Health experts have issued a five-point call to action aimed at raising awareness among policymakers and healthcare professionals of the realities of living with advanced breast cancer.
Globally, around 1.4 million women are diagnosed with breast cancer every year. About 30 per cent of women with early breast cancer will develop advanced breast cancer (ABC).
ABC refers to metastatic breast cancer, where the disease spreads to different parts of the body, typically the bones, liver, lungs and brain. ABC is currently incurable.
The call to action follows recent research highlighting that there is little public understanding of ABC and that women with the disease often feel forgotten and socially isolated.
Dr Victoria Harmer, a specialist breast care clinical nurse at Imperial College healthcare NHS Trust in the UK told the Parliament Magazine, "All the evidence we have illustrates a unique need for women when they are diagnosed with ABC and that this is entirely different from an early breast cancer diagnosis."
Harmer, who is also a Trustee for ABC a charity dedicated to tackling the disease, said women diagnosed with ABC don’t feel they receive the same level of family support compared to when they were diagnosed with early breast cancer. "They have little access to support from women in similar situations - peer support is something that we know, from the literature and evidence, can really assist".
It was in response to these issues and to also measure the true extent of the psychological needs of women living with ABC that the Here & Now awareness-raising campaign was established by Pharmaceutical group Novartis Oncology in 2013.
A series of awareness-raising activities by the Here & Now campaign, including an event at the European Parliament in 2015, resulted in MEPs backing a written declaration on breast cancer that included a specific reference to tackling metastatic breast cancer.
Entitled, "Addressing the unmet need in advanced breast cancer", the call to action identifies five key priorities that the campaigners believe need to be addressed to improve the level of care and support received by women with ABC.
The call's priorities were driven by a series of surveys commissioned by the campaign group, covering the general public, patients, carers and healthcare professionals.
Key findings indicated a clear knowledge gap generally around ABC. "Although three in five people know someone who has or has had breast cancer, 43 per cent are unable to define what ABC means," said Harmer.
A poll of patients and care providers revealed an often wretched world where women diagnosed with ABC felt invisible and unwanted with more than half of those with the disease saying they felt they were viewed negatively by society, with one patient saying, "people tend to shy away from me when they find out about my disease".
Harmer, who is also a Here & Now campaign ambassador, said the survey results clearly illustrated the unmet needs of women with ABC. "Over a third of those asked stated they had lost confidence or a sense of personal identity since their diagnosis."
The patients' perceptions were backed by findings from a poll of physicians and nurses: an overwhelming majority of which agreed that ABC had a significant impact on a patient's' emotional wellbeing.
Around 60 per cent also agreed that patients with ABC often feel socially isolated.
"Over a third of those asked stated they had lost confidence or a sense of personal identity since their diagnosis of ABC," said Harmer.
"[However] knowing this detail and the rest of the information from the surveys is not enough. Change must happen and clearly we have much to do, but this is a great opportunity to get it right and do better for our patients, their families and caregivers."
The five key issues in the call to action aim to raise awareness of the problems and patient needs surrounding the disease, provide greater understanding of the barriers facing ABC patients, improve their level of care, support and access to information and increase the number of specialised breast cancer units across Europe.
"The call to action is primarily aimed at policy makers and healthcare professionals across Europe…and is a way of illuminating the situation and highlighting issues surrounding the treatment and management of people with ABC", said Harmer.
"If we can dig deeper and gain a richer understanding of the issues that surround a diagnosis and ongoing management, this should furnish us with more of an insight into how we can assist and implement change in order to increase the quality of patient care."
Campaign backers Novartis are currently chasing approval for a new breast cancer treatment, following the recent announcement that clinical trials on their experimental breast cancer treatment LEE011 had ended early after hitting its goals of extending patient life-expectancy.
The company also announced that it intends to divide its pharmaceuticals division into two, with one focusing exclusively on its growing oncology business.
Download the pan-European call to action: Addressing the unmet need in advanced breast cancer