Medical Oncologist
CION Cancer Clinics
ALK and PHOX2B: which cancers, and what risk | CION Cancer Clinics
An inherited fault in ALK or PHOX2B mainly raises the risk of neuroblastoma, a nerve cell tumour of babies and young children. The risk is real but not certain, and it falls as a child grows. This page explains which tumours and conditions are linked, how risk changes with age, and why it is different from ALK positive lung cancer in adults. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Which cancers does an inherited ALK or PHOX2B change raise?
- Which tumours and conditions are connected to these genes?
- How does the risk change as a child grows?
- The words you will meet, in plain language
- How does inherited neuroblastoma differ from the usual kind?
- What parents often fear, and what is true
- What this page cannot tell you
- Common questions about ALK and PHOX2B cancer risk
The short answer
Which cancers does an inherited ALK or PHOX2B change raise?
An inherited fault in ALK or PHOX2B mainly raises the risk of neuroblastoma, a tumour of young nerve cells that affects babies and small children. The risk is real but not certain. Many children who inherit one of these faults never develop a tumour at all, and some carrier parents only learn of their fault after a child is diagnosed.
Why the risk sits mostly in early childhood
Neuroblastoma grows from nerve cells that are still maturing. Those cells are most plentiful before birth and in the first years of life. Once they have matured, there are far fewer cells left that can turn into this tumour. That is why doctors focus their checks on babies and young children in these families.
This is not the ALK in lung cancer
Adults with lung cancer are often told their tumour is ALK positive. That is a change found only inside the tumour. It was not inherited and it cannot be passed to children. Tumour testing of that kind is covered on our targeted therapy pages.
An inherited fault raises risk. It does not decide what will happen to any one child.What is linked
Which tumours and conditions are connected to these genes?
The list is shorter than for most cancer genes. That is reassuring, but it also means the evidence comes from fairly few families.
Neuroblastoma
The main risk for both genes. In inherited cases it tends to appear at a younger age than usual, and a child can occasionally develop more than one separate tumour.
Where it usually starts
- The adrenal glands above the kidneys
- Nerve tissue along the spine
- The chest, neck or pelvis
Milder relatives of neuroblastoma
Ganglioneuroblastoma and ganglioneuroma grow from the same nerve cells but behave more gently. Some carriers develop one of these rather than neuroblastoma itself.
Breathing and bowel conditions with PHOX2B
PHOX2B also guides the nerves that control automatic breathing and the bowel. Some faults cause a breathing problem during sleep, called congenital central hypoventilation syndrome, or Hirschsprung disease, where part of the bowel lacks nerve cells.
The exact type of PHOX2B change strongly affects tumour risk. Some types carry far more than others.What is not clearly linked
No clear raised risk of adult cancers has been shown for inherited ALK or PHOX2B faults. Studies so far are small, so doctors say this with some caution.
Not sure whether this applies to you?
Ask an oncologistRisk across a lifetime
How does the risk change as a child grows?
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Before birth
Neuroblastoma can begin before a baby is born. Occasionally it is seen on a pregnancy scan, especially in families already known to carry a fault.
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Infancy
This is when the risk is highest. Inherited neuroblastoma is most often found in the first year or so of life, earlier than the usual kind.
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The toddler and preschool years
Risk stays raised but begins to fall. Doctors usually keep a regular checking plan going through this period.
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School age
New tumours become much less likely as nerve cells finish maturing. Checks usually become less frequent, then stop, on the advice of the child's specialist.
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Adult life
Adult carriers are not known to face a raised cancer risk from the fault. What matters for them is that each of their children has an even chance of inheriting it.
On your report
The words you will meet, in plain language
- Neuroblastoma
- A tumour that grows from immature nerve cells, almost always in babies and young children.
- Germline
- Present in every cell from birth, and so able to pass to children. This page is about germline faults.
- Somatic
- Found only inside a tumour. ALK changes in adult lung cancer are somatic and are not inherited.
- Penetrance
- How often a fault actually leads to a tumour. For these genes it is well short of every carrier.
- Surveillance
- A planned series of checks, such as scans and urine tests, to find a tumour early if one appears.
- Multifocal
- More than one separate tumour growing at the same time. It is more common in inherited neuroblastoma.
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Side by side
How does inherited neuroblastoma differ from the usual kind?
