Diagnosis
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.”
Menopause is often absent from women’s electronic health records, a study of nearly 396,000 women has found.
Researchers found menopause appeared almost seven times more often in participant surveys than in electronic health records (EHRs).
The findings suggest important reproductive health information, including age at menopause, may often be missing from health records used for research.
Audrey Hendricks, associate professor of bioinformatics at CU Anschutz and the study’s principal investigator, said: “Ultimately, we cannot study what we do not measure. We cannot treat what we do not know.
“Menopause has enormous implications for women’s health, but if we don’t consistently capture when menopause occurs and other important reproductive health information, we limit our ability to understand how this transition affects disease risk and health outcomes.”
Researchers at the University of Colorado Anschutz analysed data from women taking part in the National Institutes of Health’s All of Us Research Program.
They compared menopause information reported by participants in surveys with menopause diagnoses recorded in their electronic health records.
Around 193,000 menopause observations were identified in survey data, compared with approximately 28,000 diagnoses in EHR data.
Menopause was documented in electronic health records for only about 7 per cent of women in the dataset.
Nearly all participants with a menopause diagnosis recorded in their EHR also reported menopause in survey data. However, substantially fewer women had menopause documented in their health records.
Other important information was also frequently unavailable, including age at menopause, which researchers may use when examining links between menopause and chronic disease risk.
Menopause is a physiological transition that can affect cardiometabolic health and many other aspects of women’s health.
Researchers said relatively little is known about how factors including the timing and type of menopause influence health outcomes across diverse populations.
Large-scale programmes such as All of Us combine participant surveys, electronic health records and genomic data, but menopause-related research depends on relevant reproductive health information being available.
Missing menopause information can make it harder to investigate how the transition relates to health and disease.
The findings may also help researchers using All of Us data define menopause-related study populations, design studies and estimate how many participants are needed.
Hendricks said: “We have an enormous opportunity to use large-scale datasets to understand women’s health across the menopause transition and to identify who may be at greater risk for disease.
“But we need to make sure that the information researchers need is actually being collected.
“We must do a better job of capturing women’s health information, including reproductive health and measures related to menopause.”
Researchers said more complete and consistent collection of menopause and reproductive health information could help future studies examine factors such as age at menopause and their relationship with disease risk and health outcomes.
The FDA has granted accelerated approval to AstraZeneca drug Etcamah for certain adults with advanced breast cancer carrying an ESR1 mutation.
Etcamah, also known as camizestrant, was approved in combination with a CDK4/6 inhibitor, either abemaciclib, palbociclib or ribociclib.
The treatment is for adults with hormone receptor-positive, HER2-negative, locally advanced or metastatic breast cancer when an estrogen receptor-1 (ESR1) mutation is detected during aromatase inhibitor and CDK4/6 inhibitor therapy using an FDA-authorised test.
ESR1 mutations are acquired resistance mutations that tumours may develop during treatment with aromatase inhibitors, a type of endocrine therapy commonly used as a front-line treatment for locally advanced or metastatic breast cancer.
Fewer than 5 per cent of patients have the mutation when HR-positive metastatic breast cancer is diagnosed, according to the FDA. After disease progression on an aromatase inhibitor, nearly 40 per cent have the mutation.
Acting FDA commissioner Kyle Diamantas said: “Women living with metastatic breast cancer face an uphill battle as their tumors continuously evolve to escape treatment.
“We owe them every weapon in our arsenal.
“Today’s approval delivers a win to these patients by granting them a targeted therapy designed specifically to overcome resistance, giving them more time before their disease progresses.”
The accelerated approval programme allows earlier approval of drugs that treat serious conditions and fill an unmet medical need based on surrogate or intermediate endpoints.
For Etcamah, approval was based on how long patients lived without their disease worsening, measured from when the resistance mutation was first detected in their blood.
The FDA said it has not yet been confirmed whether intervening when the mutation is detected, rather than waiting until disease progression is confirmed, results in a clinically meaningful benefit. Confirmatory studies are therefore required to verify and describe clinical benefit.
Angelo de Claro, director of the FDA’s Oncology Center of Excellence, said: “I commend both the FDA and the sponsor for their commitment to advancing cancer care and securing this accelerated approval.
