Deborah Fenlon
Dept of Nursing, College of Human and Health Sciences, Swansea University, Wales, UK
Email: d.r.fenlon@swansea.ac.uk
The concept of cancer ‘survivorship’ has now been around for a couple of decades and the consequences of cancer and its treatment have meant that, for some people, whether they are living with active disease or not, cancer has become a chronic illness that has an ongoing impact on their quality of life. However, it is less clear that health services and health professionals have adjusted their care provision to support people with cancer as a chronic illness. On the contrary, the emphasis on early discharge from follow up in order to prevent overburdening of hard-pressed secondary care services, has meant that care is focused more and more on the acute part of the cancer experience. In 2011, Richards et al called for new models of care to optimise health related quality of life in cancer survivors and high-quality research to underpin this work. In this ecancer Special Issue we turn attention to the current situation and look at research that considers some of the ways in which we are beginning to support people to deal with these consequences.
There are now more than 12.5 million people considered as cured of cancer in Europe (Lagergren et al 2019). Long term consequences, however, include heart failure, chronic heart disease, osteoporosis, diabetes and hypothyroidism. (Khan et al 2011). We know that cancer survivors have higher use of health services than similarly aged controls (Maddams et al 2011) and that they are particularly vulnerable at the end of treatment, lacking confidence to access support, return to work etc (Foster and Fenlon 2011). The list of problems faced by cancer survivors is now well known, including fatigue, pain, urinary and bowel problems, hot flushes, genito-urinary symptoms, cognitive dysfunction, peripheral neuropathy, lymphoedema and the psychological problems of anxiety and depression, all underlined by an ongoing fear of cancer recurrence.
What has been less talked about is how these problems not only have an ongoing impact on people’s daily lives, but how they create a fundamental disruption to a person’s biography. In his seminal work on chronic illness, Bury (1982) talked about how people diagnosed with a chronic illness are faced with a recognition of the world of pain and suffering, which is normally only seen as a distant possibility or the plight of others, with a profound disruption to the ‘taken for granted assumptions and behaviours’ of life. There is a loss of the expected life course, such that a fundamental re-thinking of the person’s biography and self-concept is involved.
Current representations of cancer are that cancer is an ‘invader’ of one’s body, that has to be ‘fought’ and the ‘battle’ is either ‘won’ or ‘lost’. While it brings uncertainty, suffering and raises questions of mortality, in the same way as other chronic illness, a cancer diagnosis differs in that it is legitimised as a serious illness, so that people are given allowance for being sick and special recognition within society. In general it is perceived as an acute illness and current health care provision is situated within this context. Information provision is all about treatments on offer and which are most likely to achieve a cure. Information on side effects is given, but a full understanding of how people’s lives are likely to change for the long term is rarely understood at this stage.
It is then expected that, after a period of time, people will recover and take up their role in society in the same way as they did before. What is not expected is that cancer survivorship brings many changes that were not anticipated. There is a developing realisation that the consequences of treatment may be long lasting or permanent; that on-going problems with the body are not external and now need to be incorporated into a new image of a changed body and the expectation of others that one should be ‘back to normal’ brings difficulty in legitimisation of these long-term changes. These characteristics are in line with other chronic illnesses as outlined by Bury (1982), yet cancer is not perceived as a chronic illness. Hubbard and Forbat’s (2012) work with cancer survivors tell us that cancer is disruptive to everyday life many years after diagnosis and treatment, a persistent and on-going threat and a disease that invokes a change to self, disrupting anticipated identity, changing what they expected the future would bring. It is time, therefore, for us to reconceptualise cancer survivorship as a chronic illness for some, and for health care professionals and services to refocus on chronicity after initial cancer treatment has ended.
In this edition we bring together a number of papers which begin to address some of the ongoing problems that cancer survivors face and explore evidence on some new models of care that may be of benefit. We note from Watts and Bower (2019) that the transition from patient to survivor is still characterised by trepidation and uncertainty. People experience significant ongoing effects of treatment for which they are ill prepared. While they try to return to normal they begin to realise that the possibility of regaining their previous normal is no more than a pipe dream. They describe feeling depressed, lost, isolated and alone and wanted better preparation and support from health professionals for this phase. Millan et al (2019) discuss the fact that concerns people have about the fear of cancer returning are there from diagnosis. They suggest that addressing these fears early on may reduce the chance of them becoming a problem in the long term.
Dawson et al (2019) recognise the profound disruption that people with head and neck cancer may experience after surgery. The very fundamental aspects of being human, such as speech and eating may be disrupted in this group. Dawson et al (2019) recognise the liminal space which people experience during their stay in hospital and discuss introducing ways to help people move beyond this liminal existence and launch themselves back into the world with a new and changed identity.
