Introduction: The health psychology service
As a psychotherapeutic counsellor based in an acute hospital trust, I offer inpatient and outpatient counselling to patients who have been diagnosed with cancer. As part of my role, I act as a link worker with the skin cancer team, attending clinics to support patients and undertaking therapeutic work on an ongoing basis. I work in a team of therapists, including psychologists, psychotherapists, art therapists, drama therapists and counsellors, all of whom offer talking therapy within their existing modalities. Our team works therapeutically with any inpatient referral for the duration of the patient’s stay. In addition, we are funded to work with the oncology department on an ongoing basis, allowing us to see some oncology patients as outpatients, post discharge.
Skin cancer is an area of oncology that I feel passionately about. The impact of the disease is profound, and I feel privileged to be able to support people who are often living with the unknown. This article aims to highlight the psychosocial impact of living with skin cancer and suggests some pointers for working with clients affected by it, based on my own experiences as an integrative psychotherapeutic counsellor. My core framework is centred on humanistic, relational and psychodynamic theories, leaning towards psychosynthesis within a relational understanding. Having an integrative approach has enabled me to develop specific tools from a range of theories that I often use within my core framework, including CBT and existentialism. In this article, I provide a vignette of my work with a client with skin cancer, in order to illustrate some of the challenges and privileges of working with this client group.
What is skin cancer?
Skin cancer is considered to be the uncontrolled growth of abnormal skin cells that lead to malignant tumours appearing. There are three main types of skin cancer: basal cell carcinoma (BCC), squamous cell carcinoma (SCC) and melanoma. BCC is the most common, but melanoma is considered to be more serious because of the risk it can pose if it recurs or metastasises within the internal organs. Commonly, skin cancer is often understood as a mole that needs to be removed, owing to it becoming abnormal. However, it can appear differently to this, emerging as lumps and discolouring to the skin, for instance. The most common form of treatment for skin cancer is dermatological or surgical, resulting in the removal of the affected area and surrounding cells. This means patients often face changes to their physical appearance. Sometimes such changes can be significant.
Skin cancer is perhaps not as well known as other types of cancer. Patients commonly talk about the dismissive responses they receive from others, which would appear to be based on misconceptions. For example, common messages include: skin cancer only happens when people sunbathe incessantly, skin cancer is rare, it can just be ‘cut away’, or it is not life threatening or serious.1 The statistics alone would suggest skin cancer is not rare; Cancer Research UK warns incidences are projected to rise by seven per cent between 2014 and 2035, with annual increases in the UK believed to be about six per cent annually.2
The psychological impact of skin cancer
It may not be surprising that the psychological/psychosocial impact of cancer is significant. Research shows co-morbid depression and anxiety is more prevalent in cancer patients, at between 14 and 56 per cent, which is higher than within the general population. This suggests there is a greater need for psychological input. Indeed, a recent study3 showed that people’s recovery from physical health conditions is faster if patients have good mental health.
There is limited research into the specific psychological impact of skin cancer, and the effectiveness of psychological interventions is not clear. However, a 2013 study showed that, ‘Skin cancer patients are characterised by a threefold increased likelihood to develop psychological disease than healthy controls.’ 4 This finding fits with what we understand about the psychological impact of cancer generally and in many ways reflects my experience of working with this patient group. It does not surprise me that the most commonly reported psychological disorders are depression and anxiety, with anxiety being the most prevalent. A number of variables are thought to be predictive of psychological distress in people with melanoma.5 These include being of a younger age, female, living alone, unemployed, having previous mental health issues and an avoidant coping style.
Vanessa is a melanoma patient with whom I have been working on a fortnightly basis for some 18 months. Vanessa was 28 years old and in the early stages of pregnancy when she was diagnosed with melanoma. She was referred to psychological therapies during an inpatient stay, following a surgical procedure under local anaesthetic to remove the affected skin and tissue on her lower leg. Vanessa was awaiting biopsy results to see whether further surgery was needed, which could involve the removal of a larger surface area of tissue, followed by a skin graft or skin flap (a procedure whereby healthy skin or tissue is used to cover a wound). The ward staff indicated that Vanessa would benefit from psychological support, due to experiencing low mood. At the time of referral, Vanessa was 18 weeks pregnant.
