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Cancer survivors are living “in limbo” with unmet needs for care

Many long-term survivors of cancer are not receiving the necessary symptom management that they require to help them live with the consequences of their disease, its treatment, or both, according to a leading professor of palliative medicine.

Currently, there are approximately 25 million people around the world (10 million in the USA) living with cancer, and over 60% of adults newly diagnosed with cancer can expect to live at least five years or more. Marie Fallon, Professor of Palliative Medicine at the University of Edinburgh, says many of these patients are living in limbo with unmet needs that should be addressed urgently.

“Traditionally, palliative care has been aimed at one end of the spectrum where it is used to help patients near the end of their lives,” she says. “However, there is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms. Some of them will not know whether they are cured and whether the symptoms they are experiencing are treatment-related or whether they are related to recurrence of the disease that has not yet been diagnosed.

“These patients exist in a limbo. They fall between two stools: they have finished being treated by oncologists, but are not receiving the care and support from palliative care teams that patients at the end of life receive. Yet the impact of cancer and cancer treatment on the long-term health of survivors is substantial and many of them remain very symptomatic, with poor quality of life. Clearly a proportion will unfortunately be diagnosed with recurrent cancer at some point.”

The problems cancer survivors face can include pain, sexual difficulties, troublesome lymphoedema (chronic swelling caused by the failure of lymph glands to drain properly, often triggered by surgery and radiotherapy), and psychosocial problems including depression and anxiety.

To highlight these “large gaps in patient care”, Prof Fallon and John Smyth, Professor of Medical Oncology (also at the University of Edinburgh), have co-edited a special issue of the European Journal of Cancer on Palliative Care [1], timed to coincide with one of the world’s largest cancer conferences, the American Society of Clinical Oncology (ASCO) conference, which starts tomorrow (Friday 30 May) in Chicago (USA).

The EJC is the official journal of ECCO – the European CanCer Organisation – and Prof Smyth is its editor-in-chief as well as being a past president of ECCO.

“We aim to use this special issue to bridge the gap between oncology and palliative care, and to encourage integration between the two disciplines,” says Prof Fallon. “Collaborations and systems need to be developed to care for patients at all stages of their disease and not just those who have a formal diagnosis of recurrent or advanced cancer.”

In their EJC joint paper, Profs Fallon and Smyth write: “We need to develop a particular supportive care model for sick patients and traditional palliative care expertise should feed into this model. Life and illness are a continuum and our patients do not always fit into well-defined boxes. As specialists, our challenge is to accommodate this continuum rather than restrict it.”

Prof Smyth says: “Europe has led the way in the development of palliative care, which is now an increasing focus of attention in the USA.” The EJC special issue on Palliative Care will be available at ASCO and Prof Smyth will be highlighting it in discussions at the conference.

Professor Alexander M.M. Eggermont, current ECCO president, commented: “This is an important special issue of the EJC, for everyone to read and discuss its content. To be cured from cancer, but living with symptoms that are related to often complex multidisciplinary treatments involving surgery, radiation therapy and chemotherapy is already difficult enough. To reintegrate into society, resuming work full or part-time adds to the complexities and socio-psychological pressure that an ever-increasing number of ‘former-patients’ have to deal with. All this must be looked into and will need special initiatives to deal with these special and unmet needs of this population. We better start tackling these issues now as they will only increase in number and magnitude.”

Emma Mason | alfa
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