Medical Oncologist
CION Cancer Clinics
Surveillance for SDHx carriers: the checks, and how often | CION Cancer Clinics
Most SDH gene carriers are offered a yearly clinic review with a blood or urine hormone test, and an MRI of the neck to pelvis every two to three years. Screening usually begins in childhood and continues for life. This page explains each check, how the schedule unfolds, what can give a misleading result and which symptoms mean you should not wait for the next appointment. 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
- What checks does an SDH gene carrier need?
- What does SDH surveillance actually involve?
- How does the screening schedule unfold over the years?
- The words you will meet, in plain language
- Four things carriers tell us, and what is actually true
- What this page cannot tell you
- Common questions about SDH surveillance
The short answer
What checks does an SDH gene carrier need?
Most SDH carriers are offered a yearly check with a blood pressure reading and a blood or urine test for tumour hormones, plus an MRI scan every two to three years. The aim is to find a paraganglioma while it is small and easy to remove, long before it causes trouble.
Why screening starts in childhood
Unlike many inherited cancer genes, SDH tumours can appear in children and teenagers. Screening therefore usually begins in childhood, earlier for SDHB than for the other genes. The exact starting age is set by your team, based on the gene and on who in the family was affected.
Why the whole body is checked
A tumour can grow anywhere from the base of the skull to the pelvis. Checking only the neck, or only the adrenal glands, would miss the others. That is why the scan covers the neck, chest, abdomen and pelvis, and why the blood test looks for hormones from any of them.
Screening does not stop the tumours forming. It finds them early, when treatment is simpler.The four parts
What does SDH surveillance actually involve?
None of these tests is painful, and none uses much radiation. Together they cover every place a tumour can grow.
A yearly clinic review
A doctor asks about headaches, sweating, palpitations, a neck lump or a sound in the ear, and checks your blood pressure. It is short, but it catches changes you might not connect with your gene.
A yearly hormone test
Blood or urine is tested for metanephrines, the breakdown products of adrenaline and noradrenaline. For SDHB carriers, a related marker from dopamine is often measured as well.
To get a reliable result
- Bring a list of every medicine you take
- Rest lying down before the blood is drawn if asked
An MRI every two to three years
Either a whole-body MRI or separate MRI scans of the neck, chest, abdomen and pelvis. MRI is preferred over CT because it uses no radiation, which matters over a lifetime of scans.
Extra scans only when needed
If a test or scan shows something, a special PET scan may be used to look more closely. It is not part of routine screening for a well carrier.
Not sure whether this applies to you?
Ask an oncologistAcross a lifetime
How does the screening schedule unfold over the years?
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After a positive result: a baseline
The first round is a full hormone test and a full MRI. It shows whether anything is already there and gives a clear picture to compare against later.
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Children: a start in childhood
Children who test positive begin screening young, often before their teenage years for SDHB. Children who test negative for the family's fault need no screening at all.
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Every year: the review and the hormone test
These two happen together once a year. If both are normal, nothing else is needed until the next scan is due.
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Every two to three years: the MRI
The gap may be shorter for SDHB, or if a previous scan showed something to watch. Plan it with the yearly test when you can, to save a journey.
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Before surgery or pregnancy: an extra hormone check
An unknown hormone-releasing tumour can cause dangerous blood pressure surges under anaesthesia or during labour. A quick test beforehand rules this out.
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For life
New tumours can appear at any age, so the schedule does not end. It may be adjusted as you get older, but it is not stopped.
!
One thing that cannot wait
A sudden, severe headache with a pounding heart, heavy sweating, chest pain or a very high blood pressure reading needs same-day care. Go to the nearest emergency department and tell them you carry an SDH gene fault, which can mean a hormone-releasing tumour. Do not wait for your next scheduled check, and do not wait to see if it settles on its own.
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On your reports
The words you will meet, in plain language
- Plasma metanephrines
- A blood test for the breakdown products of adrenaline and noradrenaline. A raised level suggests a hormone-releasing tumour.
- 3-methoxytyramine
- The breakdown product of dopamine. It is especially useful for SDHB carriers, whose tumours sometimes release dopamine.
- Whole-body MRI
- A single long MRI session covering the body from head to thighs, without radiation or, in many centres, any injection.
- Baseline
- The first full set of tests. Every later result is compared with it.
- Interval
- The gap between one scan and the next. Your team sets it, and may shorten it if something needs watching.
