Challenging the confusion around lung cancer symptoms

One of the biggest areas of confusion and misconception around lung cancer is its symptoms.

First of all, there are so many! There are respiratory-based symptoms, like a persistent cough or shortness of breath, which seem logistic signs of lung cancer. Then there are other lesser known symptoms, such as shoulder pain and clubbing of the fingers, which most people would not think could be signs of lung cancer.

What are the symptoms of lung cancer symptoms

Here is a list of the potential symptoms of lung cancer:

• A persistent cough, which lasts for three weeks or more
• Shortness of breath
• Repeat chest infections
• Coughing up blood
• A cough that changes, or gets worse
• Unexplained weight loss, or loss of appetite
• Extreme tiredness or lack of energy
• An ache or pain in your chest
• Wheezing
• Hoarseness
• Shoulder pain and/or back pain
• Clubbing of the fingers
• A lump in your neck
• Difficulty swallowing.

Everyone experiences different symptoms. Some people have one, some have multiple symptoms. In the very early stages of lung cancer, a person can be asymptomatic which is why lung cancer screening is so important and why anyone invited for screening should attend, even if they feel well.

If I had lung cancer, I’d have a cough

A persistent cough is the most recognised symptom of lung cancer. Many awareness campaigns, including the NHS Help Us Help You campaign, focus on a persistent cough as the main symptom of lung cancer.

However, it is important to remember that not everyone with lung cancer will have a cough.

Petra’s story

Petra had no idea that shoulder pain could be a symptom of lung cancer. Instead, she understandably put the pain down to swimming; Petra was training for a long-distance swim at the time. Petra was also feeling very tired. Again, she put this down to other causes including menopause and life in general!

It’s really important that people realise you don’t need to have a cough or other respiratory symptoms to have lung cancer. I think this is a common misconception because so many of the awareness campaigns for lung cancer focus on a persistent cough, or shortness of breath. But there are many other symptoms than could indicate lung cancer, like the shoulder pain and fatigue I experienced.

It took Petra several months to receive her diagnosis. Her GP also attributed her shoulder pain to a muscular injury. When the pain intensified, Petra made the decision to pay for a private MRI scan. The results showed there was a secondary cancer in her shoulder. The primary cancer was later confirmed as lung cancer. Petra is currently being treated with immunotherapy.

Jules’s story

Jules did not have a cough. Her symptoms were back ache, shoulder pain and a lump in her neck. Her back pain was attributed to sciatica. The ache in her shoulder was diagnosed as tennis elbow (this was concluded after a telephone appointment due to Covid!). The lump in her neck was presumed to be a swollen gland.

I was diagnosed with stage 4 EGFR+ lung cancer after a series of what I now know to be lung cancer symptoms – back ache, shoulder pain and a lump in my neck. I was totally unaware that any of these were signs of lung cancer and my doctors didn’t piece it together either.

When the lump in Jules’s neck was dismissed as a cyst or swollen gland, she pushed back. Jules was referred to an ear, nose and throat specialist which finally set her on the route to diagnosis. She is now approaching two years into her diagnosis and feeling well.

Symptom crossover

As both Jules and Petra’s story show, many of the symptoms of lung cancer can be attributed to other causes. This has been especially impactful over the past few years during the Covid-19 pandemic and messages around a persistent cough.

Under the guidelines by the National Institute of Care and Health Excellence (NICE), doctors should offer an urgent chest x-ray to people people aged 40 or over with two or more of the following unexplained symptoms, or if they have ever smoked and have one or more of the following unexplained symptoms:

• Cough
• Fatigue
• Shortness of breath
• Chest pain
• Weight loss
• Appetite loss.

An urgent chest x-ray should also be offered to people aged 40 years and over with any of the following:

• Persistent or recurrent chest infection.
• Finger clubbing.
• Supraclavicular lymphadenopathy or persistent cervical lymphadenopathy.
• Chest signs consistent with lung cancer.
• Thrombocytosis.

If you feel these guidelines are not being followed, or you do not believe your symptoms are being thoroughly investigated, do not be afraid to push back, ask for tests or get a second opinion.

Symptom Validation

We are all aware that our health service is under immense pressure and accessing primary care can be difficult. This can cause people to downplay symptoms, especially respiratory-based symptoms in the winter months. This lack of urgency can also be exacerbated when the person experiencing symptoms does not fit the so called lung cancer profile.

Dave’s story

Dave wasn’t too worried about his persistent cough – even though it was so severe it caused a hernia! He’d been to his doctors, got diagnosed with a chest infection and told to be patient. And that’s what Dave would have done had it not been for his partner, Emelie, urging him to go back to his doctors.

I used to see the advert on TV about a persistent cough and thought that didn’t apply to me. I had never heard of non-smokers getting lung cancer.

Thankfully, Dave’s lung cancer was caught just in time. He had surgery which was followed up with chemotherapy and is approaching two years all clear.

Glenys’s story

Working in a doctor’s surgery, Glenys can see how busy primary care is, so when she started to experience a pain in her clavicle, which moved down her arm, she soldiered on. Circumstances had it that a good friend who is a GP spotted Glenys was struggling and when she explained her symptoms, he knew something wasn’t right.

He said my symptoms were ‘classic lung cancer’. This really shocked me because I always thought if you had lung cancer you would have a cough or get out of breath easily. I had just come back from holiday and had done lots of snorkelling.

Glenys was diagnosed with late stage lung cancer. After having immunotherapy, Glenys has been told she is now in remission.

Forget everything you think you know about lung cancer

It is important that if you have any potential symptoms, or even if you just feel generally unwell for a prolonged period of time, that you seek help – regardless if you think you fit the profile, or a frightened by what they might find.

If you are struggling to get a GP appointment, do not give up. You have to be persistent. Make sure you full explain your symptoms to the practice, including how long they have been going on and also highlight if it is impacting on your mental health, as well your physical health.

When you do meet with your doctor, make sure you provide a full picture of all your symptoms, even if you don’t think they are relevant or related. Our symptom tracker can help you do this.

If you are not happy with the course of action taken, or if your symptoms persistent, you must go back to your doctor, or ask to see another doctor. Be forthright and frank about what you think is wrong with you and don’t be afraid to ask questions. “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?“

If you are being prescribed another course of antibiotics, don’t simply go along with it. You can say “Thank you for that treatment but actually I don’t feel any better. What else can we try?“

If you are waiting for a call back, a follow up appointment or test result, it is your responsibility to chase that up. Don’t get lost in the overworked system. Be a nuisance – in the nicest way possible! Be your own advocate. Be Unforgettable.

Do you have a lung cancer story to tell?

Share your experience and help us challenge the dangerous misconceptions of lung cancer.