“Am I receiving the right treatment for my cancer?”

This question weighs heavily on the minds of all cancer patients. In breast cancer, the increase in categorization of cancer subtypes and rigorous clinical trials have led to clearer guidelines as to which treatments pathways would be most beneficial, particularly if the cancer has not spread beyond the breast and local lymph nodes.

What if my cancer has spread?

Metastatic breast cancer (cancer that has spread beyond the breast) is more challenging. Although treatments for metastatic breast cancer have improved dramatically over the past decade, increasing in both number and complexity, clinical trials often exclude certain groups of patients to help standardize treatments.

Brain metastasis is often one of these exclusion criteria. As breast cancer patients survive for longer, and with the increasing use of brain imaging in the investigation of symptoms, the rate of brain metastasis detection is rising. This raises the question, “are we doing the right things for this particular patient group?”

The brain metastasis dilemma

So, imagine finding out that you have breast cancer and that it has spread to your brain. You may have been diagnosed coincidentally, but more often have been suffering from symptoms including physical impairment, personality changes and seizures. Your doctor has sat you down and explained the treatments and you would like to know the outcomes. I have been this doctor and I know this is a difficult discussion.

Historically the outcomes are poor, but the availability of new systemic agents and advanced radiotherapy techniques mean that patients may survive and remain healthy with a brain metastasis for longer. We just don’t have the real-world UK data for this. Furthermore, we need to be sure that the quality of care for these patients remains at a high standard.

This is where PRIMROSE comes in.

The PRIMROSE audit

PRIMROSE is a multi-center prospective audit that will capture the current management of breast cancer patients with central nervous system (CNS) disease across the UK. With this data, we aim to ensure that appropriate treatments are being offered to breast cancer patients with CNS disease. Furthermore, it will be used to tease out variations in care that could potentially be influenced by age, tumor type, geography and ethnicity.

How does it work?

Patients who have been diagnosed with brain metastases and breast cancer are anonymously entered onto a secure GDPR-compliant database. Their treatments and responses to these treatments are recorded contemporaneously. Following recruitment, we will map the treatment pathways of these patients to find out whether patients have been receiving optimal care and outcomes.

Since the audit launch in January 2020, and despite the setbacks of COVID-19, PRIMROSE is continuing to collect important data. Prospective recruitment will continue until December 2022.

Who can join?

This collaborative, junior doctor-led project has inspired an engaging multi-professional team, encompassing medical students, nurses, hospital consultants and database managers, with the ultimate goal of improving the lives of breast cancer patients.

We are always looking for new collaborators and welcome any interested parties to get in touch with us so we can help set up your PRIMROSE audit locally. For further information about PRIMROSE, please contact primrose@liverpool.ac.uk.

Acknowledgements

PRIMROSE is being run by the UK Breast Cancer Trainees Research Collaborative Group (BCTRCG), with support from the British Neurosurgical Trainee Research Collaborative (BNTRC) and the British Oncology Network for Undergraduate Societies (BONUS). The audit is sponsored by the University of Liverpool and oversight is provided by the Liverpool Clinical Trials Centre.