2. Elevate Management of Pain and Other Symptoms: Core Parts of the Cancer Patient Pathway

Further to psychological impacts of cancer, cancer patients and survivors are also faced with a wide range of physical problems, as a consequence either of the cancer itself, or of the cancer treatment(s) they receive(d), creating a tremendous burden at every stage of the disease⁴⁸. In the context of improvements in cancer survival and of the need for health systems to move their focus from a cure vs end-of-life care dichotomy to the achievement of optimal quality of life throughout the entire cancer journey, particular attention is needed to the steeply increasing challenge of those physical problems affecting patients and survivors in the long term, much beyond the end of their active treatment phase. Significant gaps exist in respect of their management, in terms of knowledge, practice and infrastructure. Furthermore, the continuous evolutions in cancer treatment technologies and the development of new medical agents, such as immunotherapies, are likely to create completely new toxicities and symptoms in long-term cancer patients and survivors, which will require appropriate and specific management by health systems.

These long-lasting physical problems are very variable, and relate to the type of cancer, the type of cancer treatment(s), and coexisting risk factors. They can affect every organ and function of the patient. Prominent examples include chronic pain, chronic fatigue, difficulties to speak, sexual dysfunction and gastrointestinal and urinary disorders⁴⁹. These problems may either date from the time of the cancer treatment, such as immunosuppression due to chemotherapy and neuropathic effects of cancer surgery, or may be a so-called “late effect” of the cancer treatment, such as salivary gland dysfunction (“dry mouth”) caused by radiotherapy⁵⁰ and autoimmune or autoinflammatory disorders arising from immunotherapy⁵¹. Collectively, for many patients these problems have a significant impact on their quality of life, with resultant psychological and social complications.

Of all such symptoms, pain is one of those which cancer patients and survivors fear and experience the most. According to recent studies, it affects more than half of patients receiving cancer treatment⁵² and more than one-third of adult cancer survivors^53,54. Uncontrolled cancer pain has a huge impact on patients’ quality of life, significant psychological, social and health economic implications (for the patients, their families, and the health system), and may also have a negative impact on patient survival (and vice versa). Moreover, inadequate management of cancer pain may also result in morbidity, and occasionally in mortality, notably due to adverse effects of opioid analgesics. However, at least one-third of cancer patients currently have inadequate pain control⁵⁵. While some patients have inherently difficult-to-control pain, in many cases the problem relates to a reversible barrier to pain control (e.g. inadequate assessment/re-assessment of patients’ pain, limited availability of pain services, restricted availability or access to opioid analgesics and other drugs used for the management of pain)⁵⁶.

The management of long-term physical impacts of cancer requires the development of specialist symptom control, supportive and palliative care services, ensuring access of cancer patients to:

• Early, systematic and regularly updated assessment for physical impacts of cancer and cancer treatment; and

• Treatment of those long-term cancer patients and survivors with severe, life-changing physical problems through specific medical expertise possessed by highly trained supportive and palliative care specialists.

This relates to specificities in both the biological mechanisms underlying the presentation of these symptoms in the context of cancer survivorship, and in the particular accompanying health condition of long-term cancer patients and cancer survivors. For instance, chronic cancer pain encountered by long-term cancer patients and cancer survivors differs significantly from acute cancer pain typically faced by patients with an advanced, metastatic or terminal disease. Treatments that are effective for acute cancer pain may be less effective, and/or less well tolerated in the former case. As a result, the management of chronic, difficult-to-control, cancer pain is known to require individualised, multimodal interventions, provided by relevant specialists⁵⁷. Furthermore, severe symptoms most often differ radically between patient populations, according to age, cancer type, or received treatment, further highlighting the need for specialist services and workforce to appropriately treat them. 

However, in many cases the specialist workforce possessing this particular medical expertise is not available to cancer patients, due to systemic gaps in recognition, training and investment in cancer supportive care services, so that there is persisting inequitable access to supportive and palliative care across Europe.