NICE tackles 'neglected' cancer
Over 10,000 patients each year in England and Wales are diagnosed with a cancer that has spread to different parts of their body from an unknown source.
Usually it's fairly easy to find the primary site of a cancer. However, for these patients it has just not been possible to tell, even after extensive tests - and little is known about which types of treatment work best.
Metastatic malignant disease of unknown primary origin, also called cancer of unknown primary origin (or CUP for short), is the fourth most common cause of death from cancer. Yet it is "very much a neglected cancer", says Professor Peter Littlejohns, NICE's Clinical and Public Health Director.
Janie Thomas, who has CUP explains: “Most patients leave the hospital, having seen their oncologist for the first or second time, knowing that they have cancer of the breast, lung, bowel or other specific part of the body.
"They can seek advice in readily available pamphlets, plough through information on the Internet or even contact one of the many groups specialising in a particular type of cancer.
"I couldn't do that. Not knowing where the cancer had come from was difficult to cope with. Where do you turn for help, support and advice? How can you make decisions about your care and treatment when there's no information available?"
Janie was a member of NICE's Guideline Development Group that has recently developed guidance recommending that NHS cancer services should be reorganised to ensure everyone with the condition receives the same level of care as other cancer patients.
This includes setting up specialist teams dedicated to their care.
"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," says Dr Andrew Fowell, Chair of the Group and a Macmillan Consultant in Palliative Medicine.
The guidance also offers advice for health professionals involved in the diagnosis and care of CUP and calls for more research into the condition.
Dr Richard Osbourne, the Group's lead clinician and a Consultant in Medical Oncology, adds: “There was a real need to examine the entire care pathway for CUP because currently, the management of this condition varies across the country.”
NICE's recommendations are supported by the National Cancer Peer Review Programme in England, the body responsible for developing quality measures for improving hospital care for cancer patients and their families.
A podcast explaining the key recommendations, the guideline itself (‘Metastatic malignant disease of unknown primary origin´ NICE clinical guideline 104) and a booklet for patients and carers are available.
This page was last updated: 05 August 2010