charge of their health and consider genetic testing. “I encourage anyone going through this process to get tested – not just for yourself, but for your loved ones. Early testing can provide clarity and potentially spare you and your family from the many procedures I had to endure,” said Anastasia.
Margalit , a study participant of Ashkenazi Jewish descent, was diagnosed with stage II breast cancer in 2020 at age 31 after discovering a lump in the shower. At first, she thought she was the only person in the world going through this. “I would later realize there were growing numbers of young breast cancer patients,” said Margalit. With no family history of breast cancer, the diagnosis came as a shock. She underwent active treatment during the pandemic, including a double mastectomy, chemotherapy and endocrine therapy. But for Margalit, the hardest part came after treatment. “Post-cancer aftermath was harder than active treatment – and while that’s not true for everyone, resources are lacking for those who are struggling,” she said. She emphasizes the importance of onco-psychosocial support and therapy to address mental health challenges like anxiety, depression and fear of recurrence. While many worry about things like clean products or sugar intake, Margalit focuses on what she believes truly matters: treatment and lifestyle choices like limiting alcohol and not smoking. Now, five years out, she finds support through peer networks – women with similar experiences who understand the unique needs of young adult survivors. “I believe that the most effective treatment for these challenges is finding community,” she said.
Monica , a Hispanic study participant, discovered a lump in her right breast at age 37 while adjusting her bra during dinner in 2022. “I had a sinking feeling that I thought something was wrong,” she said. The next day, her gynecologist ordered further testing. She has a family history of breast cancer – her mother was diagnosed just five years prior. Following a mammogram, ultrasound and biopsy, she was diagnosed with stage II breast cancer. She underwent active treatment including a lumpectomy, radiation and chemotherapy. “My daughter was about 1 and my other daughter was just turning 3 and I had to do this for them,” said Monica. Just three months after completing radiation, her yearly mammogram revealed a suspicious finding. She sought a second and third opinion. After an MRI, biopsy and breast surgery, the cancer had returned. “It was not just in my lymph nodes, but in my breast again,” she said. Facing this difficult reality, she made the decision to have a double mastectomy. Employing a special surgery to prevent lymphedema, her surgeon removed 25 lymph nodes. Monica is almost three years cancer-free and is passionate about raising awareness and self-advocacy. “I just want to make sure the next person doesn’t have to go through everything I did,” she said. She urges young women to be their own advocate, to be loud, to be unforgettable and to ask every question.
Nediva , a Black/African American study participant, was diagnosed with stage I breast cancer in 2014 at age 33. She initially thought a lump in her right breast was a clogged milk duct, but it turned out to be cancer. Genetic testing showed she was negative for BRCA1/2 mutations. She fought fiercely, undergoing a double mastectomy, chemotherapy and endocrine therapy to reduce her risk of recurrence. But in 2019, the cancer returned. “I had no symptoms leading up to my second diagnosis,” she said. It was during a routine oncology visit that elevated tumor markers were detected. The news was a shock: stage IV metastatic breast cancer. She was thrust back into the emotional whirlwind of treatment. At first, the only person she confided in outside her family was a close friend also battling breast cancer – whose support was a lifeline until she passed away. After her second diagnosis, Nediva began a wellness journey, embracing a more holistic approach. Now 44, a 10-year cancer survivor and five-year metastatic survivor, she balances medical treatment with a plant-based diet, exercise, acupuncture, massage, supplements and mental health therapy – something she wishes she had started sooner. She currently has no evidence of active disease. Being a mom and wife keeps her going. Her family is her pride and joy, and being active in her children’s lives brings her purpose. “This is my story – about living with metastatic breast cancer, surviving, thriving and being a ‘Warrior Queen,’” she said.
With support from an NIH Mentored Research Scientist Award, interprofessional collaborations and a mentoring team, Jones is refining and evaluating a multi-component digital storytelling intervention tailored to the educational, clinical and psychosocial needs of YBCS.
Breast Cancer Awareness: What Can You Do?
- Know your body – Check your breasts – know what your normal feels like. Report any changes to your health care provider promptly.
- Know the screening guidelines – Women at average risk are recommended to have a mammogram starting at age 40. Get a mammogram, which is more accessible during breast cancer awareness month.
- Don’t wait for 40 – Younger women, talk to your doctor or nurse practitioner about risk assessment and earlier screening, especially if you have a family history or personal risk factors.
- Create a family health history – You can use and share what you know with close relatives as family risk communication can save lives.
- Know the risk factors – Learn about breast cancer risk factors that you can change and take small steps.
- Get genetic testing – Consider having multigene panel testing (i.e., breast cancer genes - BRCA1 and BRCA2 and more) especially if breast cancer runs in your family. Know your hereditary risk.
- Support ʦapp’s research and advocacy – continued funding is essential for moving this work forward.
“At ʦapp’s Christine E. Lynn College of Nursing, a caring science approach grounds everything we do – including breast cancer research. This philosophy transforms data into dignity, recognizing that behind every statistic is a whole person whose well-being is nurtured through presence, compassion and meaningful connection,” said Cameron Duncan, Ph.D., DNP, the Holli Rockwell Trubinsky Eminent Dean of Nursing in the Christine E. Lynn College of Nursing. “This research is a vital step forward in understanding and addressing the unique challenges young women with breast cancer face. By shedding light on these early diagnoses, we strive to inspire hope, drive prevention and ultimately save lives.”
About 316,950 new cases of invasive breast cancer will be diagnosed in women in the United States this year and about 42,170 will die from breast cancer.
“Women under 50, represent 16% of the total invasive breast cancer cases, according to the American Cancer Society,” said Jones. “Younger women with breast cancer have profoundly different experiences, complex challenges and are more likely to die of the disease compared to older women with the disease, emphasizing the critical importance of ongoing support for women’s health research.”
The individual stories were shared with permission from the survivors. This work is supported by the NIH-National Cancer Institute (K01CA241393-05).
-ʦapp-
Tags: faculty and staff | research | nursing | community