Authors: Hilde M. Buiting, PhD (1,2,3,), Phyllis N. Butow, MPH, PhD (4) NOTE: The authorship and affiliations for this blog post were…
Campmans, XJ1, Van den Heuvel, M2, Sonke, GS3,4, Buiting, HM3,4,5
- Amsterdam UMC, Department of Global Health, Amsterdam, the Netherlands
- Radboud UMC, Department of Thoracic Oncology, Nijmegen, the Netherlands’
- Antoni van Leeuwenhoek/Netherlands Cancer Institute, Department of Medical Oncology, Amsterdam, the Netherlands
- University of Amsterdam, Amsterdam, the Netherlands
- O2PZ, Platform of Palliative care, Amsterdam, the Netherlands
The prevalence of patients living longer with incurable cancer is rising.1 Due to improved options of anti-cancer treatment, most of them are able to live a long and meaningful life before reaching the end-stage of their disease trajectory. For these patients, the setting at a certain moment partly shifts from a ‘clinical/hospital’ setting towards the ‘home’ setting. Taking care for your own health again while being ill requires lifestyle adaptations and accordingly, responsibility.2
In this Blogpost we discuss and reflect on how patients living longer with incurable cancer can take responsibility for their own health, including their body image (if they desire to do so). This will be illustrated with quotes, retrieved from an interview-study about patients’ experiences living longer with incurable cancer.3
Being diagnosed with incurable cancer and being treated with various regimen may go along with burdensome mental (like uncertainty) and physical symptoms.4 It may also go along with unexpected beauty and appreciation.4 Some symptoms, fairly common for every cancer-patient, require obvious lifestyle changes, such as rest.2 5 6Other changes, such as their changing bodies – sometimes also experienced as ‘vulnerable‘, ‘looking sick’7 or a boosting change of their personal identity – can be associated with anxiety. This changing body may be more difficult to effectuate in lifestyle changes.8Interestingly, few of our patients reported to have made drastic changes.
“No. It just happened the way it did. I did not think like ‘Oh no, I’m ill and now I have to change everything, no. It was not like that.” (Male, prostate cancer patient)
It seemed as if they either consciously or unconsciously managed their disease. By growing accustomed to having cancer9 and by implementing new habits such as daily intake of medication and sleeping longer, a second nature aroused. In adapting their new lifestyle the experience of external pressure from being perceived from ‘healthy or normal’ to ‘someone with cancer’ could be perceived as a barrier. Moreover, by experiencing less self-esteem because they were having cancer, they however also stigmatized themselves, being afraid to talk about their disease, even with close relatives. Although this can be regarded as an appropriate way to live a high-quality life, it seems warranted to be able to discuss and express dilemmas with either close relatives or somebody else in this disease-stage.4
Changed bodily appearances have been shown to also impact well-being as well as their relation with themselves and significant others. This was also the case among our patients and is in line with the findings of a study of Firmin et al who identified two coping strategies to manage cancer,10 arguing that cancer patients either double down on rigorous lifestyle changes or adopt a ‘carpe diem’ attitude. The latter happened most often in our group, mostly because they considered their lifestyle as good already. Female patients in our explorative study seemed to be more inclined to experience their disease as something negative and sooner experienced a (negative) body image, possibly enforced by the western view of femininity.11 12
“Yes, I had a hard time to cope with the mastectomy. Because it’s something physical, and it’s the first thing people notice from the outside.” Patient 2 (breast cancer)
Male patients, in contrast, more often associated their new body with (decreased) physical health, sexual dysfunction and being fit. Despite these physical changes, which also effected their sexual desires, male patients spoke more lightly than women about their physical condition; they simply wanted to continue life and tried to prevent to be ‘chronically distressed’ because of their disease. In our previous study4 we described that some patients in fact did experience chronic distress. They (purposefully) stayed vigilant by retaining optimism.13 Just like the statements in Kooken et al our findings also illustrate that to be able to stay vigilant, continuous energy and effort is required from the patient as well as their close environment.
Patients in our study seldom mentioned healthcare professionals who (could have) assisted them. They primarily seemed to worry about their physical condition and appearance and less often adapted their eating behavior. ‘Looking good’ is ‘feeling good’ is a well-known statement, and could be a possible explanation for these findings, e.g., a primary focus on being fit and to look good could will possibly change your nutritional behavior as well.
These explorative findings, together with the realization that the need to stay optimistic to be able to deal with enduring disease trajectories such as metastasized forms of cancer, warrants more attention. Partly, because of the increased frequency of chronic diseases and because enduring disease trajectories not only impact patients’ well-being but because it can also impact well-being of people in their close environment.14 The same holds for other options to continuously stimulate people to combat and possibly heal their disease by staying in optimal mental health also.15 Possibly, chronic care consultations can be helpful in this too.16
1. IKNL. Cijfers over kanker 2020 [Available from: www.iknl.nl]
2. Rainbird K, Perkins J, Sanson-Fisher R, et al. The needs of patients with advanced, incurable cancer. Br J Cancer 2009;101(5):759-64.
3. Buiting H, Campmans X, van Alphen E, et al. Living with COVID: What we learned from patients with incurable cancer during challenging times. Blog post: BMJ Humanities (2022).
4. Buiting HM, van Ark MAC, Dethmers O, et al. Complex challenges for patients with protracted incurable cancer: an ethnographic study in a comprehensive cancer centre in the Netherlands. BMJ Open 2019;9(3):e024450.
5. Audulv A, Asplund K, Norbergh KG. Who’s in charge? The role of responsibility attribution in self-management among people with chronic illness. Patient education and counseling 2010;81(1):94-100.
6. Maggini S, Wintergerst ES, Beveridge S, et al. Selected vitamins and trace elements support immune function by strengthening epithelial barriers and cellular and humoral immune responses. Br J Nutr 2007;98 Suppl 1:S29-35.
7. Bahrami M, Mohamadirizi M, Mohamadirizi S, et al. Evaluation of body image in cancer patients and its association with clinical variables. J Educ Health Promot 2017;6:81.
8. Brenne E, Loge JH, Kaasa S, et al. Depressed patients with incurable cancer: which depressive symptoms do they experience? Palliative & supportive care 2013;11(6):491-501.
9. Merwijk R. Kanker voor beginners: Thomas Rap 2020.
10. Firmin MW, Pathammavong MB, Johnson CB, et al. Anxiety experienced by individuals with cancer in remission. Psychol Health Med 2014;19(2):153-8.
11. Wondergem M, Lieben G, Bouman S, et al. Patients’ satisfaction with facial prostheses. Br J Oral Maxillofac Surg 2016;54(4):394-9.
12. Davis K. The making of our bodies, ourselves. US: Duke University Press 2007.
13. Carver CS, Scheier MF, Segerstrom SC. Optimism. Clinical psychology review 2010;30(7):879-89.
14. van Eijk M, de Vries DH, Sonke GS, et al. Friendship during patients’ stable and unstable phases of incurable cancer: a qualitative interview study. BMJ Open 2022;12(11):e058801.
15. Maté G, Maté D. Mind in the lead: The possibility of healing. The myth of normal: Trauma, illness and healing in a toxic culture. London: Vermilion 2022.
16. Arreskov AB, Lindell JF, Davidsen AS. General practitioner responses to concerns in chronic care consultations for patients with a history of cancer. Journal of Health Psychology;0(0):13591053211025593.