Radiotherapy for a brain tumour or metastasis. Your voice counts

Type of activity: Patient representative for co-design focus group

Organised by: The Precision Imaging team at the University of Nottingham

Location: Online, anywhere

Time commitment: Participate in up to 3 online workshops per year. If you prefer not to attend group meetings, it would be possible to speak to us on a 121 basis or email us with your opinion.

Payment and Expenses: Payment follows the University of Nottingham guidelines for patient and public involvement in research (£25 per hour and can be paid into your bank account or by a voucher).

Looking for: Patients and carers who have experience of radiotherapy or radiosurgery for brain metastases or other brain tumours.

Closing date: Tuesday 23 December

Researchers at the University of Nottingham are inviting patients, carers, and families to help shape a new diagnostic test that could improve care for people affected by brain metastases.

What’s the issue?

Many cancer patients now live longer, but some develop secondary brain tumours (metastases). These can be treated with targeted radiotherapy, which is often effective—but can cause a side effect called radiation necrosis (RN). RN damages healthy brain tissue and may lead to symptoms such as headaches, seizures, or stroke-like effects.

RN looks very similar to cancer recurrence on MRI scans, making it difficult for doctors to tell the difference. This can result in months of uncertainty, repeated scans, or even brain surgery. Sometimes, additional radiotherapy is given unnecessarily, which can worsen RN. This is understandably a stressful experience for patients and their families.

What’s the research about?

The research team is developing a new test to help distinguish between RN and cancer recurrence more quickly and accurately. If successful, this test could:

• Help patients receive the right treatment sooner
• Avoid unnecessary treatments
• Reduce stress and anxiety
• Lower the number of investigations

Why patient involvement matters

The researchers are committed to co-designing the project with people who have lived experience. This ensures the research reflects what matters most to patients and carers, and that future funding applications are inclusive and welcoming.

Participants will be invited to an online meeting to discuss:

• Diagnostic delays and uncertainty after cancer treatment
• Experiences of repeated imaging and unclear results
• What matters most during times of uncertainty
• What could improve the quality of life when a diagnosis is unclear

Who can take part?

• Patients who have had radiotherapy or radiosurgery for brain metastases or other brain tumours
• Family members or carers of these patients

No research or medical experience is needed. People from all backgrounds are welcome, and participants do not need to be native English speakers.

How you’ll make a difference

Research is essential to improve our understanding of diseases and find better treatments in the future, particularly in cancer. Co-designing research with people with lived experience is fundamental to ensuring it is important to the people who will benefit from it. The views and opinions of people who have lived through a medical situation (either as a patient or family member or carer) give a vital perspective that is different from clinicians or researchers. It’s essential to hear from patients and carers, so that new research happens with and for patients, shaped by their wishes.

What’s offered?

• £25 per hour for your time (paid via bank transfer or voucher)
• Support and guidance throughout
• A chance to help improve future care for others

Participants will not undergo any medical procedures - only share their views to help shape the research.

How to get involved

To find out more and register your interest contact Dr. Cally Rick at caroline.rick@nottingham.ac.uk. Please include your name and a short message confirming interest.

Register your interest