The support provided for women with secondary breast cancer is inadequate and urgent steps are needed to provide better services for patients with this progressive incurable disease, which kills half a million women worldwide every year. Those are the key recommendations to emerge from a trio of papers in the September issue of the European Journal of Cancer Care.
Fifty-seven per cent of breast care nurses who took part in a UK survey for Breast Cancer Care told researchers that they felt there was inadequate provision for women whose cancer has spread to other organs, most commonly the bones, lungs, liver and brain. Many also said that they felt ill equipped to care for them.
Forty per cent of the 276 nurses who responded said that they saw caring for women with secondary breast cancer as part of their role, but the majority said that their time was dominated by meeting the needs of patients with primary breast cancer.
Fourteen per cent said that their organisation had a secondary breast care nurse specialist in post and 19 per cent said there was a nurse responsible for secondary breast cancer care. However, eight per cent said that their organisation had no nurses providing care for women with secondary breast cancer and less than 13 per cent of the nurses providing specialist care worked full-time.
A strong theme to emerge from the survey was the fact that breast care nurses felt that their time was dominated by meeting the needs of patients with primary breast cancer.
Many stated that they would like to offer a better support to women with secondary breast cancer, but felt they lacked knowledge and experience of the physical and emotional effects of this progressive disease and didn't have the staff numbers or time available to provide an effective service.
"It is clear that nursing support for UK women with secondary breast cancer is currently inadequate, although many health professionals are aware of the problem and are beginning to address it" says lead author Elizabeth Reed, a nurse and Research Officer for the charity.
"Breast Cancer Care wants to see well structured, co-ordinated services, dedicated resources and better training and support for those nurses who are already providing this specialist care and those looking to develop services for women with secondary breast cancer.
"Any patient with secondary breast cancer should have the assurance that they can access a specialist nurse who is equipped to give them the support they need."
The paper, which is being published ahead of the UK's first ever secondary breast cancer awareness day, held by Breast Cancer Care on October 13, is accompanied by an international literature review and editorial.
Uncertainty, lack of control and poor emotional functioning are some of the main issues facing women with secondary breast cancer, according to the literature review, which was carried out by a Clinical Nurse Specialist in Secondary Breast Cancer. It indicates that living with secondary breast cancer is a complex experience that is influenced by a large number of factors. However many of these factors are under-researched, compared to those affecting women diagnosed with primary breast cancer, and women with secondary breast cancer need a great deal more support than they currently receive.
The editorial, by a Professor of Breast Cancer Medicine, states that the true impact of coping with an incurable condition and uncertain future is something that often goes unrecognised by healthcare professionals. It stresses that training specialist nurses for patients diagnosed with secondary breast cancer must be an urgent priority. This will enable these women to receive the same level of support as women with primary breast cancer and benefit from a longer and better quality of life.