Living with Lung Cancer

Make the most of the healthcare system

Your cancer diagnosis will have quickly drawn you into a whirl of appointments and tests. All lung cancer patients should have their case considered by a multi-disciplinary team (MDT) made up of experts in cancer care.

Who’s in the multi-disciplinary team (MDT)?

The core MDT typically includes a chest or respiratory doctor, a cancer specialist (oncologist), a lung cancer nurse specialist, a chest surgeon (thoracic surgeon), a radiologist, a histopathologist (a specialist in examining biopsies and other samples), and members of the palliative care team, who manage symptoms.

You may have already met some of these. If you haven’t been told your case has been referred to an MDT, you should ask about this – outcomes are known to be better when all the expertise of an MDT is on the case.

The person you are likely to see most often is your lung cancer nurse specialist. The nurse specialist is your ‘key worker’ and will ensure your care runs smoothly while providing support and advice for you and your family. You should have contact details for the nurse specialist so you can get in touch directly to discuss any worries or issues confidentially.

Away from the hospital, your GP remains central to your care, but there’s a host of other people who might be involved. These include a district nurse, occupational therapist, dietician, social worker and others. In general, your GP or lung cancer nurse specialist can refer you to any services you need.

• Read about the lung cancer multi-disciplinary team and other services, and the role of the nurse specialist at the National Lung Cancer Forum for Nurses

Planning for your appointments

When you have an appointment with a consultant, your GP or other clinician, it’s worth thinking in advance about what you want from the meeting. These are stressful times and it’s easy to be distracted and not ask all the questions that were on your mind. It’s also hard sometimes to take in the answers.

To make the most of each appointment:

• make a note of questions as they occur to you before the appointment

• take with you a list of the key things you want to ask

• ask the doctor to explain anything that isn’t clear to you

See questions to ask the doctor at NHS Choices for advice on getting the most from your appointments.

You can also take someone with you if you wish and some people take notes during an appointment so they don’t forget key points.

Second opinions

People sometimes want a second opinion from another doctor on their treatment plan or diagnosis, and a request will be considered if you ask. Further discussion with your current doctor can often settle any concerns and the second opinion becomes unnecessary.

However, if you do want to see a second consultant, bear in mind that this might delay your treatment and involve travel to a different hospital. While people with suspected lung cancer should see a specialist within two weeks, that won’t apply to your second opinion and you may have to wait. The implications of any delay to your treatment might affect your decision.

• See ‘How do I get a second opinion?’ on the NHS website

Research and clinical trials

Some people with lung cancer feel they want to ‘do something’ about it alongside their treatment. One way is to get involved in research or clinical trials – this might make you feel better, and in the longer term you’ll be helping others.

Watch this video on the value of lung cancer research from the Roy Castle Foundation:

There’s no shortage of opportunities to get involved: along with numerous research projects, in November 2017 the UK Clinical Trials Gateway listed more than 230 trials around lung cancer that were looking for people to take part.

The NHS National Institute for Health Research offers lots of ways for people to join in. It also has a resource page that lists online information sources and booklets that could help you decide if you want to be involved in research and in what ways.

Subsequent to your diagnosis, information about your disease and your personal details will have been added to the National Cancer Register as part of research to understand causes of cancer and improve diagnosis and treatment. Most people are happy to be registered, but you can opt out. Each part of the UK has a registration service:

In England, you can find out more from The National Cancer Registration and Analysis Service

In Scotland, visit the Scottish Cancer Registry

In Wales, go to the Welsh Cancer Intelligence and Surveillance Unit

In Northern Ireland, see the Northern Ireland Cancer Registry

• Read more about taking part in research and clinical trials from the NHS

‘With surgery ruled out, I was ideal for a trial’

Michele McMahon believes she benefited from taking part in a clinical trial comparing different chemotherapy and radiotherapy regimes.

“Due to my enlarged lymph nodes, surgeons couldn't operate but that did make me the ideal candidate for a trial called SOCCAR,” she says. “I was just in the right place at the right time. This is one of many things really that have me believing that parts of my journey have been left up to fate.”

• Read Michele’s story on the Roy Castle Foundation website

Concerned about your care?

If you are worried that something isn’t right about any aspect of your care or treatment, first talk to whoever is responsible for what’s bothering you. If the issue can’t be resolved, there are various steps you can take.

In England, talk to the Patient Advice and Liaison Service (PALS) at your hospital.

• Find details of your local PALS on the NHS website

You can also get advice on services and problems from the Patients Association helpline.

• Call the Patients Association helpline on 020 8423 8999 (9.30-5.30 Monday to Friday) or visit the website for more details

If you want to make a formal complaint about something, all NHS services have a procedure for you to follow.

• See ‘How do I make a complaint about an NHS service?’ on the NHS Choices website

Similar services operate in each part of the UK:

In Scotland, visit the Patient Advice & Support Service

In Wales, visit the Community Health Council

In Northern Ireland, go to the Patient and Client Council