My child’s brain tumour has come back

Hearing your child’s brain tumour has come back will be a huge shock for you and your family. It is important that you put in place a good support network. Words may not be making any sense right now, or you may just feel overwhelmed. Our support team is here to guide and support you.

What is a relapsed brain tumour?

A relapse or recurrence is when your child’s brain tumour comes back once they had finished first-line treatment. A brain tumour recurrence is typically in the same area of the first tumour. In some cases, the recurrence can be elsewhere in the brain. Some tumours may recur in the spine because they have a high tendency to travel through the cerebrospinal fluid (CSF) to the spine. 70% of paediatric brain tumours do not recur.

Treatment options

It is sometimes difficult to control tumours that have come back. However, there are treatment options available. Treatment for recurrent tumours is to slow down the growth of this tumour or manage the symptoms.

Your child’s multidisciplinary team (MDT) will create the best treatment plan, taking into consideration the previous treatment your child may have had. When a brain tumour recurs, the treatment plans are tailored on a case by case basis. What works for one child may not necessarily work for another. This all depends on your child’s tumour size, the rate at which it is growing, if it is in the spine, the treatment they have already had and your child’s overall health. All these factors will be taken into consideration before a treatment plan is proposed.

Surgery

Surgery may be offered to take as much of the tumour out as possible. However, this may not be possible if there is more than one brain tumour or if the tumour is growing quickly. Sometimes the tumour may come back near a critical structure in the brain, which may also result in surgery not being possible. You can read more about surgery here.

Radiotherapy

Radiotherapy can only be offered if:

• radiotherapy has not been used before
• the tumour has recurred in a new area of the brain and the treatment plan can be produced so that there is little to no overlap between the two treatment areas
• it has been more than a couple of years since the first tumour and the surrounding tissue has healed well.

In some cases, depending on tumour size and your child’s age and overall health, radiosurgery may be given to a tumour that has recurred in the primary site. You can read more about radiotherapy here.

Chemotherapy

If your child responded well to some chemotherapy drugs before, these may be used again, or a combination of different drugs may be used. You can read more about chemotherapy here.

Ask your child’s team if there are any clinical trials available for recurring brain tumours.

 Questions to ask your child’s doctor

• Where has the tumour come back?
• What are the treatment options?
• What is the purpose of this treatment?
• What are the chances of success?
• Are there any clinical trials for recurring tumours?
• What support is available for my child, my family and me?
• How do I tell my child?
• Who is my key contact?

Preparing yourself to share this news

There is no right or wrong way to feel when you hear your child’s tumour has come back. Your emotions are yours, and everyone has their own way of processing information. Whether this is feeling denial, anger, anxiety, guilt, sadness or overwhelm, these are all very normal emotions to be experiencing.

You may still be in shock with the news and not know how to share this news with loved ones or your child. Our difficult conversations guide is designed to help you get your thoughts together and clarify how you feel about what’s happening. This guide is here to help you feel more in control of your thoughts so that you can hold a better conversation. You can have a read of the guide online here or get in touch to order a hard copy.

If you have a close network of friends and extended family, and you wish for them to know, you may want to pick one spokesperson to share the news with everyone else. This will save you from having to repeat the same conversation.

You may also consider recording any conversations that take place during your child’s medical appointments. This will take pressure off you having to make notes or having to remember what was discussed and ensure you have a true account of the discussion. Before doing this you will need to ask the doctors permission to record the appointment. You can find more guidance around preparing for medical appointments in our Know How.

Telling children and siblings    

Children can often sense something is not right. This includes siblings too. You are the best judge to know when the time is right to share this news with children. Here are some tips that may help:

• Read our difficult conversations guide.
• Make sure you have processed the information and know what the news means.
• Talk to the healthcare team. They have years of experience in having these conversations with other families.
• Children may ask you why this has happened and many other questions. Know that it is okay to say you don’t know. It’s as much of a shock for them as it is for you. Be honest and open so that they can come to you for a chat.
• You may want to tailor the amount of information you share with children, depending on their age. You don’t want to overshare information with very young children, as this may cause anxiety.
• Encourage your children to share their feelings, and create a safe place to do this.
• Let teachers know so that they can watch out for any behaviour changes.

Resources that may help

• Difficult conversations
• Living with uncertainty
• How to deal with the overwhelm
• How to get a second opinion
• How to build a supportive team