ALK Support
This section has been informed by ALK Positive UK, a registered charity established by patients for patients. The charity provides a range of support for people living with or affected by ALK+ lung cancer, including a private online support group, regional lunches for patients and their families, advice booklets and leaflets.
Click here to visit the ALK Positive UK website.
ALKPositive.org.uk
In this video, lung cancer clinical nurse specialist Delyth McEntee speaks to Debra Montague, chair of ALK Positive UK, about how she has felt throughout her cancer journey and how healthcare professionals can support patients. The topics covered include:
Healthcare professionals can play a key role in supporting patients from an emotional and psychological perspective. It is important that those interacting with patients can recognise normal coping strategies and identify cognitive or psychological distress, so that they can support and signpost appropriately. It is also important to be able to recognise any cognitive effects of medications such as Lorlatinib.
It is very natural for patients to experience low mood or feelings of sadness or loss after a cancer diagnosis or during treatment. Listening to a patient and helping them to recognise and name their feelings can be an important therapeutic intervention in itself.
It can be difficult to differentiate between patients experiencing natural distressing feelings following their diagnosis, and patients who may be becoming mentally unwell. It can be helpful to think of mental health as a continuum, along which a person can move in either direction. To see the full continuum, with examples of symptoms at each stage, visit The Mental Health Continuum Model (MHCM) – Canada.ca
Below are some of the mental health problems that can occur in patients, and the signs to look for to enable you to provide support, signposting and referrals for further help (click to open).
Occasional feelings of anxiety are a normal human experience; however, anxiety becomes a mental health problem when the worrying thoughts and fears are persistent, overwhelming or particularly intense.
Anxiety can present in a wide range of ways, from somatic symptoms including dry mouth, diarrhoea or nausea, palpitations and hyperventilation, to psychological symptoms including worry, pain, fear, tension, thoughts of death, fearing the worst, irritability, slowed thinking and poor concentration. Some patients may also experience panic attacks.
Read more: Anxiety and panic attacks – Mind
What is post traumatic stress disorder (PTSD)? | Mind – Mind
Overview | Generalised anxiety disorder and panic disorder in adults: management | Guidance | NICE
Patients who are experiencing depression suffer from feelings of low mood that are persistent and affect everyday life. At its most severe, patients can have thoughts or plans to self-harm, or suicidal feelings. There are a number of symptoms to be aware of, ranging from biological symptoms such as disturbed sleep or appetite, to mood symptoms such as a persistent sense of feeling sad or fed up.
If you suspect depression, a mental health team referral is indicated.
Read more: Types of mental health problems | Depression – Mind
Overview | Depression in adults: treatment and management | Guidance | NICE
Psychosis is seen in patients when they perceive or interpret reality in a different way from those around them. Common psychotic symptoms include hallucinations, delusions and disorganised thinking and speech.
There are many different types of mental health problems where psychosis is a symptom. It can also be caused by medications, such as steroids.
If you suspect psychosis, the usual action would be to refer patients to local or hospital based psychiatric oncology teams for specialist assessment.
You can find out more information at: Psychosis – Mind
Overview | Psychosis and schizophrenia in adults: prevention and management | Guidance | NICE
It’s normal for memory to be affected by stress, tiredness, certain illnesses and medicines. But if a person is becoming increasingly forgetful, particularly if over the age of 65, it’s possible that they could be experiencing early signs of dementia. You can read about the symptoms of dementia here: Symptoms of dementia – NHS
For new cognitive changes, it is important to consider the effects of medication, in particular Lorlatinib.
It is also important to recognise delirium and confusion in patients. If a patient is confused, they may not be able to think or speak clearly or quickly, not know where they are, struggle to pay attention or remember things, or have hallucinations. There may be many causes of sudden confusion, but in ALK patients it is important to consider brain metastases and effects of medications.
If you recognise that a patient needs mental health support, you can link them to local services appropriate for their needs. This is often done by lung specialist nurses, often via the patient’s GP.
