A PIONEERING Scots initiative to help secondary breast cancer patients is being rolled out UK-wide.
The Patient Trials Advocate service (PTA) introduces people with the incurable disease to clinical trials, which can help to improve outcomes and extend life.
Since it began in Scotland last year, it has received a 100% approval rating and brought fresh hope to patients living with a largely unknown type of breast cancer which kills 1000 women in the UK each month.
The initiative was developed by the charity Make 2nds Count, which campaigns to raise awareness of, and fund research into secondary breast cancer – also known as metastatic, advanced or stage IV breast cancer – a form of the disease which has spread beyond the breast to other parts of the body.
On average, there are around 35,000 patients in the UK living with this form of cancer.
There is evidence that early access to innovative new treatment options can improve outcomes for men and women, and the bespoke service sees specialist nurses support patients and link them up with clinical trials.
The PTA scheme, which was the first of its kind in the UK, initially covered Scotland through nurses based in Edinburgh, the Borders and the Highlands.
Now the team is extending the service across England, Wales and Northern Ireland.
Patients have an initial one-to-one, hour-long phone consultation with one of the nurses, who advises about clinical trials and answers any queries, along with searching for suitable trials and supporting patients in discussing them with their clinician.
PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital, said: “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.
“Sourcing the right information about available trials and understanding the association’s complex information can be very difficult.
“But we aim to make every patient with secondary breast cancer aware of them and give them the knowledge and the potential to participate in trials as part of their treatment pathway.
“This service really is one-of-a-kind, and sharing our knowledge and guiding patients to help them explore their options is a real privilege.”
Edinburgh mother-of-four Lesley Stephen was diagnosed with stage IV breast cancer out of the blue in 2014, and 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 more than six years later.
She said: “I had 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.
“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.”
For more about the service, click here.