Upon entering the ward to meet Vanessa for the first time, I was aware of my own feelings and shock that someone so young who was having a baby could possibly be faced with having skin cancer. What would this mean for her and for the baby, and what were the risks? A verbal handover from a staff nurse on the ward heightened my attunement to the intense sadness that her situation had evoked in ward staff.6 I felt my stomach reacting to what I heard when I asked the staff nurse about the risks to Vanessa and her unborn baby. I learnt that Vanessa needed a specific scan that would involve injecting dye into her body that would enhance images of the melanoma. The dye would pose a risk to her unborn baby, in that it could discolour the baby’s eyes and teeth. There were also concerns that hormonal changes during Vanessa’s pregnancy could have affected the cancer itself, possibly expediting growth. The staff nurse began to cry as she relayed this information to me; it was then that I realised the profound impact of skin cancer.
Having introduced myself to Vanessa, I became aware that she was unable to have aspects of treatment that would usually be offered if she were not pregnant (such as an MRI scan and surgery under general anaesthetic) because of the risks they could pose. I wondered how Vanessa felt about this and became aware of her wanting to protect her baby, to return to work and care for her three-year-old daughter. This situation felt familiar; working with cancer patients every day, I often hear the need for people to get back to their sense of ‘normal’, almost a desire to reclaim an identity they held almost unconsciously, which is rivalled by a disease that can change everything. Often, clients say all they want is to be known by their name and seen as this, rather than as a cancer patient.
I was able to offer Vanessa ongoing outpatient counselling once she was discharged. When we met again in the therapy room, I became acutely aware of Vanessa’s concern for her baby, but not so much for herself. I gently held her while I explored this, as I was conscious of not wanting to take down her defences at a time when I could sense her vulnerability. As the weeks passed, Vanessa and I started to gently explore her experience of having skin cancer. She was able to talk about the fear and guilt she felt, concerned that she could die and leave her partner alone and her children without a mother. Some of this fear was connected to not being able to have some of the treatment, meaning that she needed to wait until she had delivered her baby to fully know whether the melanoma was still present. This was the part of our work that felt so unique for Vanessa, and I always felt a sinking feeling around this during our sessions.
As our work progressed, Vanessa spoke of her decision to progress to full term with her pregnancy. The medical team had highlighted that this could put her at greater risk, but agreed that they would work with her pregnancy as much as possible. Vanessa spoke of the risks to the baby openly in therapy, sharing how some of them were not known to her, as she had been told by her surgical and oncology team that her situation was highly unusual. We explored how it felt for Vanessa to be in this situation and for the team to be finding ways to treat her and keep her baby safe. The importance of trust was something that became apparent: the trust that Vanessa had in her team, her trust in the process of treatment and her trust in the surgeon to ‘hold’ her and the baby throughout treatment.
The adjustment process
Vanessa’s pregnancy went to full term, and shortly after this, she was able to have a scan that showed her to be cancer-free. Vanessa was told that she would continue to be monitored for some time; she would have regular scans and check-ups in the skin cancer clinic, and the oncology and dermatology departments.
However, being told that you are cancer-free does not end the worry or trepidation that cancer may recur, or metastasise to another part of your body. Vanessa was able to identify this in our work; she noticed the change in her outlook on life and how she viewed her own life expectancy. However, more than this, Vanessa had entered what I feel is the hardest part of psychological recovery, particularly in relation to cancer. This is the period where most or all of the treatments have ended, and this can be experienced as being in freefall. Medical professionals move away, as they have fulfilled their roles for now, and the patient moves into a phase of ‘watchful waiting’.7
Some clients report relief that they no longer have to endure what is often demanding and painful biological or surgical treatment. However, for many, there is a fear that receiving no treatment means the cancer will return; this is almost akin to being on death row – knowing you will die, but not knowing when. Holding this in therapy is delicate. I like to talk about the ‘adjustment process’. I do not use the word ‘acceptance’, as I am not sure this really helps when people are grappling with life and death, or not knowing. Drawing from narrative therapy, I see adjustment to having had or living with cancer to be like weaving the experience itself into your story; over time, it will not be the current chapter.
For Vanessa, having a new baby and going back to work complicated the adjustment process, meaning that her focus quickly moved onto day-to-day action and routine, rather than having the opportunity to slow down and identify opportunities to be with her emotions and feelings of grief.
I find staying with clients throughout this time to be really integral, as regaining control and starting to work with the adjustment process is complex and delicate. As a relational therapist, I find the strength is in the therapeutic relationship, which allows the client to start to trust the process of therapy and wonder how it feels to have control through being with and in their body, while finding their voice.
Working with the body
Working with appearance is prevalent with skin cancer, as often it is not only the surface of the skin that is removed, it is also what lies beneath, in the tissue itself. Not only can a wound be felt and seen, exposing vulnerable parts of the self, it can also serve as a reminder: a reminder of what you have been through, a reminder of what you are living with, of changes to physical appearance and to sense of identity. I often suggest that people ask a family member or friend to take pictures of their wound regularly. This promotes acknowledgment of progression, as does asking the client how the affected part of the body feels when touched, as time progresses. These can be useful aids when working with loss and adjustment to how the body looks in the here and now, and in accepting permanent physiological changes.