Many of the long term and unexpected changes following cancer treatment concern bodily issues that may be seen as stigmatised or embarrassing, such as sexual difficulties or urogenital symptoms. Nelson et al (2019) describe how initially there is support for people with prostate cancer and their families, but that support networks fade away over time. They also describe a need for more access to professional emotional support. The particular problems associated with prostate cancer, such as incontinence and erectile dysfunction, make it difficult for people to gain ongoing support because of the stigma associated with such problems. Sexual problems may be experienced by many people undergoing cancer treatments, including those with haematological malignancies, as described by Eeltink et al (2019) and patients express a desire to be better informed about these problems. There is a strong feeling that health professionals should raise these problems rather than just reacting to what is brought to them, as patients are often reluctant to discuss potentially embarrassing issues. For women, hormonal changes brought about as a result of treatment often lead to a dry and fragile vagina. Knight et al (2019) discuss how laser therapy is a potential treatment that could bring relief for this problem.
In some places survivorship programmes are in place for cancer survivors, and Flores et al (2019) describe a comprehensive programme that is possible where adequate health insurance provides for this kind of support. Elsewhere, with more limited resources, health care providers may need to develop more cost effective and innovative solutions. Our powerful first-hand account by O’Riordan (2019) shows that some of this may be brought about by a change in attitude from health care professionals to understand the profound changes that are brought about in people who undergo cancer treatment.
The papers in this edition show that, although we have been talking about cancer survivorship for a long time, little has changed since Richards et al (2011) called for changes in care, and people are still describing their need for ongoing help and support post primary treatment. While there is an increasing amount of research describing the needs of people in the long term after cancer, and an emerging literature on models and interventions to support people with these needs, there is still much to be done to move from the focus on primary diagnosis and treatment, to considering what the long term impact will be on the individual and helping to prepare people for their life after cancer. Cancer survivorship needs to be treated as a chronic condition and interventions need to be developed that help people to adjust to this new life, where the fear of recurrence and physical problems may be long lasting or even permanent, where much needed support from others diminishes over time and their normality is something that needs to change.
References
Bury M (1982) Chronic illness as biographical disruption Sociology of health & illness 4 (2) pp167-182
Dawson et al (2019) Liminality and head and neck cancer: core concepts and applications for clinical practice ecancermedicalscience 13 986 doi10.3332/ecancer.2019.986
Eeltink et al (2019) Recommended patient information sheet on the impact of Hematopoietic Cell Transplantation on sexual functioning and sexuality ecancermedicalscience 13 987 doi 10.3332/ecancer.2019.987
Flores et al (2019) Building a Comprehensive Cancer Survivorship Program
ecancermedicalscience 13 992 doi 10.3332/ecancer.2019.992
Foster C and Fenlon D (2011) Recovery and self-management support following primary cancer treatment Br J Cancer 105 (S1), p.S21.
Hubbard G and Forbat L (2012) Cancer as biographical disruption: constructions of living with cancer. Supportive Care in Cancer 20 (9) pp 2033-2040
Khan NF, Mant D, Carpenter L, Forman D and Rose PW (2011) Long-term health outcomes in a British cohort of breast, colorectal and prostate cancer survivors: a database study Br J Cancer 105 (Suppl 1) S29–S3
Knight et al (2019) A systematic review of laser therapy for vulvo-vaginal atrophy (VVA) /genito-urinary syndrome of menopause (GSM) in breast cancer survivors ecancermedicalscience 13 988 doi 10.3332/ecancer.2019.988
Lagergren P, Schandl A, Aaronson NK, Adami HO, de Lorenzo F, Denis L, Faithfull S, Liu L, Meunier F, Ulrich C; (2019) Cancer survivorship: an integral part of Europe's research agenda. European Academy of Cancer Sciences. Mol Oncol. 2019 Mar;13(3):624-635. doi: 10.1002/1878-0261.12428
Maddams J, Utley M, Møller H (2011) A person-time analysis of hospital activity among cancer survivors in England Br J Cancer 105 (Suppl 1) S38–S45
Millan et al (2019) An observational mixed-methods approach to investigate the fear of cancer recurrence cognitive and emotional model by Lee-Jones et al with women with breast cancer during radiotherapy treatment ecancermedicalscience 13 984 doi 10.3332/ecancer.2019.984
Nelson et al (2019) The experiences of giving and receiving social support for men with localised prostate cancer and their partners ecancermedicalscience 13 989 doi 10.3332/ecancer.2019.989
O’Riordan (2019) Reflections from a breast surgeon with breast cancer on how to improve cancer care ecancermedicalscience 13 983 doi 10.3332/ecancer.2019.983
Richards M, Corner J and Maher J (2011) The National Cancer Survivorship Initiative: new and emerging evidence on the ongoing needs of cancer survivors Br J Cancer 105 S1–S4 doi:10.1038/bjc.2011.416
Watts and Bower (2019) Still lost in transition: a qualitative descriptive study of people’s experiences following treatment completion for haematological cancer in Wales, UK ecancermedicalscience 13 985 doi 10.3332/ecancer.2019.985
