Giving hope to those affected
by secondary breast cancer
1st December 2025 by Sarah Thomas
At Make 2nds Count, we believe every patient living with secondary (metastatic) breast cancer should have fair access to clinical trials as a valid part of their treatment options. Yet we hear from our community that this isn’t the reality for many.
A newly published UK study in The Breast, funded by Make 2nds Count and co-developed with patients, gives the clearest picture yet of what people with secondary breast cancer know, feel and experience when it comes to clinical trials. More than 750 patients from across the UK took part, making this the largest study of its kind.
The results reinforce exactly why improving access to clinical trials remains one of our core missions.
One of the clearest messages from the study is that people are keen to be involved in research.
96% said they would take part in a trial to access a new treatment
93% wanted to help future patients
81% wanted to take a more active role in their own care
But despite this enthusiasm, most had never been invited to join a trial.
In fact:
77% had never been asked about trial participation
Almost 70% had to ask about trials themselves
Only 14% had ever taken part in a clinical trial
This gap between what patients want and the opportunities they’re given is at the heart of the inequality we’re working to change.
Patients described feeling “written off” once they reached a stage 4 diagnosis, with one saying: “It almost feels like metastatic breast cancer is a bit written off because we can’t survive this.”
Patients in the study told us repeatedly that finding understandable, up-to-date information about trials is difficult. They described:
confusing medical jargon
no one checking if they understood information
a lack of specialist nurses for secondary breast cancer
spending hours searching the internet without clear answers
One patient said: “I would love somewhere to go for clinical trial information in layman’s language… it’s so hard to find your way through the fog.”
Another said: “There is literally nothing in the hospital environment. Some people don’t even know clinical trials exist.”
It’s no surprise that 87% said they would use a patient-friendly clinical trials registry if one existed.
We didn’t let this research sit on a shelf. It inspired action.
In response to the clear call for better information and guidance, we developed the Make 2nds Count Clinical Trials Service - the first patient-centred support service of its kind in the UK dedicated to secondary breast cancer trials.
It provides:
1:1 support for patients wishing to explore clinical trials as part of their treatment pathway
accessible information in plain language
guidance on questions to ask clinicians
a personalised search of UK trials databases
Since launching, it has supported over 1,000 people and has become a vital stepping stone between patients and clinical research.
Even when patients know about trials, many face obstacles:
Strict eligibility rules can exclude people who have lived with secondary breast cancer for longer or had multiple treatment lines
Some trials require biopsies or tests that may be difficult to repeat
Only 13% of participants who took part in trials had travel costs covered
More than half said they would be more willing to travel if expenses were reimbursed
Patients also described feeling that secondary breast cancer “never gets the attention it needs”, despite the progress happening in research.
This feedback led us to take the next step: speaking directly to healthcare professionals.
Building on this study, we held roundtables with clinicians from across the UK to understand their experiences of supporting patients into trials.
They spoke about:
limited trial availability in many regions
heavy workloads and not enough time to have trial conversations
inconsistent national systems for sharing trial information
a lack of clinical trials infrastructure in certain hospitals
concerns about offering non-local trials to patients with high symptom burden
We’re using these insights to help us push for systemic change based on what both patients and healthcare professionals are seeing every day.
One especially powerful theme from the interviews was the emotional side of research. Patients said they want:
more positive stories about people living well on trials
more visibility of people with secondary breast cancer in the media and online
more opportunities to give input into research that affects them
As one participant put it: “I survive on the knowledge that other people are doing well. It makes a lot of difference to a lot of us.”
This is why we continue to champion patient voices in every research study we support.
This study sends a clear, united message:
People with secondary breast cancer want to take part in research.
They want to access new treatments.
They want to contribute to progress.
But right now, too many face barriers - and too few are given the chance.
Make 2nds Count is committed to changing this through:
advocacy for fair trial access across the UK
improving trial information and awareness
working alongside researchers, clinicians and policymakers
amplifying patient voices in research design
Together, we can create a future where every patient is given the opportunity to explore all of their treatment options - including clinical trials.
By Dr Sarah Thomas, Director of Research & Programmes at Make 2nds Count
Citation: A UK study of the experiences, information needs and attitudes to clinical research among patients living with secondary breast cancer in the UK: A prospective co-developed study. Stephen, Lesley et al. The Breast, Volume 85, 104644
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