CION Ameerpet
Neuroblastoma — Parent Guide to High-Risk Treatment
High-risk neuroblastoma treatment in children — coordinated, phase-by-phase care
Medically reviewed by the CION Paediatric Oncology Team · Last reviewed June 2026
Your child has been told their neuroblastoma is high risk. That means the treatment journey is long, intensive, and involves several different specialists working in sequence. This page explains what each phase of treatment does and how the CION team coordinates that care — so you can ask the right questions at every step.
- Multimodal neuroblastoma protocol — induction, surgery, stem cell rescue, radiation, and immunotherapy explained in plain language
- Tumour board for every child — paediatric oncologist, surgeon, radiation oncologist, and haematologist all review your child's case together
- 45-minute consultations — no rushed answers, every question welcomed, written plan provided at each phase
- Transparent roadmap — you will know the full treatment sequence before it begins, with clear explanations at each transition
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Understanding the diagnosis
What is high-risk neuroblastoma — and what makes it different from other childhood cancers?
Neuroblastoma is a cancer that starts in immature nerve cells. It most often begins in the adrenal glands — two small glands that sit on top of the kidneys — but it can also originate in nerve tissue running along the spine, in the chest, abdomen, or neck. The "high-risk" label does not mean untreatable. It means the treatment plan needs to be much more intensive and carefully coordinated.
When a child is diagnosed with neuroblastoma, the oncology team assigns a risk group — low, intermediate, or high. That group is determined by three main factors working together. The first is age at diagnosis: neuroblastoma in very young infants often behaves quite differently from the same disease in an older child. The second is stage — how far the tumour has spread beyond its starting point. The third is tumour biology: specific features of the cancer cells, including whether a gene called MYCN is amplified (present in many extra copies). When these factors combine in a way that suggests the tumour is aggressive and widespread, the disease is classified as high risk.
What makes high-risk neuroblastoma particularly challenging is that it has often spread to the bone marrow, bone, liver, or skin by the time it is found. The cancer is also more likely to respond initially and then return — called relapse. This is why the treatment protocol for high-risk neuroblastoma is not one type of treatment, but a deliberate, sequenced combination of several — each with its own role in controlling the disease at a different point in time.
If you are reading this because your child has just been given this diagnosis, take a breath. You deserve a care team that will explain every decision before they make it, who will treat your child as a whole person, and who will walk this journey with you. That is what we are here for.
Neuroblastoma multimodal therapy
The four treatment phases — what each one does for your child
High-risk neuroblastoma treatment follows an internationally established protocol. Each phase has a clear goal and builds on the phase before it. Understanding the sequence helps you plan, ask better questions, and feel less surprised at each transition.
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Phase 1 · Months 1–5
Induction — shrinking the tumour and preparing for surgery
Induction is the opening phase of treatment and the most intensive from a chemotherapy standpoint. Its goal is to reduce the primary tumour, destroy as many neuroblastoma cells as possible throughout the body, and — crucially — collect your child's healthy stem cells from the blood for storage. These stem cells will be used later. Induction typically involves several cycles given over a number of months. Your child will spend significant time in the oncology day unit or as an inpatient, and blood counts will be monitored very closely. Infections are a real risk during this phase; the team will teach you exactly which signs require an immediate call or emergency visit. At the end of induction, scans — including a MIBG scan — are used to assess how well the tumour has responded before moving forward.
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Phase 2 · Surgery
Surgery — removing as much tumour as possible
After induction has shrunk the tumour, a paediatric surgical oncologist will remove it. The goal of surgery is to take out as much of the primary tumour as safely possible — this is sometimes called achieving a maximal resection. Complete removal is the ideal, but it is not always achievable without unacceptable risk to surrounding tissue and nerves. The surgical team and oncologist will discuss exactly what is realistic for your child's tumour position before the operation. Neuroblastoma often starts near the spine and major blood vessels, which is why paediatric surgical experience with this specific cancer matters. Surgery is performed under general anaesthesia. Recovery time varies depending on the location and size of the tumour, and the team will prepare you for what to expect.
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Phase 3 · Consolidation
High-dose chemotherapy with stem cell rescue — eradicating residual disease
This is the most intensive single phase of treatment. High-dose chemotherapy is given at doses far above what the bone marrow can survive on its own. This is where the stem cells collected during induction become essential: after the high-dose treatment is complete, your child's own stored stem cells are infused back intravenously. Over the following weeks, these cells travel to the bone marrow and restore its ability to produce normal blood cells — a process called engraftment. Your child will be in hospital throughout this period and will need close monitoring for infection, organ stress, and the effects of very low blood counts. Because your child's own cells are used (not a donor's), there is no risk of rejection in the way a kidney or heart transplant carries. The care team will guide you and your child through each day of this phase with written updates on what is happening and why.
