The process

Hello ChrisYorks,

Thanks for getting in touch. My name is Megan, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

Welcome to the online community. I can see you have joined the Lung cancer forum and New to the Community forum and do hope you have been finding these platforms supportive.

I am sorry to hear you have found the process of undergoing investigations a confusing and worrying time. I hope my response will help explain generally what happens throughout a suspected cancer referral.

Although there is variance across the four countries, the process of being referred for further investigations of symptoms is relatively similar but everyone’s experience will differ.

Most often a person presents to their GP with symptoms and there is a need to rule out cancer therefore an urgent referral for suspected cancer is completed to meet a specialist team often based within a hospital who can further investigate the symptoms.

It is important to note that more than 9 out of 10 people sent for investigations on an urgent suspected cancer referral will end up having a non-cancer diagnosis. However, the person referring (e.g. GP) should make clear that they are sending someone for investigations to check for cancer.

The importance is to try and rule out cancer as a cause as soon as possible, because if cancer is the cause, then guidelines state treatment should start within 31 days of diagnosis and 62 days from referral.

It used to be that everyone would first meet a specialist, sometimes a cancer doctor, within two weeks of referral. This was to explain why they had been referred and what tests they would undergo.

Nowadays to speed up waiting times and prevent delays in diagnosis of cancer across the UK, once a referral has been received people will often be sent for investigations first prior to meeting with any specialists. This is possibly why you have yet to meet with a doctor.

The level of investigations completed before meeting a doctor can vary but it’s preferable to speak with a doctor once all tests have been completed and discussed in a multidisciplinary team (MDT) meeting. This can be why some people receive more news earlier on in the process compared to others, it just depends on when their appointment was amongst the investigations.

It is important to note that even the tests that confirm non-cancer diagnosis also get discussed in a cancer MDT as this concludes the urgent suspected cancer referral process and outcomes are sent back to the GP’s for their information.

A radiologist reviews all imaging completed within the MDT and advises a likelihood of cancer. Sometimes it will be extremely likely to be cancer, sometimes extremely unlikely to be cancer and sometimes it will be unclear and further investigations might be recommended.

As we explain in our information about lung cancer a chest X-ray and CT scan are most commonly completed first and can even be tests organised by a GP. A PET scan is a more specialised scan and is organised by a hospital team as needed.

Although a PET scan is used for diagnostic purposes, adequate information to diagnose may be obtained from a chest x-ray and CT scan. Another reason perhaps why it seems some people receive news earlier on in the process.

Diagnosis of lung cancer is most often ultimately confirmed by a biopsy, a sample of tissue taken and examined under a microscope by a histopathologist. Further information about biopsies for lung cancer can be found here.

But again, if there is strong suspicion for cancer a person might not have a biopsy and proceed to treatments such as surgery so this can be another variance in individual experience.

Until all investigations have been completed specialists including Cancer Clinical Nurse Specialists can be mindful not to assume or cause any unnecessary distress as for some, cancer will not be diagnosed.

Also, it is important to say that it is generally not the Cancer Clinical Nurse Specialist’s role to deliver a cancer diagnosis. If indeed you have a lung cancer diagnosis, it is the responsibility of a cancer doctor to relay that information and its meaning first in an appropriate setting, followed by Cancer Clinical Nurse Specialists who can additionally support thereafter.

I would encourage you to feedback your concerns to the hospital team and your GP. If you do not have an organised follow-up appointment yet with the hospital hopefully they can advise when you are likely going to speak with a doctor about the investigations you have been undergoing.

I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Megan

Cancer Information Nurse Specialist 

Ref MD/SH

Thanks for the super helpful explanation.