Specialist cancer teams will be tasked with improving the care and treatment of patients whose cancer has spread to other parts of the body from an unknown primary location. The re-organisation of cancer services for this group of patients is one measure being recommended by the UK’s National Institute for Health and Clinical Excellence (NICE) to tackle the current inequality in care these patients often receive compared with people who have a site-specific type of cancer.

This guideline has received the support of the National Cancer Peer Review Programme in England, which is studying the recommendations to develop a number of peer review measures. These are ‘quality measures’ that hospitals are required to follow and are assessed against with the aim of improving care for cancer patients and their families.

Professor Peter Littlejohns, NICE Clinical and Public Health Director, said: “We are pleased that the National Cancer Peer Review Programme in England is taking note of our guideline and looking to use it to improve services. This type of cancer is known as metastatic malignant disease of unknown primary origin or more commonly, cancer of unknown primary. It is very much a neglected cancer - patients generally have a poor prognosis and little is known about which types of treatment work best for them. They also tend to miss out on medical and other benefits that are given to patients with a specific type of cancer because of a lack of information, understanding and specialised services.

“It is important that patients with this form of cancer receive the same level of care that other cancer patients experience. This guideline seeks to provide a consistent, national approach to the diagnosis and management of this condition.”

It is thought over 10,000 people each year are diagnosed with cancer of unknown primary (CUP) in England and Wales but many do not receive the same level of care as other cancer patients. This new guideline aims to help the NHS provide effective and tailored care for patients with CUP. Central to this is the development of specialised teams at local, regional and national level, specifically:

- All hospitals with a cancer centre or unit should establish specialist CUP teams to support and manage the care of patients with this diagnosis. This team will be responsible for guiding patients’ care until they are referred to a consultant with expertise in a particular type of cancer, referred for palliative care alone, or are finally diagnosed with confirmed CUP.

- Specialist CUP Multi Disciplinary Teams should be set up at Network level to review the treatment and care of patients with confirmed CUP, or with complex diagnostic issues.

- Every cancer network should establish a group responsible for managing all stages of CUP.

Dr Andrew Fowell, Guideline Development Group (GDG) Chair and a Macmillan Consultant in Palliative Medicine at Eryri Hospital, North Wales, said: “Just as specialised teams help care for patients with a site-specific cancer such as breast, prostate, bowel or liver, the same needs to exist for those with CUP. These teams can provide great support for cancer patients and better one-on-one care.

"We expect some oncologists to become CUP specialists, alongside their more conventional site-specific activities. They will be supported by CUP Nurse Specialists, Palliative Care physicians, and other core diagnostic staff. These teams should be supported by their hospitals to ensure they are given sufficient time in their job plans for this specialist role and any training that may be needed."

Dr David Brooks, GDG member and Macmillan Consultant in Palliative Medicine at Chesterfield Royal Hospital, helped to establish a specialist CUP team earlier this year. He said: “Our Unknown Primary Team consists of existing members of the Upper GI Cancer and Palliative Care teams. We see one or two patients per week in a Cancer Unit that covers a population of just over 300,000 so the workload is not onerous. It is early days but we are already seeing benefits in both providing early supportive and palliative care, more effective targeting of investigations to confirm treatable disease and, in those who are not fit for treatment, stopping inappropriate tests and re-focusing care towards arranging appropriate support and palliation to enable the patient to get home.”

The guideline sets out ways in which patients’ experiences should be improved, particularly through the creation of these local CUP teams, including:

- Inpatients should be seen by a dedicated member of the CUP team by the end of the next working day after referral. Outpatients should be seen within two weeks.

- Patients should be given access to an identified CUP specialist nurse or key worker when this type of cancer is diagnosed.

- Decision aids should be developed to help patients and their carers make informed decisions about continuing diagnostic investigations and using anti-cancer treatment after CUP has been diagnosed.

The guideline also contains advice for those involved in the diagnosis and care of a patient with CUP, such as oncologists, pathologists and nurses. These recommendations include:

- Take account of prognostic factors, in particular performance status, presence of liver metastases, lactate dehydrogenase levels and serum albumin, when making decisions about further diagnostic tests and treatment.

- Explain to patients and carers if further investigations will not alter treatment options and provide appropriate emotional and psychological support.

- Offer patients with CUP the opportunity to enter clinical trials.

- If chemotherapy is given outside clinical trials, take into account the clinical and pathological characteristics of the tumour, the toxicity profile of the drugs, their ease of administration and response rate when choosing which treatment to use.

Dr Richard Osborne, GDG lead clinician and Consultant in Medical Oncology, Dorset Cancer Centre, said:“There was a real need to examine the entire care pathway for CUP because currently, the management of this condition varies across the country. It’s important that patients receive the same level of high-quality care that other cancer patients benefit from, no matter where they may live. This guideline will provide a sound basis for healthcare professionals to ensure patients are informed and their care is centred around their needs and wishes. The guideline also calls for more research to further our understanding of the disease and help ensure patients receive the most effective treatments available.”

Source: National Institute for Health and Clinical Excellence