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Phase 4 · Maintenance
Radiation, immunotherapy, and maintenance — reducing the risk of relapse
Once your child has recovered from the stem cell rescue, the focus shifts to eliminating any remaining neuroblastoma cells and keeping the disease from returning. Radiation therapy is directed at the site of the original primary tumour — and sometimes to areas where disease was present in the bones — to destroy any cells that surgery could not reach. Following radiation, neuroblastoma immunotherapy begins: a treatment that primes your child's own immune system to recognise and attack any surviving neuroblastoma cells. Alongside immunotherapy, a medicine is given that encourages any remaining neuroblastoma cells to mature and stop dividing — a process called differentiation therapy. This maintenance phase typically runs for several months and is given in scheduled clinic visits. Many families find this phase more manageable because the peak intensity is behind them, though the treatment continues to demand careful attention and regular monitoring.
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MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
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MBBS (AIIMS), MS (Surgery) (AIIMS), DNB (Surgical Oncology), MRCS (Edinburgh)
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Dr. Vinay Mamidala
MBBS, MS(General Surgery), M.Ch(Surgical Oncology), FMAS, FARIS(Ongoing)
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High-risk neuroblastoma needs a coordinated team — not a single specialist
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Coordinated neuroblastoma care
How the CION team coordinates your child's high-risk neuroblastoma care
High-risk neuroblastoma treatment involves several specialties working in a defined sequence. Here is how the key components of care fit together at CION — and what each one means for your child day to day.
Tumour Board Review
Every child with high-risk neuroblastoma at CION is reviewed by a multi-disciplinary tumour board: paediatric oncologist, surgical oncologist, radiation oncologist, haematologist, and radiologist together. This means the plan is not one doctor's opinion — it is a team consensus based on your child's specific biology and scan findings.
Response Assessment at Each Phase
Before the protocol moves from one phase to the next, the team assesses how the tumour has responded. This involves blood tests, bone marrow checks, imaging, and a MIBG scan. If the response is not as expected, the team adjusts the plan. You will receive the results in a structured consultation — never by message alone.
Stem Cell Collection and Storage
Your child's healthy stem cells are collected during induction, before the high-dose chemotherapy phase. The collection is done via an apheresis process — similar to a blood transfusion in reverse — under the supervision of a haematologist. The cells are stored until they are needed for rescue after consolidation.
Precision Radiation Planning
Radiation therapy in high-risk neuroblastoma is targeted to the primary tumour site and, where needed, bone lesions. Modern radiation planning uses imaging to shape the beam precisely around the target, minimising dose to the surrounding healthy tissue. In children, this precision matters greatly because the body is still growing. The radiation oncologist on the tumour board is involved in planning from the beginning of treatment, not as an afterthought.
Neuroblastoma Immunotherapy in Maintenance
After consolidation and radiation, neuroblastoma immunotherapy begins. It works by helping the immune system identify and attack residual neuroblastoma cells. Immunotherapy is given in cycles in the clinic over several months. It is often administered alongside a medicine that promotes maturation of any remaining neuroblastoma cells, reducing the chance of relapse over time.
Allied Care Throughout Treatment
A diagnosis of high-risk neuroblastoma affects the whole family. Alongside oncology treatment, the CION team connects families with nutritional support to address weight and appetite challenges, psycho-oncology support for both the child and parents, and guidance on managing daily life across a treatment course that spans over a year. You do not need to figure this out alone.
Maintenance phase
Neuroblastoma immunotherapy — what happens and what to expect at home
Immunotherapy for neuroblastoma is given in the maintenance phase — after the most intensive treatment is complete. For many families, this phase brings both relief (the hardest part is behind them) and new questions about what comes next and how long it continues.
Neuroblastoma cells carry certain proteins on their surface that are not present on healthy cells. Immunotherapy uses substances that help the immune system recognise these proteins and attack the cells that carry them. This approach targets neuroblastoma cells specifically, in a way that differs fundamentally from chemotherapy, which acts on all rapidly dividing cells.
Immunotherapy is not a single infusion — it is given in scheduled cycles over several months. Each cycle involves clinic visits for the infusion, monitoring for side effects, and a recovery period before the next cycle. Side effects during immunotherapy are different from chemotherapy side effects: fever, pain, and reactions at the time of infusion are more common than the nausea and hair loss associated with earlier phases. The care team prepares families in advance for what to watch for and how to manage it at home between visits.
Alongside immunotherapy, many high-risk neuroblastoma protocols include a medicine that encourages remaining neuroblastoma cells to mature into ordinary, non-dividing cells — a process called differentiation. This medicine is given by mouth at home during the maintenance period. It is well tolerated by most children, though the team will check for specific side effects at each visit.