“This marks the first FDA approval of a cancer therapy guided by the detection of a resistance mutation in circulating tumor DNA (ctDNA) before imaging tests show that the disease is progressing.
“But additional evidence is needed to confirm clinical benefit.”
Circulating tumour DNA, or ctDNA, consists of small pieces of tumour DNA released into the blood and can allow earlier molecular detection of resistance mutations.
The FDA also authorised the Guardant360 CDx assay as a companion diagnostic to identify patients with breast cancer who have ESR1 mutations for treatment with camizestrant.
Efficacy was assessed in a clinical trial comparing a switch to Etcamah plus a CDK4/6 inhibitor with continued treatment using an aromatase inhibitor plus a CDK4/6 inhibitor.
Estimated median progression-free survival was 16 months in the Etcamah group, compared with 9.2 months in the aromatase inhibitor group.
Etcamah’s prescribing information includes a boxed warning about the risk of irregular heart rhythm when taken with certain other medicines. It also includes warnings about an abnormally slow heart rate and potential harm to an unborn baby.
The FDA convened its Oncologic Drugs Advisory Committee for the application on 30 April 2026.
Four leading cardiovascular health groups have agreed new guidance for healthcare professionals assessing patients with suspected heart attacks.
Historically, some less common forms of heart attack, which evidence shows affect women far more than men, have been classified as less important, with treatment and care often worse as a result.
Experts said women had been receiving less effective treatments that did not always target the specific cause of their heart attack and could even make them more unwell.
The changes were announced in Munich on the opening day of the annual congress of the European Society of Cardiology (ESC).
Professor Bryan Williams, chief scientific and medical officer of the British Heart Foundation, said: “This is a landmark moment, a radical shift in how we define and diagnose heart attacks worldwide which will transform people’s care.
“For decades, women have missed out on accurate diagnoses and treatment.
“This focus on finding less common causes of heart attacks, which predominantly affect women, should help to change that. It could be life-changing for huge numbers of women in the UK and worldwide.”
The new guidance upgrades three types of heart attack that can be up to 10 times more common in women and are often caused by childbirth, exercise and emotional stress.
The most serious cases, previously known as “type 1” and now classed as “primary” heart attacks, had previously prioritised those caused by a clot blocking blood flow to the heart.
Other forms can involve reduced blood flow for different reasons, including the tightening or tearing of coronary arteries. These can be more likely to be missed or treated less urgently.
The guidance also introduces a lower diagnostic threshold for women based on levels of troponin, a protein released into the blood when the heart is injured and damaged.
Previously, women were expected to meet the same troponin threshold as men to receive a diagnosis.
Williams said the streamlined heart attack categories would also help patients understand the cause of their heart attack and what comes next.
The three upgraded types are coronary artery spasm, coronary embolism and spontaneous coronary artery dissection (SCAD).
Coronary artery spasm involves the tightening of an artery, which can deprive the heart muscle of blood and oxygen. It can be caused by emotional stress, exercise or extreme cold.
Coronary embolism occurs when a blood clot or fatty deposit travels to a coronary artery and causes a blockage.
SCAD is caused by a tear in a coronary artery. Around 80 per cent of cases occur in women, and it often happens during or soon after pregnancy.
Professor Nicholas Mills, a cardiologist at the University of Edinburgh who led the international taskforce behind the guidance, said it was “the first time that we’ve had a truly global approach to aligning how we diagnose what is probably the most important diagnosis there is”.
He said: “It kills so many people, and we’ve never got everyone together around the world to agree how we’re going to describe it, classify it, explain it to our patients.
“Our job now is to implement this as widely as possible. It’s just as relevant for the UK as it is for any other country around the world. It is a revolution. It’s going to make care better for patients.”
Mills said there had been “unintended systematic bias against women”, including through the use of the key blood test for diagnosing heart attacks at an average level, which picks up all men but misses some women.
He said: “This is used for all types of heart attack in every emergency department in the world, and we want to make sure that it’s used correctly.”
The guidance was drawn up by the ESC, the American College of Cardiology, the American Heart Association and the World Heart Federation.
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