Proton beam therapy is an advanced type of radiotherapy used to treat cancer, including some brain tumours. If you are due to start treatment, you will naturally have questions about how it will affect you day to day, and how soon you will recover.
Recovery after proton beam therapy for a brain tumour is different for everyone. It depends on your general health, the type and location of the tumour, the radiation dose, and any other treatments you have had, such as surgery or chemotherapy.
Unlike traditional radiation therapy, proton therapy delivers a precise radiation dose to the tumour with a minimal exit dose. This helps protect the surrounding healthy tissue and can minimise side effects. Even so, some side effects can still occur, and recovery takes weeks or months.
This guide explains what recovery may involve, the side effects to be aware of, when to seek medical advice and the support available to you and your family.
What is a proton beam therapy session like?
Proton beam therapy is typically given every day for around three to eight weeks. The sessions are around 30 to 60 minutes and delivery is painless.
For brain tumours, a custom-designed mask is usually required to ensure you are placed in the correct position on the treatment table each time. Most patients can return home straight after each session.
How long does recovery after proton beam therapy take for brain cancer patients?
There is no fixed timeline for recovery. For most people, it happens gradually over weeks and months rather than days.
Side effects usually start to develop during the second or third week of treatment and may continue to build for a week or two after treatment finishes. These short-term side effects then usually settle over the following weeks.
Tiredness (fatigue) is often the side effect that lasts longest. For many people, energy levels improve over a few months, although for some it can take up to a year to feel fully back to normal.
A small number of side effects can appear months or years after treatment. These are known as late effects, and your care team will monitor for them at your follow-up appointments
Common side effects cancer patients should watch for
Proton beam therapy works by precisely targeting cancer cells, using pencil beam scanning. This limits radiation exposure to surrounding healthy cells, which is helpful for certain cancers close to sensitive structures such as the brain and spinal cord. This precision helps limit the side effects for some patients.
However, as with any other radiation treatment, side effects can occur, including:
- Tiredness (fatigue)
- Hair loss and skin changes on the scalp
- Changes in memory, concentration or mood
- Swelling around the treatment area, sometimes managed with steroids
- Vision changes, if the tumour was near the optic nerves
- Seizures, in patients with a prior history or tumours near seizure-prone regions
Not everyone experiences these, and many effects are temporary. Your care team will schedule follow-up scans and neurological checks to track how the brain is healing, and can help you manage any side effects you do have.
Tiredness (fatigue)
Fatigue is one of the most common side effects of radiotherapy treatment to the brain. It often builds during treatment and can continue for several weeks or months afterwards. It is different from everyday tiredness and may not improve fully with rest.
Some people also experience a period of increased sleepiness and low energy a few weeks to a few months after treatment has finished. This is sometimes called somnolence syndrome. It usually improves on its own, but let your care team know if it happens.
Pacing your activities, resting when you need to and gentle exercise, such as short walks, can help.
Hair loss and skin changes
You may lose hair in the areas where the proton beams pass through the scalp. Hair usually starts to grow back a few months after treatment, although it may be thinner or a slightly different texture. Depending on the dose received, hair loss in some areas may be permanent. Your care team can tell you what to expect.
The skin in the treated area may become red, dry, itchy or darker. This usually settles within a few weeks of treatment finishing.
Changes in memory, concentration or mood
Proton beam therapy can limit the radiation dose to healthy brain tissue, but areas close to the tumour may still receive some dose. Some people notice changes in memory, concentration or mood during and after treatment. You may find it harder to focus, remember things or find the right words, or you may feel low, anxious or irritable.
These changes can be linked to the treatment, the tumour itself, fatigue, steroid medication or the emotional impact of a diagnosis. They are often temporary and improve over time. If they continue or affect your daily life, your care team can refer you for specialist support, such as a neuropsychologist or occupational therapist.
Swelling around the treatment area
Radiotherapy can cause swelling (oedema) in the brain around the area being treated. This can increase pressure inside the skull and may cause headaches, nausea, drowsiness or a temporary worsening of symptoms you had before treatment.
Swelling is often managed with steroids, which reduce inflammation. If you are prescribed steroids, take them exactly as directed. Do not stop taking them or change the dose without speaking to your care team, as the dose usually needs to be reduced gradually.
Vision changes
If your tumour was close to the eyes, the optic nerves or the parts of the brain involved in sight, your vision may be affected. Possible changes include blurred vision, dry or watery eyes and, over a longer period, cataracts (clouding of the lens of the eye), which can be treated.
Rarely, radiation can affect the optic nerves and cause permanent changes to vision. Your treatment team plans your treatment to limit the dose to these structures as far as possible, and your consultant will talk you through your individual risk before treatment starts. Tell your care team promptly about any changes in your vision.
Seizures
Seizures (fits) are more likely in people who have had them before, or whose tumour is in an area of the brain that is more prone to seizures. Swelling caused by treatment can sometimes trigger them, and occasionally they can develop later.
If you already take anti-seizure medicine, keep taking it as prescribed. If you have a seizure for the first time, or your seizures change or become more frequent, contact your care team or seek urgent medical help.
When to contact your care team
Your care team will give you contact details to use during and after treatment, including out of hours.
