CION Cancer Clinics
MEN surveillance through childhood and the teenage years | CION Cancer Clinics
A child who carries the family's MEN1 or RET change is watched with regular blood tests and occasional scans from early childhood. The aim is to find a problem before it causes symptoms, and in MEN2 to time preventive thyroid surgery correctly. This page explains what is checked, how the plan changes as a child grows, and which signs need attention the same day. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
On this page
- What does MEN surveillance look like for a child?
- What is checked in a child with MEN, and why?
- How does surveillance change as a child grows up?
- The words you will meet, in plain language
- What this page cannot tell you
- Four things parents tell us, and what is actually true
- Common questions about MEN checks in children
The short answer
What does MEN surveillance look like for a child?
A child who carries the family's MEN1 or RET change has regular blood tests, and less often scans, from early childhood. The aim is to find a problem before it causes any symptoms. For MEN2, the biggest single event is preventive thyroid surgery, at an age set by the exact RET change.
MEN1 and MEN2 are watched differently
In MEN1 the checks look for overactive glands: calcium, prolactin and blood sugar, with occasional scans of the pituitary and pancreas. In MEN2 the focus is the thyroid first, then the adrenal glands and, in some families, the parathyroid glands. The two schedules share a principle but very few of the same tests.
Why it starts before symptoms
MEN tumours are usually silent for years. A child can feel perfectly well while a hormone level is already drifting. Finding that drift on a routine blood test means treatment can be planned calmly. Waiting for symptoms means the problem is found later and is harder to treat.
A child who tested negative for the family's change does not need any of these checks.The checks themselves
What is checked in a child with MEN, and why?
Most of the work is done with blood tests. Scans are spaced out and chosen to avoid radiation where possible.
MEN1: blood tests
Calcium and parathyroid hormone for the parathyroid glands. Prolactin for the pituitary. A fasting sugar and insulin level for the pancreas, because low-sugar tumours can appear in young children.
MEN1: scans
MRI of the pituitary at intervals your endocrinologist sets, and imaging of the pancreas as the child grows. MRI uses no radiation. A young child may need sedation to lie still, which the team will plan with you.
MEN2: the thyroid
Calcitonin blood tests and a neck ultrasound before and after thyroid surgery. The timing of surgery depends on the exact RET change and on how calcitonin is behaving.
After surgery
- Daily thyroid hormone tablets
- Calcitonin checks to confirm none is left
- Calcium checks in the early weeks
MEN2: adrenal and parathyroid
Blood or urine tests for a phaeochromocytoma begin in later childhood or the teens, depending on the RET change. Calcium checks are added in MEN2A families where the parathyroid glands are at risk.
Not sure whether this applies to you?
Ask an oncologistIn a child with MEN1, sweating, shaking, confusion, odd behaviour, fainting or a fit, especially before breakfast or after sport, can mean dangerously low blood sugar. If the child is awake and can swallow safely, give a sugary drink. Then go to the nearest emergency department the same day and tell them the child has MEN1. If the child is not responding or is having a fit, call an ambulance.
Birth to adulthood
How does surveillance change as a child grows up?
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A test for the family's change
In MEN2 families the RET test is done very early, sometimes soon after birth, because thyroid surgery may be needed young. In MEN1 families testing is usually offered in early childhood.
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Early childhood
For the higher-risk RET changes, the thyroid is removed in early childhood or, for MEN2B, in infancy. MEN1 blood tests usually begin around the early school years.
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The school years
A regular round of blood tests, planned around school holidays where possible. Scans are added at intervals and grouped into one visit to save travel.
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Later childhood and the teens
MEN2 adrenal screening begins. In MEN1, pancreas imaging becomes more regular. Puberty that comes early, late or stalls should be mentioned, because the pituitary can be involved.
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Handing over to adult care
In the late teens the young person moves to an adult endocrinologist. This works best when they already know their own condition, their tests and why each one matters.
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On your child's report
The words you will meet, in plain language
- Surveillance
- Planned, repeated tests in someone who feels well, to catch a problem early. It is watching, not treatment.
- Predictive test
- A genetic test in a healthy relative for the exact change already found in the family. It answers one question: carrier or not.
- Calcitonin
- A hormone made by thyroid C cells. In MEN2 it is the main blood marker for medullary thyroid cancer.
