Adjusting to a ‘new normal’ following a brain tumour diagnosis can be challenging and you may have many questions once you’ve come home from surgery or other treatments. To try to answer some of these questions, we held a virtual Q&A in our online app, BRIAN, with medical experts specialising in brain tumours from Imperial College London.
Dr Matt Williams, Consultant Clinical Oncologist, was joined by neuro-oncology specialist nurse, Shivani, specialist occupational therapist, Christelle, and specialist physiotherapist, Graeme. You can find more information about how occupational therapists and physiotherapists can support you with rehabilitation on our website.
Is it standard procedure to monitor brain tumour patients for side-effects after treatment? If so, is there a time limit after the treatment?
Matt: Yes. In the short term, we ask patients about their side-effects as they go through treatment. After treatment has finished, we will ask about ongoing functional issues (walking, memory, etc.). We also do regular scans. In addition, we need to keep an eye on pituitary function (with a blood test) and in some patients, we do detailed cognitive assessments.
Is a neurological rehabilitation assessment part of the brain tumour treatment plan and in what circumstances and when? Who is it performed by?
Matt: It should be. We know it isn't everywhere. I think at Charing Cross, all our brain tumour patients get an assessment after their operation. It is worth saying that NICE mandate a rehab-focused MDT (multi-disciplinary team) for all brain tumour patients. It isn't needed for all, but it should be accessible.
Christelle: In acute services patients would be seen by therapies depending on their needs. And this could be either occupational therapy or physiotherapy – however, often they get input from both disciplines.
We only had one visit from an occupational therapist (OT) and could’ve done with more sessions. How could we have gone about getting this?
Christelle: The best way to access community therapy again if you feel you have ongoing occupational therapy needs is to liaise with your GP and ask them to refer you to community OT.
Matt: Alternatively, if you have been referred to community palliative care, then they often have OT and physio attached as well, and can be more responsive.
I had one combined visit from an occupational therapist and physio. I’m not sure whether more would be appropriate, as not sure what they can offer. Do you have any advice?
Graeme: It is not uncommon for physios and OTs to work together to assess patients as this enables them to look at everything together and helps when making plans about your care / input. Usually, therapists ask you what the problems you are having are and ask you what your ‘goals’ are.
These goals are often important for directing therapy input. If there are things you cannot do and wish to do, then these would be goals for you to work towards. Sometimes therapists leave you exercises and a plan to allow you to work towards those goals if they think you can get there independently. If you are not making the progress you want or expect, or you still have goals you wish to achieve, then further input could be indicated and you can ask your GP to refer you.
Who should you ask - you've said in a couple of answers that you need to ask but is there someone specific/a named role to contact?
Matt: For community rehab (physio coming to your home) then you need to ask your GP to refer you to community rehab teams.
A hospital-based CNS can refer you to community palliative care (which might help you access an OT and physio quicker). Your CNS might be best placed to guide you as to the best route.
Additional services and access to equipment
What services are available in the community for rehabilitation?
Graeme: Services available can vary, but each borough has its own community therapy team. Usually there are specialist neuro therapy teams who specialise in the treatment of patients with brain tumours. The best way to access these services locally is through your GP, who can refer you to these services as well as any available uniquely in your area. It is really helpful when you ask for therapy to think about what your goals are from their input. You should also be aware there is a lot you can do without seeing a therapist for a 1:1 session.
If you wanted to carry on doing regular activity and exercise, then in addition to local community teams there are lots of resources you can access online. For seated and standing exercises you can try an app called ‘reps’. It is free and has video links to follow. If you prefer a more interactive experience, you can go to legs.org.uk who offer a range of online classes for patients with neurological conditions. For people who would like to access yoga services, search for the Adaptive Yoga Network to help support patients with neuro conditions.
Christelle: A few useful apps that you could look into for cognitive exercise: CanPlan, Lumosity, Matrix game 3. A few upper limb exercise apps to look into: Flow Free, Dexteria.
What are the best ways to access equipment, such as wheelchairs?
Christelle: There are various ways to access equipment in the community and this is dependent on your need. The services available are often dependent on the area you live in. If you are looking for access to basic wheelchairs, the British Red Cross is often a good starting point or Wheel Freedom where you could rent or purchase a wheelchair. For more complex equipment needs this will likely need to be assessed and provided by a therapist in the community and a referral by your GP to community therapy would need to be made.
I’ve been diagnosed with grade 3 astrocytoma. Do you have any advice in regards to diet and lifestyle? I’m currently having radiotherapy and then 12 months of chemo next year.
Shivani: In regards to diet and lifestyle, we would always advise a balanced healthy diet and regular exercise (as tolerated). From our experience the better you are in terms of fitness etc. then the better we generally find people tolerate the treatments.
I’ve been put on a waiting list for speech and language therapy, but would like to receive this sooner. Do you have any advice?
Shivani: If your issues relating to speech and language therapy are acute and need addressing sooner rather than later then discussing this with your specialist nurse would be helpful as they could signpost you as appropriate or try and get you seen in an outpatient setting.
Your specialist nurse will work with their oncology team. They are usually your point of contact if you have questions or concerns about treatment, side-effects etc. related to your brain tumour diagnosis. You are usually given a contact details for them if needed.
Matt: If you have been waiting a while, I would go back to your CNS and ask for help accessing other services. There may be other routes ’in’ which might be quicker - but it is all very geography-dependent.
I had tumour removal in May, and radio and chemotherapy for six weeks. I have developed some deafness in my right ear (side of tumour) during radio. Will this improve?
Matt: It is possible to get some deafness after radiotherapy, as a sort of radiotherapy-induced glue ear. This normally resolves after a few months as the side-effects settle down.
My husband had surgery about 15 months ago. From the latest MRI carried out three weeks ago they mentioned he has hydrocephalus. This has impacted his walking and short-term memory. Is surgery the only way out of this?
Matt: If he has hydrocephalus, it is likely that surgery is the only real way to reverse it. Occasionally steroids can help, if there is an obstruction, but that is quite rare.
Does having hydrocephalus affect short-term memory?
Matt: Yes, it often does.
If your tumour has an IDH mutation what does that mean?
Matt: IDH is an enzyme involved in cell metabolism. Mutations are more common in grade 2 and 3 gliomas, and are associated with a better prognosis. In combination with 1p/19q and (sometimes) MGMT methylation, they help us group the tumours into the right category. There is a (rather too detailed) article here: https://www.uofmhealth.org/health-library/ncicdr0000062900
The Brain Tumour Charity support team: We also have some information about biomarkers which includes information about IDH mutation.
Are the effects of Temodar (temozolomide) cumulative and increase with each round or are they likely to be similar each round?
Matt: After cycle 2, they tend to be stable. Blood counts can gradually be affected and take longer to recover though.
If you have any questions about coming home after surgery or brain tumour treatments and care, you can get in touch with our Information and Support line by emailing firstname.lastname@example.org, calling 0808 800 0004 or through live chat by clicking the red button in the bottom corner of your screen.