Finishing treatment for a brain tumour: what happens next?

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Your recovery care plan

“When I am a patient, I am dependent. When I am a person, I am resourceful”.

When treatment has been completed, we sometimes find people feel lost and wonder what will happen next. The Neuro-oncology team wants you to feel informed and supported. This plan has been put together with that in mind. It can be used alongside copies of your clinic letters. You can use it how you like. We hope that you will find it helpful.

What happens next?

• First, you will have an MRI scan every month for 3 months. These will be arranged by your oncologist.
• After this, you will have a clinic appointment for the results at the Royal Sussex County Hospital. This is with your oncologist, a consultant neurosurgeon and a clinical nurse specialist (CNS).
• The scan appointment will be approximately a week before the clinic appointment. The details of the appointments will be sent to you.
• Clinic appointments will be either by telephone, video link, or face to face.
• If you have any concerns about scan or appointment dates or times, please contact our support worker.

Who is now in charge of my care?

You are still under the care of your oncologist and neurosurgeon for your brain tumour. However, your GP is now the key person for everything else. For example, prescribing your medication and any other health-related issues.

Your CNS will act as a link between the hospital and the community teams.

What if I feel unwell between my scans?

Keep the contacts of your CNS somewhere safe. They remain your key contact and will be happy to discuss any questions that you may have by telephone or email.

It is important to talk to your team if you have any worries or concerns.

Scans can always be rearranged if necessary.

When the tumour regrows what signs and symptoms should I look out for?

Due to the nature of the tumour, this can be unpredictable. You may find the symptoms you originally had come back. If you notice something different or have any new concerns, you should discuss this with your CNS.

What are the long-term side effects of my treatment?

Your oncologist will have discussed the long-term side effects of radiotherapy when they first met you. We recommend using your clinic letters as a reminder.

Radiotherapy to the brain can cause premature aging (the aging process is brought forward). This means you may notice the following:

• a worsening of your short-term memory
• increasing unsteadiness. You are more at risk of falling over or your mobility is not as good as it was.

What can I do to remain as healthy as possible?

Walking is an excellent form of exercise and you can adjust it to suit what you are able to do.

Always remember that however far you walk, you have to get back.

We suggest that you follow a general healthy diet, avoiding anything too extreme. Please ask for advice if you are unsure.

We would also encourage you to discuss restarting your regular sporting activities with the team.

The health and wellbeing service at the Macmillan Horizon Centre is also available to signpost you to other activities and advice.

Can I still be referred to a physiotherapist or speech therapist even though I am no longer having treatment?

Of course! You may even notice that you need more support than before.

Please contact your CNS who will refer you to the appropriate team in your local area.

When can I return to work and what should I do if I have employment issues?

Discuss this with your team. Returning to work is very much decided on an individual basis and what your job involves.

What if I have emotional concerns such as depression or anxiety?

There are many different ways of providing emotional and psychological support. These include counselling, reviewing your medication and support groups. If you have any concerns at all about your mental health, we encourage you to discuss this with your CNS and they can refer you to the appropriate support services.

What can I do if my family and friends are struggling?

Your family’s mental health is equally as important as yours. There are several services available for your family members and your CNS can look into what they feel is the most appropriate. This includes your children who we would encourage to be involved in your diagnosis and treatment.

Useful websites

The Brain Tumour Charity: www.thebraintumourcharity.org

Brainstrust: www.brainstrust.org.uk

Macmillan Cancer Support: www.macmillan.org.uk