brainstrust are delivering two focus groups (Thursday 11 June and Tuesday 16 June) in partnership with researchers Dr Steffi Thust and Dr Cally Rick as part of an NIHR (National Institute for Health and Care Research) funded research study.

Background

For many people living with brain metastases, the time after radiotherapy can bring uncertainty. Changes seen on scans may be caused by the return of cancer or by a treatment side effect called radiation necrosis (RN), and telling the difference is often difficult. This uncertainty can last for months and can be deeply stressful for both individuals and families.
This online focus group will explore personal experiences of stereotactic radiosurgery (SRS) and the period afterwards. Researchers would particularly like to hear from people who experienced radiation necrosis, suspected recurrence, or uncertainty following treatment. 

Who can get involved?

People with brain mets who have received stereotactic radiosurgery (SRS) – the research team would particularly like to hear from people who have experienced radiation necrosis or recurrence following SRS.

What will happen in the focus group?

The 90 minute discussion will focus on the information you and other brain mets patients were given before and after treatment, experiences of symptoms and follow-up care, and how medical teams can better support people during periods of uncertainty.

Feedback from the workshop will help shape research aiming to improve how doctors distinguish between treatment effects and cancer recurrence more quickly and accurately.

This will be a small, supportive online conversation and every experience shared will help researchers better understand what matters most to people going through this.

Please note, the content of both focus groups on Thursday 11 June and Tuesday 16 June will be the same, and therefore you need only sign up for one of them.

Please be advised this meetup will be held via Zoom. You will receive the Zoom link and Meeting ID with your ticket.