By Lee Cubis – PhD Candidate in Clinical Psychology, Griffith University
A diagnosis of brain tumour, whether benign or malignant, has the potential to stop you in your tracks. The brain is such an important organ as it is our control centre. A brain tumour has the potential to impact on virtually any area of functioning, including: physical changes; sensory and motor disturbance; headaches and seizures; changes in thinking skills and memory; emotional reactions and behaviour; as well as the threat to life. Whether benign or malignant, a diagnosis of brain tumour can leave a substantial psychological impact.
It is important to acknowledge that no two people diagnosed with brain tumour will report the exact same experience, as everybody varies substantially in regards to their tumour size, type and location of the mass, treatment regime required, ongoing effects of treatment and other factors such as pre-diagnosis functioning and personality. It is common to ask yourself questions such as: What is happening here? What does this mean for me? What will the future hold?
Is there a difference in psychosocial experience?
Research indicates that 30 – 50% of people with brain tumour experience ongoing significant distress whether the tumour is benign or malignant. This distress can be present at diagnosis, treatment and all the way through the journey of living with brain tumour. Changes in physical or cognitive ability, loss of valued roles (e.g. work, independent parenting) and fear or uncertainty around recurrence are some of the concerns that may contribute to feelings of anxiety and/or depression following brain tumour.
Although the research is mixed, there does not appear to be a substantial difference between people diagnosed with benign versus malignant brain tumour when it comes to psychological wellbeing. Given that a benign brain tumour and associated treatments (e.g. surgery, radiotherapy, steroid therapy) have the potential to leave people with ongoing challenges with fatigue, memory, concentration, seizures, mobility and restrictions on driving, it is not surprising that levels of psychological distress are high.
Feeling distressed is certainly a normal part of adjusting to a diagnosis of brain tumour; however if you find that you are experiencing ongoing high levels of distress, anxiety and/or depression there is help available to assist you in managing this.
Reactions from others
Something that may differ between people with benign versus malignant brain tumour is the reaction from friends or family. It is not uncommon for loved ones to breathe a great sigh of relief when the results come back and the tumour is benign. There may be a tendency for people to think that once the diagnosis and treatment phase has finished that the problem has been solved and it is time to move on. Whilst this may be the case for some, for many people with benign brain tumour this time is only the beginning of making sense of a new reality. Comments from others such as “You’re just lucky it’s not malignant” can unintentionally leave somebody with a benign brain tumour feeling as though their experience is not valid.
Although the effects of benign brain tumour are largely not visible from the outside, it is important to acknowledge that the person may be struggling to adjust to a new way of living with significant ongoing symptoms. Similarly, friends and family may be very eager to look after their loved one in order to help them compensate for any difficulties that have arisen from the brain tumour. Whilst this help is valuable and appreciated, some report feeling overwhelmed or stifled by offers of support at every corner. The best way to provide the most valuable forms of support without invalidating or overwhelming somebody is to use clear and open communication. For the person with benign brain tumour, communicating your needs or wants to those around you can be a great way to manage these issues.
Explaining your brain tumour to friends, families and work colleagues
When asked to reflect on their journey, people living long term with benign brain tumour often express that they wish that they had been more proactive in maintaining their social networks early on. Everybody is different in terms what information they wish to disclose to others. Some people with benign brain tumour find that explaining their tumour and its ongoing effects to their friends, families and work colleagues helps to let them know how it is impacting on them (i.e. fatigue, physical limitations, emotional wellbeing). This helps to manage others’ expectations of you, ensures that any support you do receive is appropriate and allows you to remain connected with these networks in a meaningful way.
There are many ways in which you can communicate this information to those around you. For some people, they choose to phone key people in each family or social group to communicate news and updates; others will communicate news face to face with close family and friends and then share news on social media to save time and energy (e.g. a Facebook update); others will write a detailed email every few months with updates and send these around to their extended networks. You may like to delegate the role of “news bearer” to somebody else in the family who will then pass on news and updates to others via your preferred method. There is no “right” or “wrong” way to communicate this information.
Ensure that you take the time to decide who you wish to tell what information, and then plan the ways you would prefer to share this information with these people.
Strategies for coping with brain tumour
- As much as possible, try to keep some sense of normality through maintaining a routine of activities. You may need to come up with new ways to do things or new routines depending on your current situation.
- Be proactive in keeping up with your valued social groups (e.g. family, close friends, colleagues etc.) even if you are presently unable to continue with your previous group activities. There are always new ways to do things!
- Select the news that you wish to share with others and allow them to provide practical and emotional support (and explain what helps and what doesn’t).
- Develop practical strategies to manage ongoing effects (e.g. keeping a diary, having a good sleep routine, good diet and exercise).
- Practice relaxation and mindfulness exercises. Contact the Cancer Council Helpline for further information on guided activities.
- Seek emotional release through talking or writing and allow yourself to “cry it out”!
Strategies to support somebody with benign brain tumour
- Take the time to understand what the person is experiencing with their ongoing symptoms and emotional wellbeing.
- Try not to invalidate or downplay the seriousness of the diagnosis of benign brain tumour.
- Encourage open communication around what is helpful and what is not.
- Give the person space to discuss their challenges, fears and emotions if they wish.
- Support the person with brain tumour to maintain their sense of normality by continuing with regular activities. If physical, cognitive or logistic issues make this difficult; brainstorm a new way to do things (e.g. meet for coffee if the person is not up for tennis at the moment; assist with transport if they are unable to drive).
Getting support is integral to managing distress related to your brain tumour. The Cancer Counselling Service offers a free and confidential telephone and face-to-face counselling service to help people with brain tumour and those close to them. People can be referred to the service or find out about support and referrals to specific agencies by calling Cancer Council on 13 11 20
Staying connected after brain tumour research
Griffith University in collaboration with Cancer Council Queensland is researching the effects of brain tumour on social and psychological wellbeing, as well as the ways that people with brain tumour stay connected to others. Participation involves a 45 minute interview either over the telephone or in person (if you reside within 2 hours of Brisbane).
If you would like to know more about the Staying Connected after Brain Tumour research, or would like to take part, please contact Lee Cubis on firstname.lastname@example.org or 0438 208 783.
This is an article excerpt from the BTSS (Brain Tumour Support Service) Edition 1, 2016 E-Newsletter, which can be downloaded below: