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Childhood Cancer Types — Parent’s Guide
Rare childhood cancers — an overview for families
Medically reviewed by Dr. Naresh Gundu, DM (Medical Oncology) · Last reviewed June 2026
If your child has been diagnosed with a rare childhood cancer — or if you are trying to understand an uncommon tumour type that a doctor has mentioned — this page is written for you. Rare childhood cancers and rare pediatric tumours cover a wide range of conditions, each with its own biology. What they share is the need for careful specialist assessment, molecular tumour testing, and a multidisciplinary team that has encountered these diagnoses before.
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Understanding the diagnosis
What do we mean by a “rare childhood cancer”?
Childhood cancer is itself uncommon — far less common than cancer in adults. But within the group of childhood cancers, some tumour types are seen only rarely, even by oncologists who specialise in treating children. A tumour type is generally considered rare when it occurs in fewer than approximately six new cases per million children each year. These rare childhood cancers and uncommon cancers in children span a wide biological spectrum: they include certain tumours of the adrenal gland, specific liver tumours, some germ-cell tumours, unusual brain tumours, rare soft-tissue and bone tumours, and cancers of organs that are more commonly affected in adults (such as the thyroid, thymus, or colon) when they arise in children.
Because individual oncologists may encounter only a handful of these tumour types across an entire career, the diagnosis can be more uncertain and the treatment less straightforward than for a common childhood cancer with a well-established protocol. The biopsy pathology may require specialist re-review. The molecular testing needed to identify the exact tumour subtype may not be available everywhere. And the guidance on treatment — which for common cancers comes from decades of large clinical trials — may rely on smaller studies, registry data, or adult-cancer experience applied carefully to a child’s case.
This does not mean that a rare childhood cancer is untreatable or that outcomes are always poor. Many rare paediatric tumours respond well to established treatment approaches, and some — such as infantile fibrosarcoma in very young children — carry a generally favourable outlook when treated promptly and appropriately. What it does mean is that expert assessment, specialist pathological review, and multidisciplinary team planning matter especially in these cases.
If you have been told your child has a rare or uncommon cancer and you are looking for a second opinion, or if you want to understand the diagnosis more fully before agreeing to a treatment plan, we welcome you for a detailed consultation. You deserve time to understand what your child is facing — and we will walk this journey with you, one clear step at a time.
Uncommon cancers in children — the main groups
Rare childhood cancer types your team may discuss
These are some of the rarer and more uncommon cancers in children and adolescents. Each group has its own biology, its own warning signs, and its own treatment considerations. Click through to a specific page to read in more detail, or book a consultation so we can explain what applies to your child’s situation.
Adrenal gland — rare
Adrenocortical carcinoma (ACC)
A cancer of the outer layer (cortex) of the adrenal gland. It is very rare in children, most common under five years of age. Many children with ACC have a tumour that produces hormones — most often androgens (male hormones) — causing early or unexpected puberty signs such as rapid growth, body-hair development, or voice changes in a young child. An adrenal tumour producing these changes in a child warrants urgent specialist evaluation. Molecular testing (including for TP53 changes) is an important part of the diagnostic workup.
- Hormonal symptoms are an important clue: early puberty in a young child can signal an adrenal tumour
- Diagnosis requires imaging (CT or MRI of the abdomen) and often surgical removal
- Genetic testing may be recommended for the child and family
Kidney — very rare
Malignant rhabdoid tumour (MRT)
A highly aggressive and rare tumour that most commonly arises in the kidney (where it is called rhabdoid tumour of the kidney) but can also occur in the brain and soft tissues. It predominantly affects infants and very young children, typically under two years of age. MRT is defined by the loss of function of a gene called SMARCB1 (also called INI1), and confirming this change is now a standard part of the pathological diagnosis. Treatment is intensive and typically involves surgery, chemotherapy, and in some cases radiation. MRT is one of the rarer paediatric tumours where clinical trial enrolment is particularly valuable, as it increases access to newer treatment approaches.
