Mesothelioma is a relatively rare cancer that affects the pleura around the lung or around the abdominal cavity. According to Cancer Research UK, there are approximately 2,700 patients diagnosed with mesothelioma each year. Most patients (56%) diagnosed with mesothelioma are over 75 years old, however there are many cases where patients are much younger. For example, I cared for one patient who was 29 years old at diagnosis.
Peritoneal mesothelioma accounts for approximately 250 new diagnoses of mesothelioma a year. It is often diagnosed at a late stage due to patients having multiple investigations for other causes before a biopsy is taken and mesothelioma is confirmed as the diagnosis. Treatment options are limited for mesothelioma and the prognosis remains poor with most patients surviving approximately 18 months from diagnosis.
There is limited research around the prevalence of symptoms for mesothelioma patients, but many patients will experience one or more of the following symptoms: pain, shortness of breath, fatigue, weight loss, night sweats and cough.
In contrast, there have been several research studies examining the link between cancer and anxiety and depression. Grassi et al (2023) highlighted that anxiety and depression are the most common psychological symptoms in patients with cancer. This is irrespective of disease stage, type of cancer or phase of treatment.
It would be realistic to expect that many patients will experience anxiety and low mood at diagnosis and when treatment fails and their cancer progresses. But these may be short lived emotional responses to trauma or a life challenge. As clinicians, we need to be able to assess patients for psychopathological conditions such as anxiety and depression and ensure patients are signposted to the appropriate treatment if they are found to be experiencing one or more of these conditions.
The Minnow Study (Sherborne et al, 2023) looked at the mental health and wellbeing of mesothelioma patients and their carers. Of the 96 people interviewed, 29 showed a clinical level of depression and half the participants had clinical levels of anxiety. One third of participants also scored 44 or more on the PTSD scale, indicating a clinical level of post-traumatic stress disorder.
It has been shown that patients with anxiety and depression are less likely to adhere to treatment and have a poorer prognosis. Yet in the hospital setting, patients are not routinely assessed or screened for anxiety or depression. Many patients will have a Holistic Needs Assessment undertaken at the point of diagnosis, and if they score highly for anxiety or depression, they may go on to have a referral for counselling. But due to pressures in the NHS, they may have to wait several weeks to be seen. Patients are not screened for past mental health problems, and there is limited understanding about the complexity of anxiety and depression.
I work for a charity called HASAG which specialises in providing support and assistance to patients and families who have been affected by mesothelioma, asbestosis or pleural thickening. In my role as a Community Mesothelioma Nurse Specialist, I’m able to visit patients and their families at home, and the conversations that take place there are very different to those in clinical settings. I’m able to take the time to explore patients’ physical and psychological symptoms and signpost them to appropriate services.
HASAG have 7 counsellors who I can refer patients and their families to for bespoke counselling with minimal wait times. I also run several support groups alongside specialist nurses from Mesothelioma UK, and our focus this year has been on improving the mental health and wellbeing of patients and their families. We have recently partnered with the Royal Horticultural Society (RHS) to take the patients and carers in our support groups to 2 RHS gardens, as it has been shown that gardens and nature can be very therapeutic.
I am also in the process of working with 2 Mesothelioma UK nurses and a Mental Health nurse to undertake some research into anxiety and depression in mesothelioma patients. This includes the provision of a toolbox of therapeutic interventions that patients can use to manage their mental health. My aim is for all mesothelioma patients to have a formal screening for anxiety and depression using a validated assessment framework at different points in their cancer pathway: from diagnosis to end of first treatment, disease progression, at the end of all active treatment options and as part of advance care planning.
As humans, we are a mix of physical, psychological and spiritual components which all interplay and affect how we deal with trauma, ill health and dying. It is not enough to just treat the physical aspect of mesothelioma and disregard the mental and spiritual aspects. True holistic care which treats the whole person can help patients to live well even when they reach end of life.
References
Stephanie Ejegi-Memeh, Virginia Sherborne, Madeleine Harrison, Bethany Taylor, Michaela Senek, Angela Tod, Clare Gardiner, Patients' and informal carers’ experience of living with mesothelioma: A systematic rapid review and synthesis of the literature, European Journal of Oncology Nursing, Volume 58, 2022
Grassi L, Caruso R, Riba MB, Lloyd-Williams M, Kissane D, Rodin G, McFarland D, Campos-Ródenas R, Zachariae R, Santini D, Ripamonti CI; ESMO Guidelines Committee. Electronic address: clinicalguidelines@esmo.org. Anxiety and depression in adult cancer patients: ESMO Clinical Practice Guideline. ESMO Open. 2023 Apr;8(2):101155. doi: 10.1016/j.esmoop.2023.101155. Epub 2023 Mar 14. PMID: 37087199; PMCID: PMC10163167.
