Adolescent health
Research highlights challenges faced by young women with advanced breast cancer
Nearly half of women under 40 with advanced breast cancer have children under 18, with many facing job disruption and financial strain, new research has found.
A global survey has revealed the challenges faced by young women with advanced breast cancer, with 64 per cent reporting employment disruption after diagnosis and 40 per cent incurring medical debt.
Findings from 385 women under 40 living with advanced breast cancer across 67 countries were presented at the Advanced Breast Cancer Eighth International Consensus Conference (ABC8) in Lisbon.
The Project 528 survey was led by the Young Survival Coalition.
Advanced breast cancer (ABC) occurs when the disease spreads beyond the original tumour to other parts of the body. While treatments can slow progression, it remains incurable.
Financial security fell from 51 per cent before diagnosis to just 3 per cent after treatment began.
Although 84 per cent said they felt able to ask questions at diagnosis, 40 per cent delayed seeking care – often because primary care physicians dismissed their concerns, or due to lack of awareness or fear.
Jennifer Merschdorf, chief executive officer of Young Survival Coalition, said: “We launched Project 528 to fill a critical gap – the voices of young adults living with advanced breast cancer are often under-represented in clinical discussions and policy dialogues.
“For the first time, we now have global data that reflect the voices of young women with advanced breast cancer.
“This survey gives us the evidence we need to understand their unique challenges and to ensure that research, services and policies are shaped by their lived experiences – not by assumptions.”
Of the 385 women surveyed, 48 per cent had children under 18. Only 14 per cent were diagnosed through clinical screening or routine check-ups, while 85 per cent detected the disease themselves after noticing symptoms.
Eighty per cent reported psychological distress. Concerns about body image, fertility and sexual health were widespread but rarely addressed.
Practical challenges such as childcare, housekeeping and transport were common, leaving many with unmet needs.
Access to precision diagnostics varied.
While 90 per cent received genetic testing for inherited mutations – changes in DNA passed down from parents – only 59 per cent had genomic testing of tumours.
This identifies mutations within the cancer itself, helping doctors understand tumour activity and recurrence risk to guide treatment.
Although 77 per cent said they understood their treatment plans, 25 per cent lacked clarity and only 46 per cent were offered more than one treatment option.
Understanding of targeted therapies – drugs designed to attack specific cancer cell features – was the lowest among treatment types.
Online communities were an important source of information and support, but only 43 per cent of respondents were referred to them by their care teams.
“Our analysis of young women living with ABC underscores a consistent theme,” said Merschdorf.
“The current standard of care, while medically advanced, remains deeply fragmented when it comes to the lived realities of younger ABC patients.
“From diagnosis delays to unmet psychosocial needs, patients face a system that too often demands self-advocacy in the face of fatigue, fear and financial strain.”
The Young Survival Coalition plans further research to explore the unique needs of younger patients with ABC.
“Advanced breast cancer poses a complex set of challenges for younger adults, whose experiences with this incurable illness intersect with critical phases of career, parenting and identity development.
“Project 528 provides a roadmap for researchers to investigate the issues that respondents identified as the most pressing, while also guiding supportive services and advocacy organisations to align their programmes with those needs.
“Beyond research and services, these findings can inform the development of health policies that better reflect and support the lived experiences of young adults facing breast cancer.
“Ultimately, the goal is for these data to drive meaningful improvements in research, care and policy that truly serve this community.”
Professor Fatima Cardoso, medical oncologist and president of the ABC Global Alliance, said: “This is an important study that shows, for the first time, the experiences of young patients living with advanced breast cancer and the challenges they face in their daily lives.
“It is concerning that not all of the women in this study were offered tests to see whether or not they had inherited cancer-causing genetic mutations, and to understand the biology of the tumour itself.
“In an age of precision medicine, all breast cancer patients should have access to these tests as they have a crucial role in treatment decision-making and hence impact on survival and quality of life.
“I hope that policymakers will take note of the results of this study and address the many gaps that it highlights in terms of diagnosis, treatment and supportive care, but also psychosocial and financial support.”
France will reimburse reusable period products for women under 26 and those on low incomes, in a move aimed at tackling period poverty.
The measure is expected to help 6.7m people, almost a tenth of France’s population of 69m, from the start of the next academic year in the autumn.
