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The ‘routes to diagnosis’ for someone presenting with metastatic malignant disease of unknown primary origin (MUO) – or, put more simply, uncertain cancer – are varied.
It may be by GP referral (either through what is known as the ‘Two Week Wait Urgent GP referral’ or through a ‘routine outpatient referral’ to hospital. The NHS’s Rapid Diagnostic Centres (RDCs) or ‘one stop shops’ that are coming on stream in 2020 will become an additional route. It is also possible that a patient may be referred initially to a site specific consultant, or Multi-Disciplinary Team (MDT), before referral to the CUP team.
The most common routing for CUP patients is an emergency presentation via A&E to Acute Oncology Services. Research has shown that 57% of newly diagnosed cases of CUP present as an emergency compared to 23% for all cancers. (Routes to diagnosis CUP data briefing, NCIN, 2014)
Whether through GP referral of emergency presentation, it is important for the patient, who does not show evidence of an obvious anatomical primary, to come under a specialist CUP team without delay. The CUP team have experience of dealing with such patients and will use their expertise and experience to try and direct a patient accurately to a site specific team. If the evidence of a site specific cancer does not become apparent quickly then the patient will stay under the care of the CUP team. Every NHS Trust in England, Wales and Northern Ireland is required to have a CUP team.
The investigation and treatment stages of a CUP patient will probably follow this simple flow chart. The doctors will be working on a more complex algorithm, informed by the NICE Guideline for CUP and local CUP team protocols. An example of a local protocol, in this case used by London Cancer, can be seen here. Another one, for Thames Valley, is shown in the quick links column – on the top right of the screen on a desktop and probably at the page bottom on a mobile. (These are shown to give the reader an idea of the detailed process and may not be updated.)
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 can be very variable.
The variability often happens if the patient with an uncertain diagnosis is directed at a site specific cancer team and no obvious primary starting point for the metastatic cancer is found immediately. Unless the patient is transferred to the CUP 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.
Key workers. The NHS are committed to providing all cancer patients with a Key Worker (often a cancer nurse specialist or CNS) to help ease the Pathway and give support during diagnosis and treatment. CUP CNSs are hugely valued by CUP patients and provide information, support and guidance, helping to reduce concerns and manage the complexity of diagnosis and treatment pathways. 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.
In cases of advanced cancer the patient, in consultation with the doctors, may decide that ‘active treatment’ should not be started or should be discontinued at a point in the Pathway. This places the focus on palliative care which is discussed 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.