Inherited neuroblastoma
The usual, non-inherited kind
Often found at a younger age
Found across a wider span of early childhood
Occasionally more than one tumour
Almost always a single tumour
Other relatives may have had it
No one else in the family affected
Brothers and sisters can be tested
Siblings need no genetic testing
Carrier children may need regular checks
Routine child health care is enough
Commonly believed
What parents often fear, and what is true
"My child carries the fault, so a tumour is certain."
It is not. Many carriers never develop neuroblastoma. The fault raises risk, which is why checks are offered, but it does not decide the outcome.
"My father has ALK positive lung cancer, so our children are at risk."
ALK in lung cancer is almost always a change inside the tumour, not an inherited fault. It does not pass to children and is a separate question from neuroblastoma risk.
"Neither parent is ill, so neither can carry it."
A parent can carry an ALK or PHOX2B fault and stay well all their life. Testing parents is often how the family learns where the fault came from.
"Once the tumour is removed, the risk is over."
In inherited cases a second, separate tumour can occasionally appear. That is why follow-up continues through early childhood, as the specialist advises.
Being straight with you
What this page cannot tell you
It cannot put a number on your child's risk. Published figures come from small groups of families and vary widely between studies. The honest summary is a substantially raised risk in early childhood, well short of certainty, and lower still for some PHOX2B changes.
It cannot interpret your child's result
What your specific variant means, including which type of PHOX2B change it is, is a question for the counsellor or paediatric oncologist who ordered the test. They can tell you how it shapes your child's checking plan.
Who this does not apply to
Most children with neuroblastoma do not have an inherited fault, and their brothers and sisters do not need genetic testing. Adults with ALK positive lung cancer are also not covered here. This page is only for families where an inherited fault has been found or strongly suspected.
If you are unsure whether your child's tumour was tested for an inherited cause, ask the treating team.Questions we are asked
Common questions about ALK and PHOX2B cancer risk
Does an inherited ALK fault cause lung cancer?
Not as far as current evidence shows. The ALK change that guides lung cancer treatment is almost always inside the tumour only. An inherited ALK fault is linked with neuroblastoma in childhood, which is a different situation entirely.
Can an adult carrier develop neuroblastoma?
It is very uncommon. Neuroblastoma is almost entirely a childhood tumour, even in carriers. Adult carriers are usually told what the fault means for their children rather than for themselves.
Are ALK and PHOX2B risks the same?
No. ALK faults mainly raise neuroblastoma risk. PHOX2B faults can also cause breathing or bowel conditions, and their tumour risk depends heavily on the exact type of change. Your counsellor will explain which applies.
If one child had neuroblastoma, will their siblings get it?
Only if an inherited fault is found. In most families it is not, and siblings are at no raised risk. If a fault is found, siblings can be tested, and those who carry it can be offered checks.
Can the tumour be found before symptoms appear?
That is the aim of a checking plan in carrier children. Scans of the tummy and chest, and urine tests for substances these tumours release, can pick up a tumour early. Your specialist decides which checks suit your child.
Does breathing trouble in sleep mean my child has PHOX2B?
Not necessarily. Many things cause breathing problems in babies. A PHOX2B condition is rare and is diagnosed by specialists with specific tests. If your baby has worrying pauses in breathing, see a doctor promptly.
Should adults in the family be tested too?
Parents are often tested to learn which side the fault came from. That helps decide which other children, nieces and nephews may need testing. Adult carriers usually need no checks for themselves.
Where can we get advice in Telangana?
Start with your child's paediatric oncologist and ask for a genetic counsellor. Call the CION helpline if you are not sure who to approach, and someone will point you to the right clinic.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI) — ALK-Related Neuroblastic Tumor Susceptibility
- GeneReviews (NCBI) — Congenital Central Hypoventilation Syndrome
- MedlinePlus Genetics — Neuroblastoma
- National Cancer Institute — Neuroblastoma Treatment (PDQ)–Patient Version
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
What the ALK and PHOX2B genes doHow these genes shape developing nerve cellsALK and PHOX2B positive: what happens nextThe checking plan after a positive resultTesting the family for ALK and PHOX2BWhich brothers, sisters and parents to testFamilial neuroblastoma: how rare is it?How often neuroblastoma actually runs in families
Talk to us
Has your child's team found an ALK or PHOX2B fault?
Tell us what the report says and who in the family is affected. We can help you find a counsellor and a paediatric specialist to plan the next steps. One helpline serves every CION centre.