Women under 26 with a state health insurance card, as well as women of all ages who receive special healthcare support because of limited income, will be able to claim reimbursement after buying the products from a pharmacy. The cost will be covered through the country’s social security system.
Parliament approved the measure as part of the country’s social security budget for 2024. However, no decree was issued to bring it into force, prompting anger among feminist groups and companies making the sustainable sanitary items.
A survey of 4,000 women in France in November found that one in ten had used alternatives to mainstream period products, such as ripped-up clothes, because of tight budgets, according to French charity Dons Solidaires.
France cut sales tax on period products from 20 per cent to 5.5 per cent in 2016. In 2020, Scotland became the first country in the world to sign into law free universal access to period products in public buildings.
A new Female Health Hub launched by the English FA will support women and girls in grassroots football in England with trusted advice on health issues affecting play.
The hub brings together expert-backed guidance, practical tools and player insights in one place, giving women and girls practical advice and reassurance on female health in football.
It has four core aims: to help women and girls better understand their bodies and how female health affects performance and participation, to educate players on key health topics and when to seek further advice or support, to provide practical strategies to help navigate common female health challenges, and to help break down taboos and normalise conversations around female health in football.
Users of the hub will also be able to hear directly from members of the England women’s national team, who share their own experiences of navigating female health matters while playing at the highest level of the game.
“Our ambition is to create a game where women and girls can thrive,” said Sue Day, the FA’s director of women’s football.
“To achieve that, it’s essential that players feel supported in environments that understand and respond to their female health needs.
“We’ve heard directly from grassroots players that they want better information and support around female health, but that they often don’t know where to find it.
“The launch of the Female Health Hub marks an important step in changing the landscape.
“We want every player to feel confident in her own skin and supported without judgment, so she can feel empowered by her body, rather than held back by it.”
The platform was launched following research conducted by the FA that highlighted the need for better education and support around female health in football.
According to the FA, 88 per cent of adult players surveyed said their menstrual cycle has an impact on their ability to train or play, but 86 per cent reported they had never received education about the menstrual cycle in relation to football performance and training.
The research also found 64 per cent of women experience issues related to sports bras or breast health while playing football, despite sports bras being considered one of the most important pieces of playing kit.
Players also expressed strong interest in learning more about injury prevention, at 87 per cent, nutrition, at 84 per cent, and mental health, at 77 per cent, in relation to female health.
The first phase of the Female Health Hub focuses on three of the most requested topics: menstrual health, breast health and injury resilience, with further content to follow, including nutrition and pelvic health guidance.
Childhood abuse may alter gene activity in some women, raising depression risk, UK Biobank analysis suggests.
The pattern was not seen in men, suggesting the biological links between trauma and depression may differ by sex, an area of interest given higher depression rates among women.
Using data from thousands of people in the UK Biobank, the team analysed childhood experiences, mental health and genetic profiles, focusing on a gene network involved in synaptic function, the way brain cells communicate, which is disrupted in depression.
Researchers at McGill University and the Douglas Mental Health University Institute examined this network and found that, among women who experienced childhood abuse, one configuration was linked to a higher risk of depression.
Senior author Patricia Silveira is professor in McGill’s Department of Psychiatry and researcher at the Douglas Mental Health University Institute.
She said: “We know childhood abuse increases the risk of depression at the population level, but at the individual level it’s much harder to predict who will actually develop the disorder.
“Our findings point to a biological mechanism that may help explain who is more at risk, at least in women.”
The work is part of efforts to identify genomic signatures linked to depression risk, which is estimated to affect around 11 per cent of Canadian adults over their lifetime.
Our findings suggest that depression risk is shaped by how genes involved in synaptic function respond to early-life experiences.
That makes synaptic function a promising target for future research,” said co-first author Carla Dalmaz, a visiting professor at the Douglas from the Universidade Federal do Rio Grande do Sul.
“Depression is diagnosed primarily based on reported symptoms, and there are still no widely accepted biological tools in routine clinical practice to identify risk early,” added co-first author Danusa Mar Arcego, a research associate at the Douglas.
“Our findings bring us a step closer to understanding why some people may be more vulnerable, opening the door to earlier support and prevention strategies.”
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