Patient information

Cancer services

Find out what to expect from your appointment with our neuro-oncology service, which offers diagnosis and treatment for brain tumours and spinal tumours.

What are the key things I need to know?

You are being referred to our services as a recent head scan that you have had at your local hospital has shown some area(s) of abnormality. You will probably have had a CT head, and possibly a subsequent MRI head (this might not have been done yet). A CT Chest/Abdomen/Pelvis may also have been completed. These scans will help to understand if the abnormality is confined to the brain (more likely to be a primary brain tumour) or whether it has developed elsewhere in the body and now present in your brain (metastases). We appreciate this is a lot of information but the appointment with our team will be an opportunity for the consultant to explain the scans to you in more detail and also as a space for you and/or your family to ask any questions and concerns you may have.

Who will I be seeing in clinic?

If you have been newly diagnosed with a brain tumour of any sort we would normally aim to bring you to our Thursday morning multi-disciplinary clinic (as long as you are well enough to attend), although some patients are seen in our Monday or Friday morning clinics instead. We would encourage that you attend this appointment with your next of kin, family member or close friend. There will be a consultant(s) familiar with your case present at these clinics and you will also be introduced to one of our Clinical Nurse Specialists. These clinics will be busy but we want to ensure you see the most suitable member of the team and have enough time to discuss all of your concerns, therefore, you may have to wait for some time to see the most appropriate member of the team for your specific case. We appreciate that you and/or a family member may not always be able to make the commute to us and where appropriate we will offer you a video clinic appointment. The website for the video clinic is https://nhs.vc/Imperial-Neuro-Oncology

After your appointment/ Further resource

Following your scans and any other necessary investigations, your case will normally be discussed in the multidisciplinary team (MDT) meeting where neurosurgeons, neuro-radiologists, clinical oncologists, nurses, physio/occupational therapists and others come together to decide upon the best course of treatment for your needs and condition. We will contact you to discuss your treatment plan.

We offer a range of clinics on different days and times, including video calls and telephone clinics. Not every clinic is suitable for every patient, but please let us know if one clinic suits you better than another, and it may be possible to adjust your appointment.

Both Macmillan Cancer Support and Brain Tumour Charity websites are good sources of advice and support. Here at Charing Cross Hospital, Imperial College Healthcare NHS Trust, we have a dedicated Macmillan Cancer Support office on the ground floor of the hospital. There is also the Maggie’s cancer charity building (orange one) on the Charing Cross Hospital grounds which can offer you and/or your family support that fits your needs. They are open Monday to Friday 9am to 5pm and have a range of support specialists, psychologists and benefits advisors to help you find your way to live with cancer.

Website: www.maggies.org/our-centres/maggies-west-london
Telephone: 020 7386 1750
Email: london@maggies.org.

They have a timetable of events/ sessions which you can either just drop in on or pre-book and a mix of online and in person sessions. To see their timetable follow the link.

Furthermore, The Brain Tumour Charity have their own app, “BRIAN”, which you can download and use wherever you currently are and it can be used further down your pathway to track your own progress through treatment. You can also use this app to access discussion boards to get advice and support from other patient and healthcare professionals including the neuro-oncology team from Charing Cross hospital. Further information on Brain.

Physiotherapy

Physiotherapists help patients with issues that affect their breathing, movement and mobility. It is possible that the tumour can affect the areas of your nervous system which control these. To support optimum treatments for you Physiotherapists will often assessing a number of areas such as breathing, strength, sensation, coordination, balance and muscle stiffness to establish how best to help you manage your day to day tasks. Treatments often involve advice, exercise practice and advice on how to manage fatigue and conserve your energy.

Physiotherapists are also involved with respiratory care, helping to keep the chest clear of secretions and the lungs working properly for those who have developed difficulties with their breathing. Physiotherapists will often involve family, friends and carers in supporting management of recommended exercises and strategies.

Occupational therapy

Occupational therapists will work with you to assess and optimise your independence in activities of daily living. These activities may include eating, washing and dressing, preparing a meal, shopping, using your phone or working.

Assessment is focused on your cognitive, physical, sensory and perceptual abilities that may impact your function in day to day activities.

Occupational therapy is individualised and may include education, task practice and/or modification, teaching compensatory strategies, provision of aids or equipment. Intervention may also include carer training and providing advice to family or friends to optimise your independence.

Dietitian

Dietitians work closely with the multi-disciplinary team. They can assess, diagnose and treat dietary and nutrition problems. Dietitians will advise you on a variety of food and health concerns, for example: unintentional weight loss.

You may be referred to see a dietitian for your nutrition needs. As an in-patient, referrals may be based on a nutrition screening process. The focus tends to be based on unintentional weight loss. Following a diagnosis from neuro-oncology, there may be other concerns, like swallow problems, or other issues. You may need to put on weight following a time of ill-health or as a result of a medical condition. You may suffer from additional long term conditions, like coeliac or diabetes. You, or your carers may want practical advice to ensure you are getting appropriate nutrition in their diet, which the dietitian can support you with.

If you have any concerns, your nurse, therapist or the doctor’s team may want you to see the dietitian. Equally, if there are any nutrition concerns, an individual is always welcome to self-refer to dietetic services. In the community setting, your GP can refer you to a dietitian nearer to home.

Speech and language therapy

Speech and language therapists (SLTs) are responsible for assessing and providing individualised therapy for speech, language, communication and/or swallowing difficulties. The extent of which communication or swallowing may be affected will depend on the location of the tumour within the brain. Information might be presented in an alternative means, in order to support you to understand your diagnosis, treatment and prognosis.

The SLT works closely with the multidisciplinary team, patients, families, and carers to provide advice and education, on how to support communication effectively. This may also include supporting you to make decisions regarding your diagnosis and treatment.

If you are having difficulties with swallowing (dysphagia), the SLT will assess and monitor your swallowing, providing recommendations on alternative textures, strategies that may improve the safety of the swallow, in addition to any appropriate rehabilitation exercises.

Ongoing support

If you require surgery, you may need on-going support after your surgery or because of the impact of the tumour. This can occur in several different ways depending on your needs and what is provided in your local area:

As an inpatient at a local or specialised rehabilitation unit
On one of the wards at your local hospital
In your own home with a community team
As an outpatient at your local hospital or at NHNN

All referrals will be discussed with you and/or your family before they are made.