Scotland is 'leading the UK' in the treatment of incurable breast cancer by giving women improved access to treatments that could add years to their lives.
A new bespoke service, which is the first in the UK, offers patients with advanced breast cancer an hour-long initial consultation with specialist nurses who then search for suitable trials.
There is evidence that early access to innovative new treatment options can improve the outcomes for women and men with secondary breast cancer but evidence shows many patients will never have a conversation with their doctor about trials.
The scheme has now been rolled out to cover the whole of Scotland, with nurses based in Edinburgh, the Borders and the Highlands.
Patients are also supported to discuss trials with their oncology team as part of the Patient Trials Advocate service, (PTA) which was developed by the charity Make 2nds Count.
It funds research into secondary breast cancer, which kills 1000 women in the UK each month but remains largely unknown.
Also known as metastatic, advanced or stage IV breast cancer, it is a cancer that has spread beyond the breast to other parts of the body and can be treated but not cured. On average there are around 35,000 patients in the UK currently living with this form of the disease.
Since the service piloted last year more than 100 patients have been supported. Of those, 100% backed the initiative and 95% said they would talk to their clinician about the possibility of accessing clinical trials.
“We know that many secondary breast cancer patients have never had a conversation with their clinician about clinical trials and we want to empower them to change that through our PTA service,” says PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital.
“We want to ensure that every patient with secondary breast cancer has the knowledge and the opportunity to discuss trials as part of their treatment pathway.
“I’m delighted that the Patient Trials Advocate service is now being expanded to include the whole of Scotland.
“I’ve been working with Make 2nds Count for over a year now and I think this service really is one of a kind.
“I enjoy the opportunity to talk to many secondary breast cancer patients, sharing my knowledge with regards to available trials and guiding them to explore their options.”
When Edinburgh mum-of-four Lesley Stephen was diagnosed with stage IV breast cancer out of the blue in 2014, the disease had already spread to her lungs, liver and bones.
Two years later she was told she had run out of treatment options. But she subsequently got the chance to take part in a clinical trial and is still living with the disease six years later.
She said: “I had undergone 18 months of treatment, which was unsuccessful, when I heard of a friend who was taking part in a clinical trial.
“That inspired me and gave me hope that there just might be another option.
“I researched potential trials myself, which was not easy, and I realised that there was a lack of awareness.
“But because of the trial I took part in, I have had another six years of life I never expected to have. This just shows why the patient advocacy service is so important. People need to know that there perhaps, is another possibility out there for them.”
Make 2nds Count was founded by mum Lisa Fleming, 38, of Edinburgh, who had no previous breast cancer diagnosis, warning signs or lump when she was told she had secondary breast cancer. So far the charity has raised more than £1million.
To find out more about the Patient Trials Advocate service click here