It’s important to acknowledge the context of physical appearance and hegemonic beauty ‘ideals’ held within mainstream Western media. Research exploring cancer and changes to physical appearance by Christabel Homewood8 highlights the pressures that women face to look a certain way. She explores the idea that our physiological presentation is a canvas upon which we attempt to paint a picture of who we are. This suggests that, should physical appearance change as a result of cancer, there is a need to renegotiate an identity or sense of self. This is echoed by Frida Furman,9 who writes about the psychological need for ‘consistency’ in self-identity throughout our life and the threat that cancer poses to this. I frequently hear how pre-cancer identity becomes lost in the minutiae of treatment. Patients often seem to experience a sense that, during treatment, their bodies cease to be ‘theirs’. My clients commonly express a sense of loss of control and a desire to reclaim not just ownership over their body, but also to return to their pre-cancer appearance.
For Vanessa, the surgical procedure on her leg required her to have a skin flap. The appearance of her leg has changed considerably and this is something that remains a live issue in our work. A tattoo that was significant to her was altered as a result of the removal of the melanoma and the reconstruction of her leg. Vanessa experienced this as a revealing and exposing aspect of her plastic surgery.
Vanessa is aware of the need in her to cover up her leg, in contrast to how she felt about her body pre cancer. She is able to speak of her pre-cancer identity with confidence, exploring a desire to return to this, coupled with the knowledge that there is no way of going back. In the earlier phases of her treatment, Vanessa experienced swelling in her leg, which resulted in her being in a wheelchair for four months. She is now mobile, the swelling has gone down and her wound has changed in size and colour. Together, we have explored her feelings about her body throughout the various phases of her treatment. While Vanessa is yet to have fully embodied her experience, she has made significant progress in being able to explore what her appearance means to her and her sense of self.
Working with the body can enable clients to start to regain a connection with the parts of themselves that they might feel have let them down or from which they have become disassociated. I often use relaxation techniques and mindfulness exercises to help facilitate a holistic connection with self. Mindfulness is simply a way of working with the here and now, by gently bringing attention to the present moment and acknowledging feelings, thoughts and bodily sensations. I use short mindfulness exercises as a way of helping to regulate the painful feelings that working psychologically can evoke and to gently draw attention to the body and its changes, encouraging adjustment to these.
When working with clients facing skin cancer, the following points may be useful to bear in mind:
- Never underestimate the power of simply ‘being with’ your client.
- It is important to acknowledge (internally and in supervision) that skin cancer patients are met by many misconceptions about what they are facing and how serious it can be. This can almost be a marginalised response.
- Build a narrative with your client in regards to their story and understanding of their diagnosis, treatment and prognosis. You do not need to be an expert on the medical aspects, but it can be useful to look at NHS literature on skin cancer and the treatment options.
- Consider with your client whether they feel able to take pictures of their wounds post surgery or treatment, with a view to progressively building up a picture diary of how they change over time. This can facilitate awareness of change and progression. Consider with your client whether this may be traumatising or helpful for them.
- Help clients to name that there has been a change to many – if not all – aspects of their life. With change comes loss, and this can elicit a deep grief. Help clients process their grief and start to integrate this into their story.
- Consider the wider contextual and cultural aspects of physical appearance and what your client’s pre-cancer identity meant to them. How can they embody their experiences as a part of adjustment? Working with the body can be a useful way of approaching this, as can mindfulness exercises.
I am hopeful that, in presenting extracts of my work with Vanessa, I have demonstrated the profound impact that skin cancer can have on an individual’s life. Loss and grieving are often present in this work: loss of life as we know it, changes to one’s physiology, loss of self, loss of hope, loss of income, and changes to the dynamics/ relationships in your life. This is not an exhaustive list. I am aware of the deep grief associated with loss and the desire to return to life as it was before cancer.
As a society, more needs to be understood and learnt in regards to this particular type of cancer. I see cancer as a community-based issue and I am hopeful that the more we can talk about skin cancer, the more we can understand. This will not only educate us, but also provide a holistic support system for those who are living with this life-changing illness.
Nicola Swales is an integrative humanistic psychotherapeutic counsellor, working within the Psychological Therapies Service at Broomfield Hospital, Mid Essex Hospital Services. She has worked in private practice, third sector voluntary organisations, IAPT services and forensic services. Nikki is currently developing an MPhil/PhD proposal to further explore the psychological impact of skin cancer.
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