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Life after the diagnosis of a brain tumour

<p><span style="font-family: helvetica;">Just like we all respond differently to different infections, our bodies respond differently to brain tumours and the effects of their treatment. Some people, especially those on surveillance only, are able to resume work, driving, school and undertake their family or social engagements. </span></p><p><span style="font-family: helvetica;">In other cases, life will need to be renegotiated with a period of rehabilitation and reassessment for what activities you can feasibly resume. For this reason, I always recommend you attend clinic with a close friend or family member who can help support you through the journey. It is possible to request a special meeting between your treating team and family members. This is called a case conference and is often an important open way to address each persons&#39; concerns. </span></p><p><span style="font-family: helvetica;">For children, school may need to be put on hold, or a more flexible arrangement to continue learning will need to be discussed with the school. Very young children and babies have a good chance of recovering a lot of function depending on the type of tumour and treatment given. They may require months of dedicated rehabilitation which is often provided on an outpatient basis. Most doctors want to understand your life; so that together, you identify the life activities you need to renegotiate and come up with a plan to accommodate these as much as possible.</span></p><p><strong style="font-family: helvetica;">How long have I got?</strong></p><p><span style="font-family: helvetica;">One of the most common questions I get from patients after a diagnosis of a brain tumour is, “How long have I got?&quot; There is no formula to calculate this and many factors are at play in determining this. Most benign tumours (non-cancerous) have no effect on your lifelong prognosis but surveillance is required to ensure that the tumour biology does not change. </span></p><p><span style="font-family: helvetica;">For more aggressive tumours, its location, extent of surgical resection, your general fitness, extent of disease and response to treatments play a role. It is therefore useful to remain engaged with your medical team who will help you navigate various stages of your treatment.</span></p><p><strong style="font-family: helvetica;">Can I be treated in Kenya?</strong></p><p><span style="font-family: helvetica;">With a growing number of neurosurgeons, oncologists and appropriately equipped centres many patients can be managed here in Kenya. Whilst treatment is guided by international guidelines, it will be tailored to your specific needs.</span></p><p><span style="font-family: helvetica;">Where you may benefit from a review in a different treatment centre locally or abroad, your treating team should be in a position to advice. The good news is that most treatment options are available in Kenya and particularly at the Aga Khan University Hospital, Nairobi where I practice.</span></p><p><span style="font-family: helvetica;"><strong>What about your emotional wellbeing?</strong>
</span></p><p><span style="font-family: helvetica;">The diagnosis of brain tumour is a major life event which in most cases affects your emotional wellbeing. Being aware of this however helps you build a coping mechanism and a support system.
</span></p><p><span style="font-family: helvetica;">Sometimes the associated stress is due to the part of the brain affected by the tumour or a side effect of the treatment provided. Some common side effects include:</span></p><ul><li><span style="font-family: helvetica;">Irritability,</span></li><li><span style="font-family: helvetica;">Poor appetite </span></li><li><span style="font-family: helvetica;">Poor sleep patterns,
</span></li><li><span style="font-family: helvetica;">Feeling emotionally low, getting tearful and lacking the energy even to get out of bed.</span></li></ul><p><span style="font-family: helvetica;">Many of these feelings improve with an effective support system. Seeing a professional counsellor, talking to friends and family and engaging within the community can be of great comfort. A normal balanced diet and simple exercises like short walks are important during the recovery journey.</span></p><p><span style="font-family: helvetica;">While it is important to respect the patient&#39;s and family&#39;s wishes for privacy, it helps to invite them to social or religious activities to make them feel included in the community. If you are supporting a patient and they cancel at short notice, this should be understood, as sometimes one feels like they are riding a roller coaster and need time to themselves. </span></p><p><span style="font-family: helvetica;">Fertility and brain tumours</span></p><p><span style="font-family: helvetica;">With the exception of pituitary tumours (which produces various fertility hormones), surgery on other parts of the brain does not have an effect on your fertility. Trying for a baby (both men and women) during chemotherapy should be discussed with your treating team as they may have an effect on your fertility or baby. Before commencing chemotherapy or radiotherapy, those who would like to start or grow their family should discuss the same with their team who may send them to a fertility specialist for counseling and support. </span></p><p><strong style="font-family: helvetica;">Will my children get it?</strong></p><p><span style="font-family: helvetica;">Some genetic abnormalities predispose us to tumours that can run in families. Fortunately, these are rare cases globally. Most tumours are sporadic events without an effect on your children. That said, we know that increasingly relatively “quiet&quot; gene mutations can be affected by environmental factors and result in tumour formation. The science of this genetic expression is called epigenetics and is thought to explain why some but not everyone who smokes, drinks in excess or is exposed to other cancer causing substances ends up getting a tumour. </span></p><p><span style="font-family: helvetica;">As epigenetics takes years to express itself, any positive lifestyle changes is money in the bank. Indeed, those who lead healthy lifestyles have greater fitness for treatment and are better able to tolerate the treatment when they get sick; so eat healthy, exercise and maintain a healthy circle of social support (yes social wellness is a factor in overall health).</span></p><p><span style="font-family: helvetica;"><strong><em>By Dr Beverly Cheserem, Consultant Neurosurgeon, Aga Khan University Hospital, Nairobi</em></strong>

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