- Most common in infants; often presents with an abdominal mass
- SMARCB1 testing of the tumour tissue is required for accurate diagnosis
- Genetic counselling for the family is routinely offered, as some children have an inherited change
Liver — uncommon
Hepatocellular carcinoma (HCC) in children
Hepatocellular carcinoma, the most common form of liver cancer in adults, is uncommon in children but does occur — particularly in adolescents. In children, HCC may arise in the setting of an existing liver condition (such as chronic hepatitis B infection, metabolic liver disease, or certain inherited conditions affecting the liver), or it may arise without a known prior liver problem. It is distinct from hepatoblastoma, which is a different and more common liver cancer of early childhood with a different treatment approach. The distinction matters because HCC and hepatoblastoma are managed very differently. Imaging, tumour markers (especially AFP), and biopsy are all part of the diagnostic process.
- Adolescents with unexplained liver mass and elevated AFP should be evaluated promptly
- HCC and hepatoblastoma require different treatment pathways — accurate pathological diagnosis is essential
- A hepatitis B vaccination history and liver function assessment are part of the initial workup
Head & neck — rare
Nasopharyngeal carcinoma (NPC)
A cancer arising at the back of the nasal cavity (the nasopharynx). It is uncommon in adults in most of the world and rare in children, though it is seen with greater frequency in certain parts of South and Southeast Asia, parts of Africa, and North Africa. In children, nasopharyngeal carcinoma is strongly associated with Epstein-Barr virus (EBV) infection, which is one of the features that distinguishes it from adult forms of the disease. It often presents with a neck lump (from lymph node involvement), nasal obstruction or nosebleeds, ear symptoms, or hearing change. In children, NPC typically responds well to radiation therapy combined with chemotherapy.
- A persistent neck lump combined with nasal symptoms in an older child or adolescent warrants ENT and oncology review
- EBV blood testing is a useful diagnostic aid
- Radiation therapy to the nasopharynx and neck nodes is the primary treatment modality
Thyroid — uncommon in young children
Thyroid cancer in children
Thyroid cancer is rare in young children but becomes more common in adolescents, particularly teenage girls. The most common type in children is papillary thyroid cancer — the same type most often seen in adults — and it generally has a good long-term outlook when treated appropriately. Thyroid cancer in children can behave somewhat differently from the adult form: it is more likely to have spread to lymph nodes in the neck at the time of diagnosis, and spread to the lungs is also seen. However, even children with nodal or pulmonary spread generally respond well to surgery and radioiodine therapy. A thyroid nodule or neck lump in a child should be assessed by an endocrinologist and a surgical team with experience in paediatric thyroid disease.
- A painless neck lump on or near the thyroid in a child or adolescent deserves ultrasound evaluation
- Surgery (removal of some or all of the thyroid) is the cornerstone of treatment
- Long-term follow-up is important even after successful treatment
Rare brain tumours
Rare and unusual brain tumours in children
Beyond the most common paediatric brain tumours (such as medulloblastoma, high-grade glioma, and ependymoma), there is a wide group of rare and unusual brain tumours that can occur in children. These include atypical teratoid rhabdoid tumour (ATRT), choroid plexus carcinoma, pineal region tumours (such as pineoblastoma), primary CNS lymphoma in children, and others. Each has a different molecular profile, a different pattern of behaviour, and a different treatment approach. For rare brain tumours, comprehensive molecular profiling of the tumour tissue is now considered standard — it often changes or refines the diagnosis compared to microscopic appearance alone, and it guides targeted or protocol-based treatment decisions.
- Molecular profiling of the tumour is essential for accurate diagnosis of rare brain tumours
- Treatment typically requires input from paediatric neurosurgery, neuro-oncology, and radiation oncology
- Second pathological review at a specialist centre is strongly recommended for unusual brain tumours
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The diagnostic and treatment journey
How a rare childhood cancer is diagnosed and managed
For any uncommon cancer in a child, the path from first concern to confirmed diagnosis and treatment plan follows a set of well-established steps. Understanding these steps can help you feel less overwhelmed and more prepared at each appointment.
