Cancer
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.”
Changes in lymph nodes may help show which breast cancer patients face higher or lower risk of the disease spreading, researchers have found.
The findings could support more tailored care, new treatments and help more people avoid unnecessary treatment.
Dr Simon Vincent is chief scientific officer at Breast Cancer Now, which funded the research:
He said: “These findings suggest that changes to the structure of the lymph nodes are more than just a consequence of the cancer. They can also play an active role in helping breast cancer progress.
“With one person tragically dying from breast cancer every 45 minutes in the UK, we urgently need research like this so that we can better understand who is most at risk of their cancer progressing and becoming incurable. Only then we can find ways to stop it.
“With a better understanding of how lymph nodes change as breast cancer spreads, we could find new targets for future treatments for types of breast cancer that are harder to treat.”
Lymph nodes, a key part of the immune system, help the body fight infections and cancer. In breast cancer, the lymph nodes in the armpit are often the first place the disease spreads to.
At the moment, everyone with invasive breast cancer has to undergo surgery to remove lymph nodes so doctors can check for cancer cells.
Invasive breast cancer means cancer that has spread beyond where it first developed in the breast into nearby tissue.
While this is effective, it can lead to long-term side effects such as swelling of the arm, known as lymphoedema, and may be unnecessary for some patients, particularly those with early-stage disease or those whose cancer responds well to treatment.
The study analysed 331 lymph node samples from people with different types of breast cancer and compared them with healthy lymph nodes from people free from the disease.
It found that breast cancer could change the structure of a network that supports the lymph nodes.
Crucially, some of these changes could occur before doctors were able to spot any cancer cells in the network.
Some changes were linked to a better chance of survival, while others were associated with a poorer prognosis.
Dr Amy Llewellyn and Dr Kalnisha Naidoo from King’s College London, together with professor Sophie Acton at University College London, compared the 331 samples with healthy lymph nodes in people free from the disease.
They looked at fibroblastic reticular cells, known as FRCs, a group of cells in lymph nodes that provide their structure, control fluid flow and activate different immune cells.
The study showed that the structure of this FRC network could change before the cancer had spread and differed depending on the type of breast cancer, any spread and whether someone had received chemotherapy.
Chemotherapy uses medicines to kill cancer cells or slow their growth.
The researchers said the findings could help doctors better understand who is most at risk of breast cancer spreading.
Dr Llewellyn said the first large-scale analysis of FRC in human lymph node tissue from breast cancer patients was addressing the “urgent need” for a better understanding of the area’s biology.
A new ovarian cancer drug has been approved for NHS use in England, offering hundreds of women with hard-to-treat disease a life-prolonging treatment.
Elahere is the first new drug for chemotherapy-resistant ovarian cancer to be approved by the NHS for more than 20 years.
Ovarian cancer is the 18th most common type of cancer globally, affecting more than 300,000 women a year.
More than three-quarters of patients are diagnosed at an advanced stage, making the disease harder to treat.
Prof Ruth Plummer, national clinical lead for cancer drugs at NHS England, said: “This represents the most significant breakthrough in NHS treatment for these hard-to-treat ovarian cancers in over two decades – and we’re delighted it will now offer hundreds of women much-needed hope of precious extra time with their loved ones.”
Standard treatment for ovarian cancer usually involves surgery and chemotherapy, but about 80 per cent of patients with advanced disease relapse and most eventually develop resistance to chemotherapy.
According to the National Institute for Health and Care Excellence, patients with folate receptor-alpha-positive platinum-resistant epithelial cancers have until now had limited options when their tumours stop responding to standard chemotherapy.
Now NICE has approved mirvetuximab soravtansine, also known as Elahere, for patients with epithelial ovarian, peritoneal or fallopian tube cancer that has become resistant to platinum-based chemotherapy and whose tumours contain the FRα protein that the drug targets.
FRα is a protein found on the surface of some cancer cells.
NHS England said up to 400 women a year in England could benefit, in what it described as a major milestone for treatment.
Mirvetuximab soravtansine is given through a drip once every three weeks.