At the end of the maintenance phase, your child will enter a structured long-term follow-up programme. Neuroblastoma can relapse months or years after treatment ends, so regular scans and blood tests continue for several years. Your oncologist will explain the follow-up schedule and which symptoms should prompt you to call the team between scheduled visits.
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Common questions
Your questions about high-risk neuroblastoma — answered
What makes neuroblastoma "high risk" — and why does it matter?
Neuroblastoma is classified into risk groups — low, intermediate, and high — based on a combination of factors: the child's age at diagnosis, the stage of the disease (how far it has spread), the biology of the tumour cells (including whether a gene called MYCN is amplified), and specific features seen under the microscope. High-risk neuroblastoma is defined by a set of criteria that, taken together, identify tumours that are more likely to spread widely, respond poorly to standard treatment alone, and have a higher chance of coming back after initial therapy. This classification matters because it determines the intensity of treatment. High-risk neuroblastoma requires a much more intensive, multi-phase approach than low- or intermediate-risk disease. Understanding your child's risk group is the essential first step before any treatment decision is made.
What does neuroblastoma multimodal therapy mean in practice?
Multimodal therapy means using several different types of treatment in a planned sequence, where each modality does something the others cannot. For high-risk neuroblastoma, the standard approach combines intensive induction chemotherapy to shrink the tumour, surgery to remove as much tumour as possible, high-dose chemotherapy followed by an autologous stem cell rescue (using your child's own stem cells collected before the high-dose treatment), radiation therapy to the site where the primary tumour was, and then an extended maintenance phase that includes immunotherapy and a medicine to promote maturation of any remaining neuroblastoma cells. Each step builds on the previous one. Skipping or shortening any phase increases the risk of relapse. Your oncologist will map out the full sequence before treatment begins so you understand the whole journey.
What is an autologous stem cell transplant and why is it needed?
An autologous stem cell transplant (also called autologous stem cell rescue) is a procedure that allows oncologists to use very high doses of chemotherapy — doses that would permanently damage the bone marrow if given without protection. Before the high-dose chemotherapy is given, a sample of your child's own healthy stem cells (collected from the blood) is stored. After the high-dose treatment has finished its work against the neuroblastoma, the stored stem cells are given back intravenously. They travel to the bone marrow and restore its ability to make normal blood cells. The procedure is not a transplant from another person; your child's own cells are used, which greatly reduces the risk of rejection. The recovery period after the infusion is closely monitored in hospital.
What is neuroblastoma immunotherapy and when does it happen?
Neuroblastoma immunotherapy is a type of treatment that helps the immune system recognise and attack neuroblastoma cells that remain after the intensive chemotherapy and stem cell transplant phases. It is given during the maintenance phase — after the most intensive treatment is complete. Immunotherapy in this context works differently from chemotherapy: instead of directly destroying cells, it flags the neuroblastoma cells so the body's own immune system can find and destroy them. The maintenance phase also typically includes a medicine that encourages any remaining neuroblastoma cells to mature into normal, non-cancerous cells rather than continue growing. Immunotherapy is administered in clinic; it is not a tablet taken at home. The full maintenance phase lasts several months. Your oncologist will explain the schedule and what to expect at each visit.
What is a MIBG scan and why does my child need one?
MIBG stands for meta-iodobenzylguanidine, a substance that is absorbed specifically by neuroblastoma cells (and by the normal adrenal gland and some nerve cells). When a tiny amount of radioactive MIBG is given intravenously, it travels to wherever neuroblastoma cells are present in the body. A scanner then detects the radioactive signal and produces images showing exactly where the tumour and any spread are located. For neuroblastoma, MIBG scanning is an essential tool at diagnosis for staging, after each major treatment phase to assess response, and at the end of treatment to confirm that no disease remains. It is also used to guide whether MIBG therapy (a high-dose version of the same substance used as treatment) might be appropriate. The scan itself is painless, though your child will need to stay still during image acquisition.
How long does the full course of high-risk neuroblastoma treatment last?
The complete treatment course for high-risk neuroblastoma typically spans 12 to 18 months from the start of chemotherapy to the end of the maintenance phase. The induction phase (intensive chemotherapy plus surgery) takes approximately four to six months. The high-dose chemotherapy and stem cell rescue adds several more weeks of inpatient care, followed by a recovery period. Radiation therapy usually begins a few weeks after transplant recovery. The maintenance phase — which includes immunotherapy and the maturation-promoting medicine — runs for several months beyond that. Throughout this period, your child will have regular clinic visits for blood count checks, response assessments, and side-effect management. The care team will give you a written timeline at the start so you can plan as a family.
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