Rachel Hines from Ormskirk in Lancashire was the first patient in the UK to join a pioneering national research study at The Clatterbridge Cancer Centre into the possibility of screening people with advanced HER2+ breast cancer for brain metastases – cancer that has spread to the brain.
Rachel, 47, found out she had breast cancer in June 2024 and her diagnosis came as a shock. She had a busy full-time job with Lancashire Police as well as a busy family life with her husband, two teenage children and their dog.
“I had no symptoms at all really,” she recalls, “but I always got some breast pain around my monthly cycle and it was much worse than normal. I said to my husband, ‘Gosh, the pain really is quite bad today’. Something told me to just check my breast and I felt a lump.”
Rachel’s GP sent her for a biopsy and other tests that showed she had a type of fast-growing breast cancer known as HER2+ because the cancer cells contain more of a protein called HER2 than usual.
Initially, it seemed her cancer had been caught at an early stage but she quickly developed severe back pain so was sent for a scan. Just six weeks after Rachel’s initial diagnosis came the devastating news that the cancer had already spread to her liver and bones.
“In the breast cancer world, my lump was relatively small – about 3cm – and my lymph nodes were clear so it was quite a shock to find out that my disease had already spread so significantly throughout my body without major symptoms.
“Mentally, it was very tough but it wasn’t all dark times. My chemotherapy was every three weeks so we planned as a family to do something nice together in between. We would go away to a lodge in Northumbria, for example, and bring the dog.
“Then in the New Year I finished chemo and went on to maintenance therapy, and I definitely turned a corner. You realise that you’re not curable but there are treatment options and, while it is terrifying because it’s life-limiting, it’s not immediate.”
HER2+ breast cancer has a higher risk of spreading to the brain – known as brain metastases or ‘mets’ – than most other types of breast cancer. Treatments can help people live longer but brain metastases are usually only diagnosed when they start causing serious problems.
That’s why this three-year study – supported by £219,560 funding from the charity Makes 2nds Count – has been recruiting patients with HER2+ breast cancer that has not already spread to the brain.
Around half will be given brain MRI scans every six months for a year to screen for any metastases, even if they have no symptoms. The other half will continue to receive their current care without further brain scans unless they develop symptoms.
The study is jointly led by Professor Carlo Palmieri from The Clatterbridge Cancer Centre (CCC) NHS Foundation Trust and Dr Sara Meade of University Hospitals Birmingham (UHB) NHS Foundation Trust.
Rachel explains:
I knew about the enormity of brain mets which is why I signed up for this study. I wouldn’t want my husband or children to come home one day and find me on the floor – or to be driving my kids somewhere and have an accident – because something had happened due to brain metastases I didn’t know about.
To be honest, I didn’t take the decision lightly because I don’t particularly like brain MRIs but, if something is found, it’s better to know and have it treated earlier. I know that if someone close to me was diagnosed with advanced HER+ breast cancer, I would want them to have a brain scan to check if it has spread there.
This study has got to be a positive step forward for people with HER2+ breast cancer and it’s good to be part of something that could help people in future.
The study's Co-Chief Investigator Professor Carlo Palmieri, who is a Consultant Medical Oncologist at The Clatterbridge Cancer Centre and an academic at the University of Liverpool, said:
Brain metastases can cause all sort of problems and usually they are only diagnosed when patients develop symptoms such as severe headaches, memory loss or fits.
This study is looking at the feasibility of trialling brain screening for people with advanced HER2+ breast cancer that has not spread to the brain. The screening involves them having brain MRI scans as part of their routine care instead of waiting until symptoms develop.
The study is running for three years and will involve 69 patients from a number of trial sites across the UK. This phase of the study aims to test whether it would be feasible to do a larger study to determine whether or not patients should routinely be offered brain screening.
