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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:
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:
You may not know what it is, but you will probably sense if there is something wrong with your body. Think CUP:
Change: something that is happening with your body that is different or unusual; something new or something that feels wrong
Unexplained: something that you can’t work out a reason for the change or why you feel unwell
Persistent: something that will not go away – the symptoms may or may not be 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.
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.
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):
If he or she is concerned about possible cancer, the GP should refer you to a specialist. In 2018 the NHS have started a pilot scheme of Rapid Diagnostic Centres or ‘one stop shops’ in some hospitals to speed diagnosis for people with vague symptoms and it is possible that you may be sent to one of these. (This scheme will be extended nationwide in England from 2020). 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:
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:
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.)
See Hospital diagnosis for the next steps.