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CANCER OF UNKNOWN PRIMARY FOUNDATION

Going to the General Practitioner

From the patient perspective, there is a danger that we learn to live with our symptoms. We convince ourselves, from our interpretation of the symptoms, that there is nothing really wrong; and that we do not want to bother our overworked GP. But, if it is cancer, early diagnosis is vitally important. To use a military maxim: make sure that the enemy diversion you are ignoring is not the main offensive. Research by Cancer 52 into symptom awareness for less common cancers (July 2010) suggests that patients and GPs should look out for:

  • Severe tiredness
  • Pesistent pain
  • Lumps
  • Unexplained weight loss
  • A combination of two or three symptoms

Through their scientific expertise and experience good GPs, young and old,  have a ‘nose’ for a presentation that may be cancer that requires further investigation. But:

  • Some cancers, such as CUP, have only very vague and generalised symptoms which can easily be confused with other conditions.
  • On average a GP will diagnose only a few cases of cancer every year. He or she may never experience a less common cancer such as CUP. The current (2005) NICE referral guidelines for GPs (now being re-written) do not even mention CUP.
  • GPs face inflexible referral systems and are under pressure, and in some cases incentivised, not to refer too many patients to avoid overloading hospital consultants. (A study by NHS England in 2013 found that only 46% of cancer patients diagnosed in 2011/12 had been referred to a specialist as an ‘urgent’ case).
  • The flow charts, decision trees, and tick boxes often used by GPs to make a diagnosis, work best when applied to people who have straight-forward presentations; and, for cancer, they favour the more obvious major cancers. These decision aids do not work well for the generic or non-specific symptoms that a CUP patient may have. Patients are individuals who do not always fit ‘boxes’.
  • GPs are under time pressure and when dealing with uncertainty they may settle on the first apparently logical piece of data presented.

You may not know what it is, but you will probably sense if there is something wrong with your body. The key words are: unexplained, persistent, recurrent, severe. Do not delay, book an appointment to see the GP. For cancer survival, early and accurate diagnosis is critical.

Don’t be afraid to make return visits. Cancer is often not picked-up on the first visit. The Cancer Patient Experience Survey of 2011-12 reported that more than a quarter of people diagnosed with cancer see their GP three times or more before being referred to a specialist. Ask new questions and be persistent. If your symptoms continue or the treatment you have been given is not working, the first thing you should do is repeat your story, even if you are not asked to. Sometimes, the doctor will hear something he or she didn’t hear the first time round; sometimes you might say something you had omitted. If you do not have a GP or want to know more about the available NHS services you may find this website helpful.

Help the doctor to achieve the correct diagnosis

It is really important to describe all your symptoms and fears to the doctor. Some people are nervous or diffident when talking with a member of the medical profession. For older people this may be because we were brought up to believe that doctors are important and always right – a belief shared by many doctors!  Take a relative or friend with you to the doctor to help you explain your symptoms and to listen for you. It is estimated that about 50% of information is retained accurately by patients in a medical consultation. You may find it difficult  to cope with information or even communicate properly, particularly if struggling with the shock of a possible cancer diagnosis.

Having a carer or friend present is very helpful at consultations and during treatment.

Hopefully, medical professionals will constantly check their listeners’ level of knowledge and understanding and express things differently, if necessary.

Describe your symptoms accurately

It is often the case that patients do not describe their symptoms well. It can be a good idea to write these down in advance to help you discuss them with the GP or hospital doctor. It can be helpful to get someone you live with, or who knows you well, to check-over this list and come with you to the doctor to speak about anything that you miss. The doctor will be particularly interested in things like: weight loss, tiredness, any pain or swelling, bleeding, discharges and persistent coughing. The doctor will ask you about your previous medical and social (smoking and exposure to things linked with cancer) history and your family medical history. The bullet points below have been adapted from Groopman (2007):

  • Express your deepest fears. If you are worried about cancer, say so. The doctor needs to hear that. If you think your symptoms may relate to a particular cancer he or she can explain why your symptoms are not a cancer signal; or refer you for hospital tests.
  • Ask the doctor constructive questions such as: What else could it be? This is a key safeguard against against errors in thinking, and encourages the doctor to re- examine the initial diagnosis.
  • Is there anything that doesn’t fit? This question is to overcome what is known as ‘confirmation bias’. If a doctor draws selectively on the data that confirms a preconceived idea, he or she might have discounted information that contradicted the initial theory. So by asking whether there is anything that doesn’t fit, or is contradictory, it causes the doctor to pause and think more broadly.
  • When you have test results it is worth asking: do the results match the symptoms? Do I have more than one problem? In medical school, doctors are often taught an ancient logic (called Ockham’s Razor) which dictates that: all things being equal, the simplest single solution tends to be the best one. This is not always the case and there might be more than one thing going on. This question will prompt your doctor to consider other possibilities.

Referral

If he or she is concerned about possible cancer, the GP should refer you to a specialist. If you have mostly the symptoms shown below you may go first to one of these experts before being sent on to the CUP Team:

  • Digestive tract, bowel or stomach symptoms – Gastroenterologist
  • Chest/Lung symptoms – Respiratory specialist
  • Enlarged lymph gland – You’ll often be seen by a surgeon first. If the gland is in the head and neck area you may be referred to a head and neck specialist or an ear nose and throat (ENT) specialist. If the enlarged gland is under your arm you may be referred to a breast specialist
  • Symptoms related to the vagina, cervix, womb or ovaries (female reproductive system) – Gynaecologist.
  • Women who have fluid collecting in the abdomen (ascites) are usually seen by a gynaecologist.
  • Urinary or kidney symptoms; disorders of the male reproductive system – Urologist
  • Symptoms to do with your blood cells –  Haematologist

The specialist you see first will depend on the symptoms you have. If these are unclear but you are presenting with what looks like metastatic malignancy you should be sent to the hospital CUP team. Patients may present to the hospital CUP team via several different routes:

GP referral
A&E attendance
Admission under medical or surgical teams
Referral via cancer site-specific multi-disciplinary teams (MDTs)

For referral to the CUP team, a patient will probably have had a CT scan of the chest, abdomen and pelvis which shows suspected metastatic malignancy of unknown primary origin (MUO). Possible indications for referral include liver, lung, bone or peritoneal metastases with no clear primary. (However, head and neck lumps will normally be referred to the ENT team in the first instance as a biopsy and panendoscopy will be required. Isolated axillary lymphadenopathy is likely to be referred to a breast surgeon.)