Treatment decisions

High-risk neuroblastoma is treated with particularly intense multimodal therapy, including surgery, chemotherapy, radiotherapy and immunotherapy. Clinical research into how to improve these treatments so that they are more effective and less harmful is ongoing worldwide. 

Treating high-risk neuroblastoma successfully is particularly challenging. No diagnosis is the same, and different children will respond differently to the multimodal therapies. High-risk neuroblastoma also has a particularly high rate of coming back after treatment (relapse). In the case that a child’s neuroblastoma returns, or does not respond well to standard treatments, the options available for treatment on the NHS become more limited. These factors mean that some families, working with their consultants, may explore further treatment options available both in the UK and overseas. This could be in the hope of keeping the cancer away, or in the hope of getting back into remission. 

How we can help 

Our Family Support team are on hand to offer impartial knowledge and guidance around accessing treatment outside of the standard options for high-risk neuroblastoma. As parents affected by neuroblastoma themselves, they are fully understanding of the difficulty and stress associated with the decision-making this involves. Our in-depth knowledge of the global clinical trial landscape means we can help families to understand and interpret the information relevant to them and their child.

There is a distinct ‘standard pathway’ for the initial treatment of high-risk neuroblastoma that includes surgery, chemotherapy, radiotherapy and immunotherapy. The exact order and length of these treatments will vary as neuroblastoma is a very variable disease, but this is the general template for what is known as ‘frontline treatment’. 

Sometimes, a child may not respond to this frontline treatment as hoped, or they may have a relapse of their cancer, where it comes back after treatment has finished. In these circumstances, they may choose, in consultation with their NHS consultant, to access additional treatment which may be in the form of a clinical trial in the UK or overseas. 

It is important to remember that such treatments have not yet been proven to work on children with neuroblastoma, and this is why they are being explored through clinical trials.

Accessing additional treatment in the UK 

There are a number of clinical trials for neuroblastoma available in the UK. Being able to access one of these trials is dependant on various factors concerning your child's disease, such as stage, risk group and response to standard treatment.

Our Family Support team can facilitate access to the best available clinical trials in the UK, through our relationships with clinical research and healthcare teams across the country. We may also be able to provide practical support with accommodation and travel where this is required. The team are also acutely aware of the impact of decision-making around accessing additional treatment through trials, and aim to do all they can to empower parents in this process.

Accessing additional treatment overseas 

Some families may decide to access additional therapies for their child through clinical trials that are not available in the UK. Our Family Support team holds strong relationships with the global research community, which gives us an in-depth knowledge of international trials, and good communication with the hospitals and clinicians that deliver them. We first of all encourage families to speak to their UK consultant in order to help with decision making.

Accessing additional treatment overseas can often cost hundreds of thousands of pounds and may require significant fundraising. We know raising funds is a huge burden on families already going through the toughest time with their child’s cancer diagnosis and treatment. We are here to support families if they are faced with this burden and can help facilitate fundraising campaigns that are for recognised and approved clinical trials or treatments.

We can provide support with a fundraising campaign by:

• Setting up and managing the online fundraising platform
• Providing a set of promotional resources to support fundraising
• Providing fundraising guidance to families and fundraisers
• Providing media and communication support
• Claiming Gift Aid on eligible donations
• Setting suitable fundraising targets (at the right time) that include the cost of treatment and the other associated costs of accessing treatment for families

We can also support families by:

• Connecting them with the relevant hospital and supporting the process to register
• Connecting families to other families who have previously accessed, or are accessing the same treatment
• Providing practical information relevant to the treatment  
• Negotiating the best possible treatment price with the institution
• Arranging flights and accommodation
• Providing grants to cover day-to-day costs while overseas
• Helping with access to the scans needed throughout treatment

If you are considering accessing additional treatment overseas and would like support, you can contact our Family Support team using the form below, or by calling 020 7284 0800 or emailing support@solvingkidscancer.org.uk.

Decision making 

The Redmapp Website is a new tool designed to support families facing the difficult decisions that come when their child is faced with uncertainty associated with more complex cases of neuroblastoma.  

In the UK, there is an extensive standard frontline treatment plan for high-risk neuroblastoma, involving multiple types of therapy. Because of the complexity of neuroblastoma, there can often be deviations from this plan depending on various factors such as where the disease is located or how it responds to different interventions. In addition, in around half of cases of high-risk neuroblastoma, the disease will not respond to the standard treatment pathway (known as refractory) or may return later (known as relapse).  In these circumstances, parents are often faced with many treatment and care options that lead to difficult and distressing decision-making processes.

The website contains a wealth of information for parents dealing with a complex treatment pathway for their child with relapsed or refractory neuroblastoma. As well as signposting credible health information, you can find first-hand accounts from parents about their decision-making experiences and how it impacted them. There is also a range of support tools on the webpage including advice on allied health professionals, connecting with other parents, and perspectives from clinical psychologists. 

In our Family support blog, our Family Support Coordinator Hayley talks about the burden of decision-making, through her personal and moving experience as Mum to Eva, who was diagnosed with neuroblastoma just before her second birthday.

Solving Kids’ Cancer UK does not recommend or advocate for access to any particular treatment or assist in the decision-making process. We provide impartial information about specific treatments and support to families to access evidence-based treatment.  We always encourage families to discuss all treatment with their child’s oncologist in the UK.