Philip Alexander is an experienced counsellor and cognitive behavioural psychotherapist who has worked in the bone marrow transplant team at King’s College Hospital since 2012. Philip spoke to us about the fear of cancer recurrence course he runs at King’s and how this can help patients.
Can you tell me about your career and how you came to specialise in haematology?
I was a palliative care social worker for seven years, during which I trained as a counsellor. I then secured a position as a cancer counsellor at another London Trust, during which I trained as a CBT therapist. Whilst working there I was asked to see haematology patients on a goodwill basis and this is how I gained my interest and experience in working with this patient group. I was appointed to my current role at King’s in 2012.
What are the common psychological concerns of patients you’ve seen who have gone through a stem cell transplant?
Having to adjust to the situation, both practically and psychologically, and learning how to cope, is stressful and challenging. A number of emotions can arise: low mood, anxiety, worry, grief and anger.
Many losses and changes have to be accommodated. Often people grieve for their ‘old self’ and have to adjust to the idea of a ‘new normal’. Beliefs about the life they expected need to be adjusted, and this necessary change in ‘mindset’ is what drives a significant proportion of patients’ emotional distress.
Can you tell me about fear of cancer recurrence (FCR)?
A definition would be ‘fear that the cancer could return in the same or another part of the body’. A degree of fear of recurrence is normal, but if the anxiety becomes persistent, difficult to control, and distressing in its own right, it will likely affect someone’s quality of life. It would then be seen as problematic and requiring support.
In some instances, unhelpful health behaviours develop, like excessive monitoring and checking for signs and symptoms of recurrence. Or, at the other end of the spectrum, avoidance of symptoms and follow-up appointments because of fear that recurrence will actually be confirmed.
How common would you say FCR is amongst transplant patients?
Most of the (limited) data about FCR derives from general cancer. To date we’ve been unable to study or quantify it formally in transplant patients here at King’s, though now that our psychological services are expanding we are hoping to do so in the future.
From my experience of working with transplant patients for the last seven years, I would say that it is very common. Although I should say that its severity and persistency does vary; it isn’t necessarily ‘problematic’ or ‘clinically significant’ in everyone. By this I mean that some people find it manageable and wouldn’t say that it affects their quality of life, whereas for others it is more of an issue and they require psychological support focused on this problem.
What was your motivation to develop the FCR course?
I collaborated with colleagues from the psycho-oncology team at GSTT in 2015 to develop a group-based intervention using a psychological approach called ACT (acceptance and commitment therapy). We all used ACT in our individual practice and believed that it would lend itself well to a group-based intervention focusing on FCR. This model is often used for patients with chronic pain or who are terminally ill. It is useful for coping with things that are outside of one’s personal control.
The model teaches you how to relate to thoughts in a more detached way and, using mindfulness, to increase ‘present moment awareness’, which is a focus on the here and now. ACT also emphasises another important strand of wellbeing, which is identifying what really matters to you in life and committing to doing more that aligns with this, rather than being caught up in worry and rumination.
Since 2015 my colleagues and I have delivered the intervention in different hospitals and to different patient groups. My version of the course has focused on blood cancer patients of course, and has gone through several updates and revisions as I have honed it for our patient group.
Can you tell me about the course?
The course is run once a year. There are about 8-10 people in every group and it’s a 6-week group intervention. Each session lasts two hours and you have to attend all sessions.
We’re very clear from the outset that our aim is not to eliminate fear of recurrence – that is simply not possible. We explain to participants that the aim is to help them to develop a different relationship to their thoughts, to the FCR, and to ‘live alongside it’. With a strong emphasis on people engaging more with their passions, the things they care about, we explain that we are teaching them about an approach to wellbeing that is actually useful for everyone.
Is there a time in the transplant process (pre/during/post) when people need most support with FCR?
FCR could occur at any point in a patient’s journey, but typically it happens when the treatment phase is over and people are adjusting to this. The degree of FCR can be influenced by a patient’s experience of their illness, treatment and symptoms. In other words, in some cases if people have had quite a rough time, FCR can be worse. This is thought to be because people worry about how they’d cope with treatment again.
Do you think there should be more awareness around FCR and its impact on patients and their recovery?
Studies have shown that FCR is one of the top concerns of cancer survivors. We also know that it can contribute to other mental health problems like depression and anxiety. It’s important for clinicians to be able to recognise it, and acknowledge that this is an emotional challenge for some.
What factors influence FCR?
There isn’t a huge amount of data but higher levels of FCR are associated with younger age, severe symptom burden during illness and treatment, and other concurrent emotional difficulties like anxiety, depression or post-traumatic stress. It is important, however, to remember that everyone’s experience of coping and responding to illness and treatment will be unique to them.
How do you measure it?
There are questionnaires like the Fear of Cancer Recurrence Inventory (FCRI), however, it is vitally important to have a dialogue with the patient in a holistic way, to understand what is going on for them.
What difference do you think this could make for patients?
The majority of patients have said they still continue to use some of the techniques, long after the group has finished. Obviously it is not a ‘magic bullet’ that stops them ever being worried, but it definitely plays a significant part in supporting their overall wellbeing and resilience.
Is the course available to most patients and how can people find out more?
We want people to have completed treatment at least three months prior to the start of the group, whether treatment is chemotherapy or a transplant, and to be in remission.
My colleagues at Guy’s and St Thomas’ are running the course at least once or twice a year for general cancer patients. We’re running it here at King’s for Haemato-Oncology patients.
You can find out more about the course by emailing Philip at: palexander1@nhs.net.