Clinical assessment and initial imaging
The first step is a full clinical assessment by a paediatric oncologist — a doctor who specialises in cancer in children. This includes a thorough physical examination, a detailed review of your child’s symptoms and timeline, and a look at any previous test results or scans you have brought. Initial imaging (usually an ultrasound or MRI) is arranged if it has not already been done. This step establishes the size, location, and extent of the tumour before any tissue sample is taken.
Biopsy — planned with precision
Obtaining a tissue sample (biopsy) is essential to confirm the diagnosis. For rare tumours, the way the biopsy is planned matters enormously: the site of entry, the route taken, and the amount of tissue obtained all affect both the accuracy of the diagnosis and the feasibility of subsequent surgery. At CION, the biopsy approach is decided by the multidisciplinary team — surgeon, radiologist, and oncologist together — so that tissue is obtained safely and in a way that does not compromise future surgical options. A core-needle biopsy (using a hollow needle to remove a small cylinder of tissue) is preferred in most cases.
Specialist pathology review and molecular testing
The biopsy tissue is examined under the microscope by a pathologist. For a rare childhood tumour, specialist pathological review — ideally by a pathologist with specific paediatric oncology experience — is strongly recommended before the diagnosis is finalised. Alongside standard microscopic examination, modern molecular testing is now an essential part of diagnosing most rare paediatric tumours. This includes immunohistochemistry (protein-marker staining), FISH (to detect specific chromosomal changes), and in many cases next-generation sequencing (to look for a broad panel of relevant gene changes). These results can confirm the tumour type, reveal its molecular “driver,” and sometimes identify targetable changes that alter the treatment plan.
Staging — understanding how far the cancer has spread
Once the tumour type is confirmed, staging investigations establish whether the cancer is localised (confined to its site of origin) or has spread to nearby lymph nodes, the lungs, the liver, bone marrow, or elsewhere. The specific tests used depend on the tumour type — they may include a CT scan of the chest, abdomen, and pelvis; an MRI of the primary tumour site; a bone scan or PET-CT; and a bone marrow biopsy if relevant. Staging determines the treatment approach and allows your team to give you a realistic picture of the road ahead.
Multidisciplinary tumour board review
Before any treatment begins, every paediatric case at CION — however rare the tumour — is presented at a multidisciplinary tumour board. This means medical oncologists, surgical oncologists, radiation oncologists, radiologists, and pathologists all review the imaging, pathology, and molecular results together and agree on a treatment plan. For rare tumours, this step is especially important, because the combined expertise of a team is more likely to produce the right plan than any individual specialist working alone. The tumour board recommendation is then explained to your family in full, in plain language, at a dedicated 45-minute appointment.
Treatment delivery and ongoing support
Treatment for rare childhood cancers typically involves one or more of surgery, chemotherapy, and radiation therapy — in combinations and sequences that depend on the specific tumour type, its location, and its stage. For some rare tumours with specific molecular targets, targeted therapies may be available within a clinical trial or on a compassionate-use basis. Throughout treatment, your child’s team monitors response with imaging and blood tests, adapts the plan if needed, and coordinates care with nutritionists, psycho-oncologists, and other allied specialists. After treatment ends, regular follow-up continues to check for any signs of recurrence and to monitor long-term health.
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Common questions
Your questions about rare childhood cancers — answered
What makes a childhood cancer "rare"?
Childhood cancer as a whole is uncommon — but within that group, some tumour types are rarer still, defined by the medical community as occurring in fewer than six cases per million children per year. These include cancers such as adrenocortical carcinoma, malignant rhabdoid tumour, nasopharyngeal carcinoma, thyroid cancer in very young children, and several others. Because individual oncologists see only a handful of these cases in a career, families often benefit from seeking evaluation at a centre where tumour-board review and specialist consultation are standard practice. At CION, every paediatric case — however rare the tumour — is assessed by a multidisciplinary team rather than a single doctor, so the plan you receive reflects the combined expertise of medical, surgical, and radiation oncologists.
