by ecancer reporter Audrey Nailor

Patients with advanced breast cancer (ABC), an incurable form of the disease, have long been overlooked. But what are they asking for?

To find the answer, Novartis Oncology commissioned a nationwide survey of the United Kingdom, working with the awareness-raising Here and Now campaign.

The results reveal significant support gaps for the ABC patient population, with patients reporting that their emotional, financial, social and psychological are unmet.

72% of patients stated that their emotional health has been negatively affected by the disease. The vast majority (78%) also said that their loved ones have also been negatively affected by their diagnosis.

“These results need to be listened to," says Gill Donovan, Breast Oncology Nurse Specialist and Research Fellow at Cardiff University. "Approximately half the patients have unmet needs... The wider impact of ABC is not just about the physiological effect of the disease but also encompasses the psychological, practical and spiritual aspects on both the patient and their families.”

This research is launched with an accompanying art installation. "I am not the cancer," a piece by artists John Wynne and Tim Wainwright, gives audible voice to these findings.

"I like to enable individuals to tell their stories," Wainwright says. "People whose experiences might otherwise have been overlooked, and whose voices might not have been heard."

References

Results of the 2014 Realities of living with ABC survey commissioned by Novartis Oncology in the UK with 63 respondents living with advanced breast cancer distributed by Breast Cancer Care.

Source: Novartis