Medical Oncologist
CION Cancer Clinics
Scans for paraganglioma gene carriers: which one, and when | CION Cancer Clinics
If you carry a paraganglioma gene fault, MRI is usually the main screening scan, repeated every few years with a yearly blood or urine test. CT and PET-CT scans are added when something needs a closer look. This page explains what each scan does, why MRI is preferred for lifelong screening, how a typical cycle runs, and who does not need any of it. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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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 scan does a paraganglioma gene carrier need, and when?
- What does each scan actually do?
- What does a typical screening cycle look like?
- The words you will meet, in plain language
- MRI or CT for routine screening?
- What this page cannot tell you
- Four things families tell us about scans
- Common questions about screening scans
The short answer
Which scan does a paraganglioma gene carrier need, and when?
For routine screening, MRI is the main scan, repeated every few years alongside a yearly blood or urine test. It gives clear pictures of the neck, chest, abdomen and pelvis without any radiation. Other scans, such as CT and PET-CT, are brought in when something has been found or when MRI cannot be done.
Why MRI comes first
Carriers are screened for decades, and for some genes screening starts in childhood. Radiation from repeated CT scans adds up over a lifetime, so a scan that uses none is the sensible default. MRI also shows the neck and skull base, where many of these tumours grow, in fine detail.
When the other scans come in
If the blood test is raised, if MRI shows a spot, or if surgery is being planned, your team may add a CT or a PET-CT. These answer different questions: exactly where a tumour is, whether there are others, and whether any has spread. They are tools for a specific question, not for routine checks.
The right scan depends on your gene, your age and what the team is looking for. There is no single best scan for everyone.The scans, one by one
What does each scan actually do?
Each scan has a job it does well and a job it does poorly. Knowing which is which makes the plan easier to follow.
MRI
Uses a strong magnet and radio waves. It can cover the neck down to the pelvis in one visit, either as a whole-body MRI or as a set of regional scans.
Worth knowing
- No radiation at all
- Long, noisy, and inside a tunnel
- Sometimes needs a contrast injection
CT
A fast X-ray scan that gives detailed pictures, especially of the chest. It uses radiation, so it is kept for specific questions, or for people who cannot have MRI because of certain implants or severe claustrophobia.
DOTATATE PET-CT
A small amount of a tracer that sticks to these tumours is injected, then a PET-CT shows where it collects. It is very sensitive, particularly for SDH-related tumours. It is used to confirm a finding and look for others, not for routine screening.
FDG PET-CT and MIBG scans
An FDG PET-CT tracks sugar use and picks up SDHB-related tumours well. An MIBG scan is used mainly to check whether a particular radioactive treatment could work. Both are specialist scans ordered for a reason.
Not sure whether this applies to you?
Ask an oncologistHow the plan runs
What does a typical screening cycle look like?
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Every year: the blood or urine test
Metanephrines are measured, blood pressure is checked and you are asked about symptoms such as headaches, sweating or a pounding heart. This catches tumours that release hormones.
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Every few years: an MRI from neck to pelvis
This finds tumours that release no hormone, including most in the head and neck. The interval depends on your gene and age, and your team will give you a written schedule.
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If the blood test is raised
The test is usually repeated first. If it stays raised, an MRI or CT is arranged sooner than planned to look for the source.
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If a scan shows a spot
A DOTATATE PET-CT may be added to confirm what it is and to check for tumours elsewhere. Small spots are sometimes simply rescanned after a set interval.
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A decision is made together
Your team explains whether to treat now or watch, and the screening cycle carries on. Keeping every scan in one folder, or on one disc, makes each comparison more accurate.
On your scan report
The words you will meet, in plain language
- Whole-body MRI
- One MRI session that covers the body from head or neck to pelvis. Not every centre offers it, so separate regional scans are also used.
- Contrast
- A dye injected into a vein to make blood vessels and tumours stand out. MRI and CT use different dyes.
- Tracer
- A small amount of a radioactive substance used in PET and MIBG scans. It shows where certain cells are active.
- Avid
- A report word meaning a spot took up the tracer. It suggests, but does not prove, that the spot is a tumour.
- Incidental finding
- Something unrelated that the scan happened to show, such as a kidney cyst. Most are harmless.
- Interval scan
- A repeat scan after a set time, to see whether a small spot has changed.
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Side by side
MRI or CT for routine screening?
