Defying the brain tumour: Achieving with and beyond the illness
On average, 275 teenagers and young adults (TYA), aged 15 – 24 are diagnosed with a brain tumour each year, with about 80% of these surviving for at least five years following remission(1). Along with the intensity of treatment, a brain tumour can have a substantial impact on quality of life(2).
This is influenced by lasting health effects such as fatigue, which often prevents the TYA from feeling able to maintain important aspects of life, including sports and hobbies, and returning to education. Feeling unable to ‘return to normal’ can be detrimental to physical, psychological, and social wellbeing(3).
More specifically, as GCSE’s, A levels and University are both common and important milestones within this age group, it is important to understand the extent of the impact that a brain tumour can have on achieving these goals. More than 50% of TYA survivors report problems with education following treatment, expressing that this is negatively influenced by the cancer(4). While the demands vary for each educational milestone, in addition to fatigue, issues with concentration and memory are commonly reported, as reflected by two TYA survivors:
“I pretty much went straight into my first year at University from treatment… I had very bad short term memory for that first year which made some things quite difficult”
“I couldn’t cope so left after three months because I had difficulty with concentrating a lot”
It is crucial to acknowledge that a return to education can not be rushed, either during or following treatment. However, this decision is often influenced by a desire to stay at the same level as peers. While maintenance of peer groups is significantly related to successful reintegration into education(5), due to the impact of possible lasting health effects, it is important that this return is manageable. Following the experience of one TYA survivor, initially they were concerned about leaving their peers, but with a plan in place, they achieved their GCSE’s and A levels, and are now in University:
“I didn’t want to be the person in the year group below, with all of my friends moving onto Sixth form… My teachers came up with a good plan for me, they divided up all of my time to work out what would be the best use of my time”
Still, each plan needs to be tailored to the individual, as what feels manageable for one person, may not resonate with another. The experiences of another TYA survivor highlight the potential to achieve educational goals at your own pace:
“At the start they would take me into the library and go in to one lesson for the day, then back to the library… It was a flexible fit, so all of the work was caught up with”
This way they could keep up with the workload without feeling overwhelmed. Ultimately, TYA survivors that have successfully returned to education experience significant declines in levels of distress(6). This emphasises the importance of finding a strategy that works for each individual, because with the right strategy, these goals can be achievable.
References:
1. Cancer Research UK. (2018). Young people's cancers statistics. [online] Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/young-peoples-cancers
2. Taylor, R. M., Pearce, S., Gibson, F., Fern, L., & Whelan, J. (2013). Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis. International journal of nursing studies, 50(6), 832-846.
3. Gibson, F., Mulhall, A. B., Richardson, A., Edwards, J. L., Ream, E., & Sepion, B. J. (2005). A phenomenologic study of fatigue in adolescents receiving treatment for cancer. In Oncology nursing forum (Vol. 32, No. 3).
4. Parsons, H. M., Harlan, L. C., Lynch, C. F., Hamilton, A. S., Wu, X. C., Kato, I., ... & Keegan, T. H. (2012). Impact of cancer on work and education among adolescent and young adult cancer survivors. Journal of Clinical Oncology, 30(19), 2393.
5. Pini, S., Gardner, P., & Hugh-Jones, S. (2013). The impact of a cancer diagnosis on the education engagement of teenagers–patient and staff perspective. European Journal of Oncology Nursing, 17(3), 317-323.
6. Kwak, M., Zebrack, B. J., Meeske, K. A., Embry, L., Aguilar, C., Block, R., ... & Cole, S. (2013). Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. Journal of clinical oncology, 31(17), 2160-2166.
7. Rimmer, B (2018). A phenomenological study of life after treatment in adolescent and young adult cancer survivors. MSc Health Psychology Thesis.