- Incidental finding
- Something on a scan that has nothing to do with the gene. It is common and usually harmless, but it may need a separate check.
Commonly believed
Four things carriers tell us, and what is actually true
"I feel perfectly well, so I can skip this year."
Many of these tumours cause no symptoms at all while they are small. Head and neck tumours rarely release hormones. Feeling well is exactly when screening does its job.
"A CT scan is quicker and does the same thing."
CT uses radiation, and SDH carriers are scanned many times over a lifetime, often from childhood. MRI gives the information needed without that exposure. CT is kept for specific questions.
"My last scan was clear, so I am in the clear for good."
A clear scan is reassuring for now. New tumours can still appear years later, in a different place. That is why the schedule continues for life.
"A raised hormone result means I have a tumour."
Not always. Some medicines, stress and the way the sample was taken can push the result up. A borderline result is usually repeated under better conditions before anyone orders more scans.
Being straight with you
What this page cannot tell you
It cannot give you your own schedule. The starting age, the scan interval and which hormone tests are used differ between the five SDH genes, between guidelines and between families. Your plan is set by the team who knows your gene, your variant and your family history.
It cannot read your results
A borderline hormone level or a small spot on an MRI needs someone who sees these results often. What your specific result means is a question for the specialist who ordered it. Bring every earlier report, so each new result can be compared properly.
Who this does not apply to
Relatives who have tested negative for the family's known fault do not need this screening. People who inherited SDHD from their mother are usually offered a lighter plan, or none, after discussion. And a person with no SDH fault who simply has high blood pressure does not need any of it.
If you are a carrier and have fallen behind with your checks, call the helpline. Restarting is simple.Questions we are asked
Common questions about SDH surveillance
At what age should my child start screening?
Usually in childhood, and earlier for SDHB than for SDHC or SDHD. Guidelines give slightly different ages, so your team will set a start point that fits your gene and your family. A child who tests negative for the family's fault does not need screening.
Is whole-body MRI safe for children?
Yes. MRI uses a magnet and radio waves, not radiation. The main difficulty for young children is lying still for a long time. Some centres use short sessions, distraction or light sedation to help, and your team will discuss what suits your child.
Blood or urine: which hormone test is better?
Both work. Many centres prefer the blood test taken after resting lying down, because it is simple and reliable. A urine collection over a full day and night is sometimes used instead. Follow the instructions you are given closely, because preparation affects the result.
What if something is found?
Usually more tests follow first, often a special PET scan and repeat hormone levels. Small tumours are sometimes watched, and others are removed by surgery. The decision depends on the size, place and gene, and is made by a team used to these tumours.
I am pregnant. Does anything change?
Tell your obstetrician that you carry an SDH fault. A hormone test early in pregnancy can rule out a hidden tumour, which matters for a safe delivery. MRI without contrast can be used in pregnancy if a scan is needed.
Does the screening ever stop?
Not usually. Tumours can appear at any age, so carriers stay under review for life. The interval may be adjusted later on, for example if earlier rounds have all been clear, but that decision belongs to your team.
Can I do some of this closer to home?
Often the blood test can be taken locally and the result shared, as long as the laboratory handles the sample correctly. The MRI and the review are best kept in one place, so every scan is compared with the last. Ask your team which parts can move.
What if I miss a year?
Simply restart. A missed year is not a reason to give up, and it does not mean something was missed. Call to book the overdue tests, and mention any new symptoms since your last check.
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)
Medical Oncologist
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Sources
- GeneReviews (NCBI) — Hereditary Paraganglioma-Pheochromocytoma Syndromes
- National Cancer Institute — Pheochromocytoma and Paraganglioma Treatment (PDQ) – Patient Version
- MedlinePlus Genetics — Hereditary paraganglioma-pheochromocytoma
- NHS — Phaeochromocytoma
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
Whole-body MRI for SDHx carriersWhat the scan day is like, and how to prepareWhy SDHB carries the highest risk of spreadWhy SDHB carriers are watched more closelyMaternal imprinting in SDHDWhy mother-side SDHD carriers have a different planSDH gene testing cost in HyderabadWhat testing and yearly screening cost
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Do you carry an SDH fault and need a screening plan?
Tell us which gene your family carries and when you were last checked. We will help you set up a schedule and group your tests to save journeys. One helpline serves every CION centre.