CANCER OF UNKNOWN PRIMARY FOUNDATION
Treatment decisions, prognosis, palliative care
CUP diagnosis requires close collaboration between clinical experts: oncologists, radiologists, pathologists, nurses and palliative care experts – the CUP team. They will examine the patient and re-examine the patient’s medical history, physical findings, and the results of the laboratory data before deciding on treatment options.
There are a number of options open to the cancer specialist (the oncologist) once he or she has pulled together all the available evidence. The oncologist will weigh-up the treatment options in relation to the evidence, the patient’s resilience and quality of life factors (and if one chemo regime has been tried, its responsiveness in determining whether to try another). Possible routes include chemotherapy, radiotherapy, hormonal treatment, immunotherapy, and sometimes surgery. These are explained in more detail on this page .
Suitability for treatment, and the type of treatment, is usually assessed by the Multi-Disciplinary Team (MDT) that the patient is being supervised by – usually the CUP MDT.
For someone who is frail the treatment options may sound very intimidating. As well as the positives, the oncologist will consider with the patient the negatives of investigation and treatment, and alternative options such as palliative care without invasive treatment.
Although recommendations may be made, the decisions to undergo tests and treatment will be made by the patient.
Patient Decision Aids
Making decisions about tests, treatment, research involvement, and palliative care can be bewildering for the CUP patient. In conjunction with Sue Ryder we have developed a series of simple-to-use Patient Decision Aids to help with these difficult decisions. The document can be viewed or downloaded by clicking on the link.
The maxim for the NHS patient is: ‘no decision about me, without me’. The patient, and where appropriate, with the patient’s family, make the decision about treatment after hearing the recommendations of the CUP team.
More information to help with decision-making
A cancer diagnosis is life changing. Patients and families need access to high quality information and support to cope with cancer and its treatment. It will be the intention of the providers to do this with dignity and respect; encouraging the patient’s involvement in decisions related to their treatment and care.
The CUP patient and the doctors treating the patient face a number of treatment dilemmas in the course of the pathway which are described in the link. The article is written primarily for the medical profession and is only suitable for patients and carers who want an in-depth understanding of the condition and the associated difficulties.
Research trials
Some patients may be invited to join a CUP trial exploring particular chemotherapy regimens or diagnostic techniques. Because there is a trial, and because CUP is so heterogeneous (many varieties) it should not be assumed automatically that going on the trial is in the best interests of the patient. Here is a short video about how trials in general are conducted.
Palliative care
Palliative care (from the Latin palliare, to cloak) is the active process of preventing and relieving pain and suffering to allow the cancer patient the best possible quality of life. The expression covers any form of medical care or treatment that concentrates on reducing the severity of the symptoms (rather than trying to halt, delay or cure the disease).
Many aspects of palliative care are applicable in the early stages of the cancer pathway in association with, and to help maximise, other treatments.
People sometimes associate palliative or hospice care with end-of-life and it can seem scary, but it is actually very supportive… CUP patients should seek the support of a palliative care team/nurse, whether they are still receiving treatment or not. Currently, I make very little use of the palliative care services but initially, I was more reliant on the palliative care team than oncology. A CUP patient (who subsequently received a site specific cancer diagnosis) writing to CUP Foundation – Jo’s friends.
The expressions ‘palliative’ and ‘supportive’ care are used differently by different people. The terms are often used in an interchangeable way in the UK. Some hospitals have ‘Hospital Support Teams’ covering palliative and supportive care. The bottom line is that hospitals and cancer centres will have concern for the patient’s physical, social and mental care – the things we talk about on this page – in the way that the Roman soldier had a pallium or cloak to help keep him comfortable. Tackling pain brought on by cancer or its treatment is a key role of the palliative care team.
Some patients will fall back on their own inner resources and the help of family and friends; many will benefit also from the professional services that are available (and a patient’s needs are likely to fluctuate over time). Patients’ reactions to a cancer diagnosis will vary considerably but can range from fighting spirit, denial, hopelessness, and acceptance. An important part of the support package for many cancer patients is psychological and spiritual care.
Assessment and discussion of a patient’s needs for physical, social, spiritual and financial support should be undertaken at key points. [e.g. at diagnosis and during treatment] Source: NICE.
Taken as a whole, the support system can help an individual and their family live as actively and happily as possible. To access palliative care and support in your cancer network ask your doctor or nurse. (Information on State financial Benefits and Entitlements to help the cancer patient is shown also on our website here).
Whilst many CUP patients will receive a combination of cancer treatment with palliative care, some patients with advanced cancer may reach a point where they face a difficult choice between (continuing) anti-cancer treatment (such as chemotherapy), or supportive and palliative care with no (further) curative interventions.
To continue active treatment or not?
For the patient in this bewildering environment it may help to work-through, and then weigh-up, the pros and cons. Chiew et al (2007) have developed a 7 step process for advanced cancer patients to aid decision making.
1. Understand your situation
2. Learn about your treatment options
3. Review the pros and cons of these options
4. Decide how important these pros and cons are to you (see Note)
5. Do you want more information or discussion with your doctor?
6. Decide who should take the decision: you, your doctor, or a shared decision involving you, your doctor and family members?
7. Where are you leaning – towards anti-cancer treatment or towards supportive care?
Note: Weighing-up the pros and cons might involve considering the pros of chemo (e.g. I may live longer, my cancer symptoms may improve, I’m going to fight this because…) with cons (e.g. chemo side effects, frequent trips to hospital, no guarantee that the treatment will work, costs). Once you have a list of pros and cons, which may be long or short, you can then revisit it to ask more questions of the doctor or ascribe a weighting to each such as: very important, somewhat important, not important.
Prognosis (Chance of recovery)
These pages are written to help CUP patients and their carers to understand more of the CUP phenomenon and thus assist them to work with the medical experts to make educated and informed choices about treatment.
One of the problems with understanding CUP is that it is a neglected area of research and the data are limited. One should always be wary of statistics, particularly in an under-researched area such as CUP where it is difficult to determine what is ‘average’. Definitions of CUP also vary in different studies. A study by the National Cancer Intelligence Network (NCIN, 2014) covering the years 2006-10 showed the 1-year survival rates for all CUP patients in England to be 16% (age impacts survival: 40% were aged 80 years and over). The study showed that those presenting through the GP under the ‘Two Week Wait’ have a significantly better survival rate compared with those presenting as an emergency.
For those with a provisional diagnosis of CUP the tests will lead hopefully to the identification of a treatable condition. However, the harsh fact is that the prognosis of those with confirmed CUP is poor. But those identified with confirmed CUP should be reassured that a CUP diagnosis does not preclude a rational treatment plan.
A CUP prognosis is frightening for patient, family and friends. In different ways we learn to cope and many will live in faith and hope. Studies have shown hope to be a buffer to stress and to improve physical and mental well-being.
Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them. Jerome Groopman
So, whilst maintaining hope is very important (and Camus wrote that it is incumbent on us to invent it in some circumstances), it should be appropriate. Well-meaning attempts by doctors to shield end of life patients from the truth can lead to unrealistic hope and subsequent anger. Sensitive doctors, who have developed a relationship with patient and family, will help explain reality gently and appropriately.