Living with Lung Cancer

A decision shared …

The goal of your treatment may be to try to cure your cancer, to slow its growth, or to relieve your symptoms. With any treatment you need to understand the likely benefits and risks. Your cancer team will recommend the best treatment for you, but what actually happens is your decision. This can be difficult for you and those close to you.

There are a number of decision aids to help people with lung cancer considering their treatment options. Your doctor might work through one with you when there are choices for you to make. Here are some examples that your doctor might work through with you:

• From the Roy Castle Foundation website

• Download an NHS RightCare lung cancer decision aid from the list of decision aids provided by the National Institute for Health and Care Excellence (NICE)

Cancer treatment of any type is likely to disrupt your daily life for weeks or months at a time and can be quite debilitating.

Some people choose to delay starting treatment until after, say, a long-planned holiday or a family wedding. Some accept surgery but refuse follow-up chemotherapy. There are some who choose to stop, or not start, treatment because they don’t want the disruption and discomfort that may come with it. Others, of course, want every treatment that’s on offer.

These decisions are yours to make. You should discuss them regularly with your medical team and your loved ones so you can reach a balanced, shared decision and everyone is aware of what you do or don’t want.

Things that influence your options

It is possible to be cured of lung cancer. Successful treatment depends on (in no particular order):

• Where in the lung your tumour is growing

• The kind of abnormality making the cancer cells

• The size of the cancer and how long it has been growing

• How fast the cancer is growing and if it has spread

• Your physical fitness and emotional wellbeing

All these things will influence the treatment your medical team recommends. Many people think surgery is the only effective treatment for lung cancer. This is not always true, and your doctor will consider the best treatment options for you. There are a variety of options, including chemotherapy, radiotherapy, various targeted, or biological, therapies, plus newer treatments such as immunotherapy.

• For more details of when these options may be used, visit the Roy Castle website to read about the possible treatments for lung cancer.

• Go to Cancer Research UK for details of the different drugs used in chemotherapy, including how you take them and their possible side effects.

See Nicola’s video diary about her day-to-day experience of chemotherapy at the Roy Castle Foundation website.

Your cancer’s stage and grade

The stage of your cancer is a key factor in deciding what treatment is best. For non-small cell lung cancer, doctors most commonly classify the disease using the TNM system (Tumour, Nodes, Metastasis, or spread). In TNM each factor is given a number according to its severity – the lower the numbers, the less advanced the cancer. The cancer is also given a grade depending on how the cells behave. Cancer is also described in a numerical system as stages 1-4 (or I-IV), with 1 (I) being the least advanced. Numbered stages are usually derived from TNM. If you have small cell lung cancer there are only two stages – limited and extensive, though TNM is also sometimes used.

Go to Cancer Research UK to understand staging and grading

Side effects

Both chemotherapy and radiotherapy – and other treatments – come with the risk of unpleasant side effects. It is not possible to predict exactly what side effects you’ll get or how severe they might be. The list – including things like tiredness, hair loss, feeling sick, losing your appetite, having trouble swallowing – is lengthy. You are unlikely to have all of them and some people experience few or only mild effects. You should discuss this with your medical team – most side effects can be treated and almost all will disappear after your treatment ends.

Surgery also comes with risks of side effects or complications, such as infection, pain, bleeding or blood clots.

• Get detailed information about side effects of chemotherapy and radiotherapy at Macmillan

• Download the Roy Castle Lung Surgery booklet

Complementary therapies – a word of caution

It is reckoned that around a third of UK cancer patients make use of complementary therapies¹. Such therapies include things like flower remedies, art therapy, electromagnetic therapy and numerous other practices that fall under what is sometimes called Complementary and Alternative Medicine. But, for the most part, it’s not an alternative to your current treatment or it would have been in your treatment options.

There are, however, useful complementary therapies that people say help them cope with symptoms and ease tension and anxiety. There’s no reason not to use them in this way, but you should always let your medical team know – some complementary therapies could interfere with your main treatment.

• For more information see Macmillan’s complementary therapy pages or ‘Complementary and alternative medicine’ at NHS Choices

‘I called my tumour Bernard’

Jane Holmes didn’t smoke or drink, did plenty of exercise and was a healthy eater. And at 43, in 2014, she was diagnosed with inoperable lung cancer after a chest x-ray for something unrelated. The cancer had spread to lymph nodes in her neck. As she went through chemotherapy and radical radiotherapy, she named her tumour ‘Bernard’ – but he didn’t last long. Jane’s treatment cleared the cancer from the lymph nodes and made lung surgery an option.

• Read Jane’s story at the Roy Castle Foundation

Information – sorting the wheat from the chaff

Learning as much as you can about your cancer can help you make balanced treatment decisions and deal with many other aspects of the illness.

When you use the internet, newspapers and magazines to learn about lung cancer and the latest developments, you need ways to judge how reliable the information is. Just about anyone can publish ‘information’ online and printed articles are often written by people with little or no medical knowledge. Headlines, in particular, often overstate the strength of a story. But there are things you can do to avoid being misled.

• Read Dr Alicia White’s article on ‘How to read health news’ at NHS Choices

• Visit MedlinePlus for advice on ‘Evaluating health information’

• Look at this Guardian article about health websites you can trust