Scotland is leading the way with an innovative service for secondary breast cancer patients.
The Patient Trials Advocate service, (PTA) is the first of its kind in the UK, and it’s bringing fresh hope to those with the incurable cancer by introducing them to clinical trials which can help to improve outcomes and extend life.
The initiative has been developed by charity Make 2nds Count which campaigns to raise awareness of, and fund research into, secondary breast cancer – a form of the disease 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.
There is evidence that early access to innovative new treatment options can improve the outcomes of men and women with secondary breast cancer and the new, bespoke service, the first of its kind in the UK, sees specialist nurses support patients and link them up with clinical trials.
The PTA scheme covers Scotland in its entirety through nurses based in Edinburgh, the Borders and the Highlands. Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who can advise about clinical trials and answer any queries, search for suitable trials and support patients in discussing them with their clinician.
“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.”
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.
One of those who knows only too well the benefits of a clinical trial is Edinburgh mum-of-four Lesley Stephen. 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 says: “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. Her aim is to support patients and families, educate and raise funds for research into the disease. So far the charity has raised more than £1million.
To find out more about the Patient Trials Advocate service visit: https://www.make2ndscount.co.uk/funding-research/patient-trials-advocate/