A new pan-European report report, entitled MBC Radio Silence, reveals that people with metastatic breast cancer (MBC) feel isolated and in need of more support to deal with their diagnosis, and that there is a growing need for healthcare professionals (HCPs) to manage both the physical and the emotional demands of this terminal disease.
Initiated and funded by Eisai Europe Ltd., with advice from pan-European and national patient associations, the report presents data from a new survey, initiated and funded by the company, which indicates that many people with MBC are holding back in discussing their frustrations and fears with their doctor.
A quarter (25%) say that while they research treatment options online, they feel afraid to ask questions of their doctors. Also, when asked how they feel about initiating conversations with their doctors regarding survival, 64% feel nervous or very uncomfortable about doing so.
Jean Robinson, a UK MBC patient, said: “The resources available specifically for the needs of people with advanced disease are scarce. In the UK there is also a lot of pressure on the consultation time with your doctor, who has a lot to convey in a short time, so often it is hard for people to process it all and open-up about their feelings. This can all lead to an acute sense of isolation. Overcoming common misconceptions about MBC and having the right level of information and support could make all the difference to people.”
Similarly, just over half of the surveyed oncologists (52%) feel that their patients are holding back, indicating that conversations may not be completely open. In addition, 41% of HCPs say that their main concerns in consultations, other than availability of treatment options, is that patients seem vulnerable and anxious and they struggle to reassure them, and that they don’t have enough time to get to know and understand them.
The MBC Radio Silence report calls for a greater focus on MBC as a disease that is distinct from early-stage breast cancer in that it can be controlled but cannot currently be cured. It highlights a need for patient access to tailored information specific to MBC and a consistent multidisciplinary care team from the point of diagnosis.
Dr Alexia Bertuzzi, Medical Oncologist at Humanitas Research Hospital IRCCS and Head of Adolescents and Young Adults (AYA) with cancer, Milan, Italy, said: “The terminal nature of MBC is a difficult subject to broach for any physician. While we are expert in providing the best treatment, oncologists are also called upon to provide emotional support, yet they rarely have any formal training in this.
“Palliative and psychological care professionals are often introduced only when the patient is close to the end of their lives and so don’t have the opportunity to build the same level of knowledge and understanding of the individual. Consistently providing a multidisciplinary team from the point of diagnosis would provide immeasurable benefit to both the physician and patient.”
To coincide with the report, a new campaign funded and initiated by Eisai, called FurtherMore has been launched with advice from pan-European and national patient associations. FurtherMore showcases the lives of women with advanced breast cancer across the world through real and personal experiences, and celebrates what can be achieved when they get the support they need to live their life to the full. The campaign calls on people with MBC, and their families, to share their own unique and inspiring stories via social media with #FurtherMore and #MBC.
The hope is that, through these stories, awareness of MBC will be raised, and all people affected by the disease will be empowered to go further in sharing information with their HCP about how they truly wish to live out the remainder of their lives.