The below specialist teams can support patients within the NHS.
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Community mental health teams (CMHT) |
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Home treatment team/crisis teams |
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Liaison mental health teams |
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Memory clinic |
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The two most common forms of treatment for mental health problems are talking therapies and psychiatric medication.
These provide a safe and regular space for the patient to talk, explore difficult feelings, learn methods of coping and put coping mechanisms into practice. Talking therapies include counselling, psychotherapy and cognitive behavioural therapy (CBT).
You can find out more information at: What are talking therapies and counselling? – Mind
Psychiatric medications are commonly used to treat mental health problems and manage symptoms. For example, antidepressants are used primarily for those suffering from depression and anxiety, and antipsychotics are primarily used to reduce symptoms of psychosis in those suffering from schizophrenia and bipolar disorder.
You can find out more information at: About psychiatric medication – Mind
There are a number of techniques for managing anxiety which you can recommend to patients, such as calm breathing techniques: an example from Headspace can be viewed here: Headspace: Mini Meditation
Progressive muscle relaxation is another technique to help anxiety which is demonstrated in this video: Progressive Muscle Relaxation
There are a number of other helpful resources you can share with patients if appropriate, for example:
Clear, effective communication from healthcare providers is essential in building a relationship of trust and ensuring patients feel informed and confident in their medical care.
A range of resources offering guidance on communicating with patients, service users and people affected by cancer are available via the cancer communications resource hub from NHS England’s Workforce, Training and Education directorate.
Below, Neil and Kirk share their insight on how healthcare professionals can communicate with and support their patients.
In this video Neil, a retired GP and ALK patient, shares his perspective on how healthcare professionals can best support patients. Neil discusses:
ALK+ lung cancer patients are often younger than the average lung cancer patient: the median age of patients with ALK-rearranged NSCLC is given as 50-52 (LoPiccolo et al., 2024) and many patients are much younger.
It is important to remember that when faced with a cancer diagnosis, younger patients may have additional concerns and worries such as fertility, careers, finances or caring for young children. As lung cancer is less common at a younger age, they may feel isolated and find it difficult to talk to their peers about their situation.
Listening to your patients’ concerns and encouraging them to talk is key, as well as signposting them to additional support. The ALK Positive UK charity has a regional support group and offers regional meet ups and an annual conference which could be helpful to younger patients wishing to meet others with ALK+. Supporting Patients of ALK+ Lung Cancer | ALK Positive UK
Supporting someone with cancer, whether you are their carer or a family member or friend who wants to help, can bring about a range of different emotions. Macmillan offers a range of resources to help carers, from emotional support to practical support.
Access the resources here: Supporting someone with cancer | Macmillan Cancer Support
Patients may have many more questions about living with cancer, relating to their specific circumstances. Below are some of the questions they may have, with signposting links you can provide that may help. Further support is also available via the ALK Positive UK charity.
General information can be found here: Fertility and cancer | Macmillan Cancer Support
Patients may be eligible for help with NHS costs; they can check here: Check what help you could get to pay for NHS costs – NHSBSA
They may be eligible for a Personal Independence Payment (PIP), which can help with the extra living costs of a long-term health condition: Personal Independence Payment (PIP): What PIP is for – GOV.UK
This ALK Positive UK resource offers information on facts and myths about cancer and diet: Cancer Diets: Myths and More
Cancer Research UK also offers information about cancer and diet: Diet and cancer | Cancer Research UK
Many of ALK Positive UK’s members enjoy travelling extensively. This page offers advice on travelling and the extra planning needed: Travel Advice | ALK Positive UK
If diagnosed with a brain metastasis/metastases, patients will usually not be allowed to drive for a period of time, depending on the tumour and the treatment they have. This publication from ALK Positive UK’s DVLA advisory panel may be a helpful resource for patients. Advice for patients on brain tumours (metastases) and driving
