Mind Matters

The road to diagnosis is different for each person living with lung disease or lung cancer. Everyone will experience a range of emotions during the diagnostic process. In this section, we will discuss ways to help you manage your emotional well-being while undergoing a diagnosis and then coming to terms with it.

Getting a diagnosis

People can arrive at a diagnosis many different ways.  Some people may have no symptoms, but have their condition discovered when seeking medical help for another reason. Others may have noticed symptoms such as shortness of breath or have a cold that won’t go away and ask their GP to investigate. 

In the period of time between thinking things ‘aren’t quite right’ and finding out that something is happening in your lungs, it’s normal to feel increased levels of worry and stress. Uncertainty is always very unsettling. Reminding yourself that it is normal to feel heightened levels of worry, anxiety and trepidation in this period, can sometimes help you to feel more in control.  

Going to appointments and tests can also be quite stressful. You may feel nervous and scared, unsure of where you need to go and concerned about what information you will be given and the next steps.

Delays in diagnosis 

One of the most common complaints about getting a lung disease or lung cancer diagnosis is that “it took too long”. Sometimes it can take quite some time to pinpoint a diagnosis. Delays in getting an accurate diagnosis can happen because many of the early symptoms, such as cough, shortness of breath and tightness in your chest, are shared by many different lung conditions. Your doctor and the rest of the treating healthcare team know how upsetting this can be, and will do their upmost to avoid delays and ambiguities in diagnosis. 

Uncertainty around diagnosis

Not all lung conditions are easy to diagnose. Many lung diseases are like chameleons, they can look a lot like each other on scans and pathology slides. A number of experts, including a respiratory specialist or oncologist, specialist respiratory radiologist and specialist pathologist, will often review and discuss your results at great length in order to accurately diagnose your lung condition.  

If you are told by your specialist doctor that they cannot give you a 100% certain diagnosis and have to wait for changes or progression in order to be able to provide an accurate diagnosis, don’t despair. Your specialist doctor will be very keen to have a clearer picture of what is happening with your lungs too. However, rarer lung conditions can be tricky to identify and distinguish at times. That doesn’t mean that they won’t explore treatment or management options with you, they will. 

Resist consulting ‘Dr Google’

The internet can be a wonderful resource. However, this same resource can at times be a scary, frightening and alarming source of information.  

Even some of the reputable websites which have government or hospital backing can discuss mortality and morbidity rates that you may not prepared for. Some webpages can cite out-of-date research or suggest out-of-date treatment methods.  

It is a good idea to resist reading too widely about your lung condition until you have had a discussion with your specialist doctor or your GP. Ask them for some up-to-date resources and recommendations of reputable websites with accurate information.   

Your first port of call for any information about your diagnosis should be your GP or the treating team aligned with your specialist doctor. 

Coming to terms with your diagnosis 

For many people receiving a diagnosis of lung disease or lung cancer can be surreal. For some it may come as a relief to finally have some answers but for others it can be quite a shock. There is no correct way to feel about your diagnosis; each person will have their own unique experience. There are strategies that can help you to process the myriad of feelings you may experience following your diagnosis, such as talking to others, staying engaged and incorporating activity in your day to release feel-good chemicals. For more information read our blog about coping techniques for living well. 

When I was newly diagnosed, I was completely unprepared.  I thought I was coping but I didn’t take the time to acknowledge the pressure I was under.” – Anonymous, living with lung cancer. 

Impact of diagnosis on mental health

If you or a loved one has been diagnosed with a chronic or life-limiting lung condition, you and your family may experience a symbolic loss (the type you can’t touch or see) as the implications of the diagnosis become understood and real. Many will experience a grief reaction at this point. Yet, the impact of a lung condition can be like ripples in a pond after a stone is thrown in. Little is recognised about the secondary losses. 

Secondary losses can develop as a consequence of the initial loss, in this case the diagnosis. Physical secondary losses might include the need to downsize or modify a home to accommodate for deteriorating health, the need to retire from work early or the subsequent loss of income. This can trigger the likelihood of other adjustments such as roles changing within the family as your condition progresses. The closer the person diagnosed is to their caregiver, the more likely they are to both feel the full impact of the secondary losses. 

“After diagnosis you need to re-prioritise your life, it may not be the same as you expected but life has so much on offer, you just need to seek alternatives.” – Anonymous, living with Chronic Obstructive Pulmonary Disease.

Acknowledging the mental impact early can help you and your family gather the tools you will need to look after your emotional wellbeing as well as your physical wellbeing.  

For further information about managing role changes and family relationships after a diagnosis, see our blogs on Partners as Carers and Parents as Carers. 

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Mind Matters was part funded by a COVID Response Grant from MSD.