Contact them if you or the person you are caring for:
- has headaches that are getting worse, or is being sick
- is more drowsy or confused than usual
- has new or worsening weakness, numbness, or problems with speech or balance
- notices changes in vision
- has a high temperature or feels generally unwell, particularly while taking steroids
- has any other symptom that is new or worrying
Call 999 or go to A&E if someone has a seizure for the first time, has a seizure that lasts longer than five minutes, or suddenly becomes very drowsy or difficult to wake.
The different stages of brain tumour recovery
Recovery tends to happen in stages. Many people have also had surgery or chemotherapy before or alongside proton beam therapy, and this will shape their recovery too.
- During treatment: proton beam therapy is usually given as an outpatient treatment, Monday to Friday over several weeks. Side effects tend to build gradually from the second or third week.
- The first few weeks after treatment: side effects often peak at 1 – 2 weeks after completing treatment and then begin to settle.
- The following months: energy gradually returns, although fatigue and sleepiness can continue for some time.
- Longer term: regular follow-up, monitoring for late effects and adjusting to life after treatment.
What recovery looks like in the first few weeks
In the first couple of weeks after treatment finishes, side effects may continue to build before they begin to improve. This is normal, and knowing to expect it can help.
During this time:
- Fatigue is often the most noticeable side effect. Plan rest into your day and build up activity gradually, such as short walks and light daily tasks.
- If you are taking steroids, your team will usually reduce the dose gradually.
- The skin on your scalp may still be sore or dry, and hair loss may continue for a short time before regrowth begins.
- You will usually have a review appointment with your care team a few weeks after treatment to check how you are recovering.
If you have difficulties with movement, speech or thinking, a physiotherapist, occupational therapist or speech and language therapist can help you regain skills and confidence.
What should I avoid during recovery?
Your care team will give you advice specific to your treatment. In general, it helps to avoid:
- Stopping or changing medicines such as steroids or anti-seizure medicines without speaking to your care team.
- Harsh products and heat on your scalp, such as perfumed shampoos, hair dye, hot hair dryers and straighteners, until the skin has healed. A mild, unperfumed shampoo is usually recommended, and you can check with your care team before using any other products.
- Sun on your scalp. The treated skin may be more sensitive to the sun for some time, so cover your head with a hat or scarf outdoors.
- Swimming pools until your skin has healed, as chlorine can irritate it.
- Driving until you have been told it is safe. If you hold a UK driving licence, you are legally required to tell the DVLA (Driver and Vehicle Licensing Agency) about a brain tumour diagnosis, and you may need to stop driving for a period of time.
- Doing too much too soon. Try to balance activity with rest and build up gradually.
- Alcohol and supplements without advice. Alcohol can add to tiredness and may interact with some medicines, and some supplements and herbal remedies can interact with treatment, so check with your care team first.
There is no special diet needed after proton beam therapy to the brain. Eating a balanced diet and drinking plenty of fluids can support your recovery. If your appetite is affected or you feel sick, your care team can refer you to a dietitian.
Long-term follow-up after cancer treatment
After treatment, you will have regular follow-up appointments with your consultant and care team. These usually include MRI scans to check how the tumour has responded and to look for any changes. Appointments tend to be more frequent in the first few years and less frequent over time. Your consultant will explain your follow-up schedule.
Follow-up is also an opportunity to check for late effects, which can develop months or years after treatment.
Depending on where the tumour was and the dose received, these may include:
- Changes in hormone levels, if the pituitary gland or hypothalamus was close to the treatment area. You may have regular blood tests to check this, and hormone replacement can be given if needed.
- Changes in memory, thinking or concentration.
- Hearing changes, if the inner ear was close to the treatment area.
- Cataracts, if the lens of the eye received some radiation.
- Radiation necrosis, a rare effect where a small area of brain tissue in the treated area is damaged. It can cause symptoms similar to those of the tumour and may need treatment with steroids or other medicines.
Not everyone will experience late effects, and many can be managed if they do occur.
Recovery is not only physical. Adjusting to life after treatment can take time for you and those close to you. Counselling, support groups, brain tumour charities and a gradual return to work and your usual activities can all help.
Questions worth asking your care team during recovery
Asking questions can help you feel informed and involved in your recovery. You may find it helpful to write them down before your appointments and to bring someone with you.
- How long might it take for my energy levels to recover?
- Are the symptoms I have now expected at this stage, or should we look into them?
- How and when will my steroid dose be reduced?
- When can I return to work, exercise and my usual activities?
- When might I be able to drive again?
- What late effects should I look out for in the months and years ahead?
- How should I care for the skin on my scalp now that treatment has finished?
- Who should I contact if I have new or worsening symptoms, including out of hours?
- What is my follow-up schedule, and how often will I have scans or blood tests?
- How will my care be coordinated between my consultant and my GP?
- What support is available for me and my family?
Speak to the team about your treatment with Proton International London
Proton International London is the UK’s only private proton beam therapy centre, located within the private patient unit at University College Hospital London. Our team of consultant oncologists, radiation oncologists, radiographers, physicists and nurses supports patients through treatment and recovery, with a dedicated point of contact throughout.
If you would like to find out more about proton beam therapy for brain tumours, what recovery may involve, or whether treatment may be suitable for you, get in touch with our team. You can also request a consultation or a second opinion.
