As contact with the medical team diminishes, there is an increasing uncertainty around who will answer questions about physical or emotional concerns, and whether it is safe to trust follow up appointments alone to detect new disease. Moreover, although the short-term side effects of treatment have eased, treatment often leaves a legacy. Long-term side effects may include fatigue, cognitive changes, and permanent changes to body image and sexual function. Common concerns and questions voiced by people in the post-treatment period can include: “How do I know the treatment worked and what does ‘worked’ mean?”; “I can’t trust my body anymore, it lets me down”; “I want to hear I’m cured but no one will say that”.
Receiving a cancer diagnosis, making decisions and coping with treatment can be all-consuming, and it is often only on completion of active treatment that one has time to reflect on what has happened and consider what it means for their future.
The chart on the next page visually represents a body of qualitative research which highlights that the period after active treatment can be potentially emotionally salient. People speak about the physical toll associated with undergoing cancer treatment and are focused on getting through it, taking it ‘one day at a time.’ As the chart demonstrates, people’s emotional wellbeing tends to remain stable throughout active treatment. However, upon completion of treatment, it seems to plummet for reasons mentioned above.
People may be reluctant to express their concerns to health professionals lest they be seen as ungrateful. Family and close friends may have had time to process their loved one’s cancer diagnosis throughout the active treatment period, and therefore view its completion as a milestone, alongside a willingness to return to established routines prior to the diagnosis.
Without an opportunity to discuss these feelings of unease with others who have gone through treatment, people can be left reeling from the experience and it can lead to a sense of disconnection from others, and impaired capacity for enjoyment.
The period after completion of treatment is often complex and people can benefit from accessing community support, particularly those involving meeting others with lived experience of cancer, in order to reflect and process this transition. Services delivered through the Third Sector have a long tradition of embedding peer support within their programmes for people affected by cancer. These programmes are led by health professionals and serve to promote emotional adjustment after active cancer treatment finishes.
What is being done to support patients post-treatment?
- The development and roll out of a group intervention to support breast cancer patients with fears of recurrence. The programme is based on an Acceptance and Commitment Therapy (ACT) approach which is centred on increasing emotional acceptance of difficult psychological experience and encourages re-connection with or identifying new values.
- It has been found to be helpful with a range of medical conditions. Given the inherent component of increasing tolerance for uncertainty, ACT could be of benefit for those experiencing fear of cancer returning.
- It is hoped that the lessons learned from these pilot projects can inform how we deliver psychological support to individuals affected by cancer and support their emotional wellbeing throughout all stages of their cancer experience.
- Dr Chris Hewitt, Consultant Clinical Psychologist with the Beatson West of Scotland Cancer Centre, secured two-year funding under Transforming Care after Treatment (TCAT) programme to pilot a service offering cognitive rehabilitation to individuals reporting cognitive changes which were significantly impacting their day to day life.
- In NHS Greater Glasgow and Clyde, there have been pilot projects with the aim of improving support for people post-treatment. People’s stories tell us that group interventions can be an effective way to support emotional adjustment. Intuitively, discussing these concerns amongst others who have a lived experience of a cancer diagnosis and all that goes with medical treatments can be helpful in this process of adjustment.
Dr Natalie Rooney Principal Clinical Psychologist