- Prolactin
- A pituitary hormone. A high level in a child with MEN1 can point to a small pituitary tumour.
- Baseline
- The first set of results. Every later result is compared against it, so keep a copy.
- Transition clinic
- The planned handover from paediatric to adult care, usually in the late teens.
Being straight with you
What this page cannot tell you
It cannot give you your child's schedule. That depends on whether the family has MEN1 or MEN2, the exact gene change, the child's age and the results so far. Two cousins with the same change can end up on slightly different plans because their results differ.
It cannot interpret a result you are holding
Children's hormone levels change with age and puberty, so a number that looks high on an adult range may be normal for a child. What your child's specific variant means is a question for the counsellor who ordered the test. What a result means is a question for the paediatric endocrinologist.
Who this does not apply to
Children who tested negative for the family's change need none of these checks. They carry the same risk as any other child. Children in families where MEN has been suspected but never confirmed by a gene test need a different conversation, usually with a genetic counsellor first.
If you are not sure which group your child is in, ask before starting any tests.Commonly believed
Four things parents tell us, and what is actually true
In MEN2 the thyroid cancer can begin in early childhood, and in MEN1 low-sugar tumours can appear in young children. The start age is set by the condition, not by how grown-up a child seems.
The operation removes the thyroid risk. The adrenal and, in some families, parathyroid checks still lie ahead, starting in later childhood or the teens.
The value of surveillance comes from comparing each result with the last. A long gap can let a slow change go unnoticed. If a visit is missed, rebook it rather than waiting for the next one.
Teenagers manage their own care far better when they understand it. A counsellor can help you explain MEN in stages, in Telugu if that is easier, starting well before adult care begins.
Questions we are asked
Common questions about MEN checks in children
At what age should my child be tested for the family's change?
In MEN2 families, very early, because the thyroid may need removing in early childhood or infancy. In MEN1 families, testing is usually offered in early childhood, before the first checks would start. A genetic counsellor will advise on the right timing for your family.
Will my child miss a lot of school?
Usually not. Most checks are blood tests that take a morning. Scans are less frequent and can often be grouped into the same visit. Ask the team to book around school holidays and exams where possible, especially if you travel in from a district.
Are the blood tests painful for a small child?
A needle is never pleasant, but children's phlebotomists are skilled at making it quick. A numbing cream on the skin beforehand helps many children. Grouping tests so that one sample covers several checks means fewer needles over the year.
Does my child need sedation for MRI scans?
Young children often do, because they need to lie very still. Older children usually manage awake. If your child has MEN2 and is old enough for adrenal screening, the team may check the adrenals before any sedation or anaesthetic.
Can my child play sport normally?
Yes, in almost all cases. A child with MEN1 who has had low blood sugar episodes should eat before sport and carry a sugary snack. After thyroid surgery, children return to normal activity once they have healed.
What if my teenager refuses to keep having tests?
This is common and understandable. Let the teenager speak to the endocrinologist or counsellor alone for part of the visit. Hearing the reasons from a doctor, and having some say in the timing, often works better than pressure at home.
Who should coordinate my child's checks?
Ideally a paediatric endocrinologist, working with a genetic counsellor and the surgical team. One doctor who sees every result together is more useful than several who each see a part. Keep all reports in one folder in date order.
Where do we start in Hyderabad?
Bring the family's genetic report and any results your child has had. If your child has not yet been tested, a genetic counsellor can arrange it. Call the CION helpline and someone will tell you which clinic to see first.
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.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Where to find us
Our centres in and around Hyderabad
Addressed by landmark, because that is how this city navigates. One helpline books a consultation at any of these centres, and your team will tell you where counselling and testing take place.
Sources
- GeneReviews (NCBI) — Multiple Endocrine Neoplasia Type 1
- GeneReviews (NCBI) — Multiple Endocrine Neoplasia Type 2
- National Cancer Institute — Genetics of Endocrine and Neuroendocrine Neoplasias (PDQ)
- National Cancer Institute — Childhood Thyroid Cancer 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.
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Not sure which checks your child needs next?
Tell us your child's age, the family's gene result and which tests have been done. We can help you set up a schedule with a paediatric team and group the visits sensibly. One helpline serves every CION centre.