Use the search to find what you are looking for

CANCER OF UNKNOWN PRIMARY FOUNDATION

The patient pathway

Routes to diagnosis

The ‘routes to diagnosis’ for a MUO/CUP patient are varied. The most likely routes are through referral by the GP (either under what is known as the ‘Two Week Wait Urgent GP referral’ or through a ‘routine outpatient referral’. An internal consultant to consultant referral may then happen in the hospital depending on how the patient was initially routed. The most common routing for CUP patients is an emergency presentation via A&E. Research by Public Health England’s National Cancer Intelligence Network (Routes to diagnosis CUP data briefing, NCIN, 2014) shows that 57% of newly diagnosed cases of CUP, between 2006 and 2010,  presented as an emergency compared to 23% for all cancers.

Investigation & treatment

The investigation and treatment stages of a CUP patient will follow the flow shown simply in this patient pathway.  The doctors will be working on a more complex algorythm, informed by the NICE Guideline, that will give the local protocols that they will follow in detail. An example, in this case used by hospitals in the Thames Valley, can be seen here.

In addition to trying to identify everything possible about the cancer, the doctors will also be assessing overall fitness to help determine the patient’s tolerance for treatment options. Biological rather than chronological age will play a part here – for example, some 70 year olds can be mentally and physically 10 or more years younger biologically. The doctors will weigh-up ‘quality of life’ issues and patient wishes as part of determining how many, and which, tests to select. Unfortunately, we have to recognise that the management of CUP patients is complex and very variable.

If the hospital has no ‘CUP team’, or the patient with an uncertain diagnosis is directed at a site specific cancer team, patients may experience problems with the co-ordination and effective planning of investigations, treatments and holistic care through a lack of ‘ownership’ of the patient, in comparison with a patient who has an identified cancer. It is important for patients to be referred to a specialist CUP team The CUP team have experience of dealing with CUP patients and will use their expertise and experience to try and direct a patient accurately to a site specific team.

The NHS are committed to providing all cancer patients with a Key Worker (often a cancer nurse specialist) to help ease the Pathway and give support during diagnosis and treatment. CUP patients should ask if no Key Worker is allocated once cancer is diagnosed.

The patient pathway involves much anxious waiting.

In January 2014 the Wallander author, Henning Mankell, was diagnosed with metastatic cancer. In an article in the Guardian he describes the start of his ‘journey’ in a hospital in Gothenburg.  This extract focuses on the waiting:

This waiting can be hard, at times unbearable: but there is nothing one can do about it. This waiting is unavoidable, provided there are no bottlenecks to hold up the diagnostic process unnecessarily. Naturally, while waiting, one feels utterly helpless…. my thoughts are with those who may not have anybody else with whom they can share the angst associated with the waiting. People whose affliction is not clear-cut, and who may be forced to wait for an unnecessarily long time before a diagnosis is made, and treatment begun. ..There is also unnecessary waiting within cancer care, due to understaffing, bureaucracy, political shilly-shallying. We know that. ….Within cancer care, the various dimensions of waiting should never be forgotten. I am convinced that so very many people suffer completely unnecessarily because they might not even know where to turn to in order to receive support. Now, at the beginning of February, it is about a month since my cancer was discovered. In a few days’ time my treatment will start, with no holds barred. So the first waiting is now over. Now the counterattack against my tumours will begin. To expand the military image, it feels as if the cavalry will emerge from the edge of the woods and launch an all-out assault on the enemies that have invaded my body…Another period of waiting is now beginning. But unlike a month ago, I am now the one going on the offensive.

Best Supportive Care

In advanced cases the patient, in consultation with the doctors, may decide that ‘active treatment’ should not be started or should be discontinued. This places the focus on palliative care which is discused further on this page.  Some patients may receive symptom management at home with nursing support or through the hospice movement. Hospices care for patients with advanced life-threatening illness. The care is individual and holistic addressing spiritual and emotional needs as well as the physical conditions to achieve the best possible quality of life. Patients may spend short periods in a hospice to allow the specialists to help with symptom management, returning at a later date if required.