A stage 4/metastatic breast cancer (MBC) diagnosis is devastating for patients and their loved ones. While research has made incredible strides to yield new treatments, improve outcomes, and prolong life after an MBC diagnosis, the disease can only be treated, but not cured. It is the form that takes lives.
Sharing an MBC diagnosis with family and friends can, unfortunately, be traumatic for patients, says BCRF investigator Dame Lesley Fallowfield, professor of psycho-oncology at Brighton and Sussex Medical School and director of the Sussex Health Outcomes Research and Education in Cancer (SHORE-C). Even when a person’s loved ones care deeply, they may unintentionally say things that are hurtful or isolating.
Dame Lesley, a pioneer in the field of psycho-oncology, and her team at SHORE-C conducted a survey of MBC patients examining their experiences, quality of life, gaps in information, care, and support.
The team found that, compared to patients with earlier-stage breast cancer, patients with advanced disease reported a lack of understanding about metastatic disease, treatments, trials, and their prognosis along with considerable burdens to their own and their families’ wellbeing and financial situations. Patients also noted that they felt less supported by healthcare professionals than during earlier diagnoses and that their loved ones often didn’t know what how best to help or what to say.
With BCRF support, Dame Lesley and her team will be using the powerful and often quite moving data collected to produce educational materials for all involved in caring and supporting patients. They have just released a new film for families and friends that features real quotes and anecdotes from MBC patients—voiced by five actors—along with discussions between Dame Lesley and Scotland-based patient advocate Lesley Stephen, who has lived with MBC for more than five years.
Next, the team will create an educational program for healthcare professionals based on survey findings to highlight ways providers help or hinder patients’ understanding, decision making, and coping with MBC.
Dame Lesley’s BCRF grant is supported by The Estée Lauder Companies’ Brands Award in Memory of Evelyn H. Lauder.
“I’m very proud and grateful to have the support of BCRF & the Estée Lauder Companies for my team’s research,” Dame Lesley said. “Other grantees have made amazing advances increasing our scientific understanding about breast cancer and in the development of new treatments that one day will irradicate this horrible disease. Meanwhile, many people worldwide are still living with breast cancer so the psychosocial research we conduct can improve the quality of their lives through better understanding of the impact of the diagnosis and treatment and the provision of good quality information, education, and support services.”
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