A global clinical trial involving eight NHS hospitals found that the treatment delayed cancer progression and prolonged survival by an average of four months, compared with chemotherapy alone, with more manageable side-effects.
Cancer progression means the disease is growing, spreading or worsening.
In 37 per cent of patients, tumours shrank by at least 30 per cent, compared with 16 per cent of those given chemotherapy.
The drug, made by AbbVie, combines a “homing” antibody, which seeks out the FRα protein on the surface of cancer cells, with a cancer-killing molecule that destroys the cell from within.
Experts said the decision was a seminal moment and could significantly improve the quality of life of affected patients.
Rachel Downing, head of policy and external affairs at Target Ovarian Cancer, said: “This is a hugely important moment for women with platinum-resistant ovarian cancer and their families, who have faced limited effective treatment options for far too long. Today’s announcement offers real hope of improved quality of life.”
Victoria Clare, chief executive of the charity Ovacome, said: “Today marks a landmark moment. Being told that platinum-based chemotherapy is no longer working can bring anxiety and uncertainty, particularly when the disease is at an advanced stage, where time and options are limited.
“This recommendation is the first in over 20 years to offer the ovarian cancer community an additional choice at a critical stage, with the potential to make a real difference to patients and their families.”
Helen Knight, director of medicines evaluation at NICE, said: “We heard clearly from patients and clinicians about the very limited options available at this stage of the disease and the substantial burden that chemotherapy places on women’s lives.
“We are pleased that, following a robust process and a new commercial arrangement with AbbVie, we are now able to recommend this treatment for NHS use.”
AI may help speed breast cancer diagnosis for high-risk women after abnormal mammograms, a study suggests.
Women with abnormal mammograms often wait weeks to learn whether they have breast cancer.
Researchers at UC San Francisco and UC Berkeley said an AI-guided workflow could help reduce that wait by quickly identifying those most likely to have the disease. Some women could move from imaging to evaluation, and sometimes biopsy, in a single day.
Dr Maggie Chung, first author of the study, said: “This is a really an exciting time.
“This moves us closer to personalised care, where we can tailor a plan so that each patient gets the right intervention at the right time.”
The study used an open-source AI model called Mirai.
The model was trained on hundreds of thousands of mammograms linked to patients’ cancer outcomes.
A mammogram is an X-ray scan of the breast used to look for signs of cancer. A biopsy involves taking a small tissue sample to test for disease.
The AI tool is designed to detect subtle patterns in screening mammograms and predict a woman’s cancer risk.
Researchers at UC San Francisco and UC Berkeley applied the model to more than 4,100 screening mammograms at Zuckerberg San Francisco General Hospital and Trauma Center.
Mirai identified 525 women, about 12.7 per cent of screened patients, as high risk.
Those patients could receive an interpretation of their mammograms immediately after the scan and have additional diagnostic imaging for suspicious areas on the same day.
Some women who needed biopsies were also able to have them on the same day.
The researchers said Mirai reduced the wait time for diagnostic evaluation from several weeks to about an hour.
For women who were ultimately diagnosed with breast cancer, it reduced the average wait for biopsy from more than two months to fewer than 10 days.
The researchers stressed that Mirai does not replace radiologists or make diagnoses on its own.
Instead, it acts as a triage tool to help physicians identify the patients who can benefit most from accelerated care.
The team analysed more than 114,000 archival mammograms before launching the programme, to ensure the model would capture enough high-risk patients without overloading the clinic with too many expedited evaluations.
The researchers said they hope AI will support a more personalised approach to breast cancer screening tailored to each patient’s breast cancer risk.
Chung said: “Right now, many women follow the same screening schedule but their individual risk can be very different.
“AI risk assessment gives us the chance to identify the women most likely to benefit from expedited care and get them what they need.”
Adam Yala, senior author of the study and a data scientist at UC Berkeley, said: “This is a powerful example of how AI can be a collaborative partner for physicians.
“It shows how we can improve care when we bring clinicians and data scientists together to design these systems.”
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