MRI
CT
No radiation
Uses radiation, which adds up over years
Takes much longer, especially for several areas
Over in a few minutes
Enclosed and noisy; young children may need sedation
Open ring and quick; sedation rarely needed
Clearer pictures of the neck and skull base
Clearer pictures of the lungs
Preferred for lifelong screening
Used when MRI cannot be done
Being straight with you
What this page cannot tell you
It cannot set your schedule. How often you need scans, from what age, and which type, depends on your gene, your age, your past results and what has happened in your family. International guidance also differs slightly between expert groups. Your endocrinologist, radiologist and genetic counsellor agree a plan for you.
It cannot read your scan
A spot on a report does not always mean a tumour, and the words used can sound more alarming than the finding is. Ask the doctor who ordered the scan to explain it. What your specific variant means is a question for the counsellor who ordered the gene test.
Who this does not apply to
Most people never need this kind of screening. It is for confirmed carriers of a paraganglioma gene fault and people already treated for one of these tumours. Relatives who test negative for the family's fault do not need it. Studies comparing screening schedules are still small, so the evidence for exact intervals is limited.
Whole-body MRI and DOTATATE PET-CT are offered at only a few centres in Telangana. Ask where yours will be done before the date.Commonly believed
Four things families tell us about scans
"PET-CT is the best scan, so I should have it every year."
It is very sensitive, but it uses radiation and is meant for answering a specific question. For routine screening over decades, MRI with a yearly blood test is the safer pattern.
"CT is quicker and cheaper, so it is just as good."
CT is excellent for some questions, but repeated CT over a lifetime adds radiation that MRI avoids. For head and neck tumours, MRI often shows more.
"The contrast dye will harm my kidneys."
For most people with healthy kidneys, MRI contrast is safe. Tell the scan team about kidney problems, allergies or pregnancy, and they will adjust the plan or skip the dye.
"My scans have been clear for years, so I can stop."
Tumours can appear at any age in carriers. A long run of clear scans is good news, but the screening plan is meant to continue for life unless your team changes it.
Questions we are asked
Common questions about screening scans
Is whole-body MRI available in Hyderabad?
It is offered at some larger centres. Where it is not, the same areas can be covered with separate MRI scans of the neck, chest, abdomen and pelvis, sometimes over two visits. Ask your team which approach they use and where.
How should I prepare for the MRI?
You will be asked about metal implants, pacemakers and past surgery. Remove jewellery and wear clothes without metal. You may be asked not to eat for a few hours if the abdomen is being scanned. Earplugs are provided for the noise.
Can I have MRI if I have metal in my body?
Many implants are safe for MRI, but some are not. Bring details of any implant, heart device or surgery to the scan centre in advance. If MRI is not safe for you, CT is used instead.
Will my child need sedation?
Young children often find it hard to lie still for a long scan, so light sedation or a short anaesthetic may be offered. Older children usually manage with preparation, a parent in the room and breaks between areas.
Do I stop any medicines before a PET-CT?
Sometimes. Certain medicines can interfere with tracer uptake, especially for MIBG scans. The scan centre will give instructions. Never stop a blood pressure medicine on your own without your doctor's advice.
What if the scan finds something unrelated?
Scans of large areas often show small unrelated findings, such as cysts. Most need nothing more. Your doctor will tell you whether any finding needs another look, and which specialist should see it.
Can I have scans closer to home?
An MRI can sometimes be done at a good local centre, as long as the images are shared with your specialist team. PET-CT with special tracers is available at fewer places. Ask for your images on a disc or a link every time.
Are screening scans covered by insurance?
Cover for screening in people without a diagnosed tumour varies between private policies and schemes such as Aarogyasri and Ayushman Bharat. Scans done to diagnose or treat a tumour are more often covered. Ask the billing desk before booking.
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) — Hereditary Paraganglioma-Pheochromocytoma Syndromes
- National Cancer Institute — Pheochromocytoma and Paraganglioma Treatment (PDQ) - Patient Version
- MedlinePlus — MRI Scans
- MedlinePlus Genetics — Hereditary paraganglioma-pheochromocytoma
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
Biochemical screening: metanephrines explainedThe yearly blood or urine test that pairs with your scansHead and neck paragangliomas and hearingWhat MRI is looking for in the neck and earLiving with a lifelong screening programmeKeeping up with decades of scansHereditary paraganglioma and phaeochromocytoma explainedThe syndrome and the genes, from the start
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We can review your gene result and past scans and help set out a clear screening schedule. One helpline serves every CION centre.