Are rare childhood cancers treated differently from common childhood cancers?
Yes, in meaningful ways. Common childhood cancers such as acute lymphoblastic leukaemia have well-established, protocol-driven treatment pathways that are refined over decades of clinical trial experience. Rare childhood tumours often lack the same breadth of trial data, which means treatment decisions draw more heavily on tumour biology (molecular and genetic testing of the tumour), analogies with better-studied adult tumours of the same cell type, and international expert consensus. Molecular profiling of the tumour tissue — looking for the genetic changes that are driving the cancer to grow — is particularly important for rare tumours because it can identify specific vulnerabilities that guide treatment. Families dealing with a rare paediatric tumour should ask whether comprehensive molecular testing has been done and whether the case has been reviewed by a specialist in that tumour type.
Should I seek a second opinion for a rare childhood cancer diagnosis?
A second opinion is strongly encouraged for any rare childhood cancer. Because these tumours are seen infrequently, even experienced pathologists can find them challenging to classify with certainty, and the same applies to treatment planning. A second opinion from a centre with a dedicated paediatric oncology team — ideally one with access to molecular pathology — can confirm the diagnosis, identify the tumour subtype more precisely, and sometimes suggest treatment options that were not initially considered. At CION, a free written second opinion is included with the first consultation for all cancer patients. You do not need to feel disloyal to your treating doctor by seeking one; a good clinical team will welcome it.
My child's tumour type is very unusual. How is the treatment plan decided?
When a tumour type is very unusual, the treatment plan is typically built from three sources: the results of molecular and genetic testing of the tumour (which can identify specific pathways the cancer depends on); published evidence from studies in adults with the same tumour type, where paediatric data is limited; and expert consensus from multidisciplinary tumour boards that bring together specialists across oncology disciplines. International collaboration is also increasingly important — rare tumour registries and research networks allow centres across the world to share data on small numbers of cases and build collective knowledge. If you have been told your child has a tumour type with no established treatment protocol, ask whether the case has been discussed with an international rare-tumour network, and whether molecular profiling has been completed.
What is adrenocortical carcinoma in children?
Adrenocortical carcinoma (ACC) is a rare cancer that arises in the outer layer (cortex) of the adrenal gland, a small gland that sits above each kidney. It is uncommon in adults and very rare in children. When it does occur in children, it most frequently appears in the first five years of life, with a second smaller peak in adolescence. In many children with ACC, the tumour produces hormones — most often androgens (male hormones), which can cause early signs of puberty, rapid growth, and body-hair development in a young child. An adrenal tumour that causes these hormonal changes in a young child warrants urgent specialist evaluation. In parts of southern Brazil, a specific inherited genetic change (TP53 R337H) is associated with a much higher rate of childhood ACC than seen elsewhere in the world, but sporadic cases occur in all populations.
How does CION support families during diagnosis and treatment of a rare childhood cancer?
We understand that receiving a rare diagnosis means you are often navigating unfamiliar territory with very little guidance available online or from people around you. At CION, every paediatric cancer family — regardless of the tumour type — receives a 45-minute consultation so there is time to explain the diagnosis in plain language, answer your questions, and map out the next steps without rushing. Every case goes to a multidisciplinary tumour board, so you are never dependent on the opinion of a single specialist. We also offer free written second opinions, transparent explanations of costs, and access to our team for follow-up questions. We walk this journey with you — from the first uncertain appointment through treatment and beyond.
Learn more about specific childhood cancer types at CION:
Clinical information on this page is authored from established paediatric-oncology knowledge and international guidelines (WHO, NCCN, Children’s Oncology Group). It is reviewed for accuracy but is not a substitute for individual medical advice from a qualified oncologist.
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