1st November 2022

Top tips for getting on the right path

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1. Know the symptoms

There are many different symptoms of lung cancer and they are not all respiratory. Some people have one symptoms whilst others can several. It is really important to be able to recognise all the different potential symptoms and understand which ones you are experiencing.

Looking back my body was trying to send me a message. My back pain, shoulder pain and the lump in my neck were all symptoms, little jigsaw pieces that weren’t put together soon enough.

Jules, living with stage 4 EGFR+ lung cancer

Lung cancer symptoms can include:

These symptoms can all be a result of other causes and the majority of people who experience them do not have lung cancer. However, this should not stop you from getting checked out. It is always best to be on the safe side and you are not wasting the doctors time. If your symptoms are persistent or getting worse, you need to contact your doctor as soon as you can.

2. Polite but persistent

We understand many people are still struggling to get a doctors appointment, particularly a face to face appointment. This can be very frustrating but you must not give up. It’s very easy to request an appointment, be brushed off and feel that that’s the end of it. It absolutely must not be the end of it. You must be persistent and make sure the person you are talking to realises what the problems are and that they are persistent and ongoing.

Make sure you explain what your concerns are. It can be hard to say the words “I think I might have cancer” but if that’s what you think is happening, it’s really important that you tell something that’s what your fear is.

If things really aren’t going the way you think they should be going, nobody is listening to you and you are not getting an appointment, it’s worth asking about the practice complaints policy because actually sometimes you do need to escalate these things to be taken seriously and to make things move. All practices have a complaints policy and they should respond to complaints very quickly.

If you are still unable to get an appointment, you can speak to your pharmacist, call NHS 111 or go to a local walk in centre. There are also some drop in x-rays services in selected areas for people who are experiencing symptoms.

3. Paint the full picture

It is really important you give full and accurate details of all your symptoms – even if you don’t think they are relevant or linked.

I’d had a cold and cough around Christmas time. It resolved on its own so I didn’t think too much about it. However, a couple of months later I got a chest infection. I went to the doctor and told him about the first infection as well as this one and something just clicked for him.

Tracy was diagnosed with stage 1 lung cancer in 2019

Our symptom tracker can help you understand the different symptoms you are experiencing, when they start, how severe they are and how long it has been going on. You can then use this at your appointment to give your doctor the full picture.

4. Always start from the beginning

If you have subsequent appointments, there is a case you will see a different doctor, or the clinician you previously saw might have forgotten the information you gave last time and only made brief notes. Don’t presume they will know, or remember the full details of your problem so each time you go in for an appointment it’s about starting from the beginning. You should also highlight any other appointments you have had, what was discussed or prescribed and if your symptoms have changed or got worse.

5. Plant the seed

You are allowed an opinion on what you think could be causing your symptoms and, if you do, you need to communicate this.

Be really forthright and frank about what you think is wrong with you. “I don’t think this was an infection. Could this be something more serious? Is this something that needs more investigation? Do I need a chest x-ray?“ Put that thought into the person’s head so even if they say absolutely not, I’ve considered all that, it is still worth having that conversation.

6. Follow up

If you have been sent for tests, it is imperative that you chase up the results. Don’t presume you will be contacted as soon as the results are ready.

If you’re expecting follow up – be that an appointment for a chest x-ray, the results of some tests, or a follow up phone call from your GP – and that doesn’t happen then take it as your responsibility to follow that through. It’s only too easy to get lost in the system and you don’t want that to be you so if you’re expecting an appointment, a phone call or results, and you don’t get them when you think you should, be a nuisance. Be persistent and talk it all through.

7. What else?

One of the most common experiences we hear from patients is that they have repeated visits to their GP where they are often prescribed several courses of antibiotics for a chest infections or pneumonia.

If you have had a course of antibiotics, they have not worked and your doctor is prescribing you another course, don’t be afraid to challenge this and ask what else could be done. You can ask for further investigations such as blood tests or a chest x-ray.

I had been suffering from a cough for several months. I was prescribed antibiotics but the cough persisted so I went back to my GP for a second opinion. It felt a bit cheeky saying to the GP that I don’t think it is what you’ve said it is. I was a little hesitant to push it further but now I’m so glad I did.

Joe was diagnosed with stage 1 lung cancer in 2011

8. Knowledge is power

There are guidelines for GPs to follow for suspected lung cancer. These are called the National Institution for Health and Care Excellence (NICE) guidelines and it states an urgent chest x-ray should be offered to people experiencing selected symptoms. The x-ray is to be done within two weeks.

It is important to have an understanding of these guidelines so you can cite them to your GP if you are not being referred as quickly as you should.

For more information or advice, contact our nurses on 0800 358 7200 or email lungcancerhelp@roycastle.org