Medical Oncologist
CION Cancer Clinics
Living with a lifelong paraganglioma screening programme | CION Cancer Clinics
Carrying a paraganglioma gene fault means a screening programme that runs for life: a blood or urine test for the hormones these tumours make, and scans at longer gaps. It works because tumours found this way are usually small and easier to remove. This page covers what the years actually look like, how to keep it going from a district, and the one symptom that cannot wait. 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
- What does lifelong screening for paraganglioma actually involve?
- What the programme asks of you each year
- What a typical year in the programme looks like
- 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 living with paraganglioma screening
The short answer
What does lifelong screening for paraganglioma actually involve?
It involves two kinds of check, repeated for life. The first is a blood or urine test that measures metanephrines, the substances left behind when the body breaks down adrenaline and noradrenaline. The second is a scan, usually an MRI, that looks from the base of the skull down to the pelvis. The blood or urine test is usually done once a year. The scans come at longer gaps that your team sets.
Why it does not simply stop
These tumours can appear at almost any age, and one person can develop more than one over a lifetime, including after a first tumour has been removed. No age has been identified after which the risk switches off. That is why the programme is described as lifelong, and why missing a year matters more than it seems.
Why it is worth the effort
A tumour found by screening is usually smaller, and it is often found before it has pushed up blood pressure or damaged anything. Smaller tumours are easier and safer to remove. With some genes, especially SDHB, the chance of a tumour spreading is higher, so finding it early matters even more. The exact plan depends on which gene your family carries and on your own history.
Screening does not stop a tumour forming. It finds one while it is still small.Piece by piece
What the programme asks of you each year
Most of it is routine. Knowing what each part is for makes it easier to keep going when you feel perfectly well.
The hormone test
A blood or urine sample checked for metanephrines. Many of these tumours release adrenaline-like hormones, so a raised level can be the first sign, even before a scan shows anything.
Before the test
- Tell the team every medicine you take
- Ask whether to avoid coffee or tea beforehand
- For a blood sample, you may be asked to lie down and rest first
The scan
MRI is usually preferred because it uses no radiation, which matters when scans are repeated for decades. Some tumours in the neck make no hormones at all, and only a scan will find them.
Everyday awareness
A home blood pressure machine is useful. So is knowing the symptoms that should prompt an early check rather than waiting for the next appointment.
Write down attacks of headache, sweating or a pounding heart, with the date and what you were doing.Telling other doctors
Any surgeon, anaesthetist, dentist planning sedation or obstetrician needs to know you carry the fault. A hidden tumour can cause a dangerous rise in blood pressure during a procedure. A short letter from your team kept in your wallet does this job.
Not sure whether this applies to you?
Ask an oncologistHow the rhythm works
What a typical year in the programme looks like
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A fixed month, chosen by you
Pick one month each year and keep it. Many families tie it to a festival or a birthday so it is hard to forget. Keep every report in one folder, paper or on your phone.
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The hormone test
The sample is taken and sent to a laboratory that runs the test regularly. Handling matters, so ask where it will be processed if you give the sample outside the main centre.
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The scan, in the years it is due
Your team tells you which years include an MRI and which parts of the body it covers. The scan takes longer than most people expect, so keep the day free.
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The review
Someone who knows your gene looks at the hormone result and the images together. A borderline result is common and usually means a repeat test, not an operation.
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Life events that change the plan
Planning a pregnancy, any operation, new symptoms or a new medicine can all bring a check forward. Tell the team early rather than waiting for the next scheduled visit.
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One thing that cannot wait
Sudden attacks of severe headache, a pounding or racing heart, heavy sweating, chest pain or a very high blood pressure reading can mean a tumour is releasing a surge of hormones. The same can happen after an anaesthetic, a procedure or certain medicines. Go to the nearest emergency department the same day and tell them you carry a paraganglioma gene fault. Do not wait for your next scheduled test.
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On your reports
The words you will meet, in plain language
- Paraganglioma
- A tumour of nerve-related tissue that can grow in the neck, chest, abdomen or pelvis. Most are not cancer, but some can spread.
- Phaeochromocytoma
- The same kind of tumour when it grows inside the adrenal gland, which sits on top of the kidney.
- Metanephrines
- What is left after the body breaks down adrenaline and noradrenaline. High levels suggest a tumour is making these hormones.
- SDH genes
- A family of genes, written SDHA, SDHB, SDHC, SDHD and SDHAF2. A fault in any of them is the most common inherited cause.
- Functional tumour
- A tumour that releases hormones. A silent one releases none, and is found only on a scan.
- Surveillance
- Planned, repeated checks in someone who is well, done to find a problem early.
Commonly believed
Four things carriers tell us, and what is actually true
"My last scans were clear, so I can take a break."
A clear scan tells you about that day. A new tumour can start growing afterwards, which is why the checks are repeated. Gaps of several years are how tumours get large enough to cause trouble.
"I feel fine, so there cannot be a tumour."
Many tumours found by screening cause no symptoms at all. Some in the neck make no hormones, so even the blood test stays normal. Feeling well is exactly the situation screening was designed for.
"A CT scan is quicker, so it is just as good."
CT is useful when a question needs answering fast. For routine checks repeated across a lifetime, MRI avoids the radiation that would otherwise add up, which is why most teams prefer it.
"My children are too young to think about this."
This is one of the few inherited conditions where testing and screening can start in childhood, because tumours sometimes appear young. When that should begin depends on the gene. Ask your counsellor rather than waiting.
Being straight with you
What this page cannot tell you
It cannot tell you your own schedule. Which tests you need, how often and from what age depend on the exact gene, on the variant within it, on whether you have already had a tumour and on where it was. Those decisions belong to the team that knows your history.
It cannot read your results
A metanephrine level just above the reference range, or a small spot on an MRI, can mean very different things in different people. Many turn out to be nothing. What your specific result means is a question for the counsellor or specialist who ordered the test, not for a search engine.
Who this does not apply to
This page is written for people who carry a confirmed fault. Most people with high blood pressure or headaches do not have one of these tumours, and do not need this programme. If your tumour was removed and genetic testing found no fault, you will still have follow-up, but it is usually simpler and your own specialist will set it.
If keeping up with screening from a district has become hard, say so. A plan that fits your travel is better than one you abandon.Questions we are asked
Common questions about living with paraganglioma screening
How often will I need the blood or urine test?
For most carriers it is once a year, on a schedule your team confirms. It may be brought forward if you develop symptoms, plan a pregnancy or need an operation. After a tumour has been removed, the checks usually continue on the same yearly rhythm, because another tumour can appear elsewhere.
Why is MRI preferred to CT for routine scans?
CT uses X-rays, and radiation from repeated scans adds up over a lifetime. MRI uses a magnet instead. For people who start screening young and continue for decades, that difference is large enough that most teams choose MRI for routine checks and keep CT for specific questions.
Can I give the samples at a hospital near my home?
Sometimes. The blood or urine sample has to be collected and handled correctly and sent to a laboratory that runs the test regularly. Ask your team which local centres they trust. The scan is best read by radiologists who know what they are looking for, so many families travel for that part.
My result came back slightly high. Should I be worried?
Not straight away. Borderline results are common and can come from medicines, stress, caffeine or the way the sample was taken. The usual next step is a careful repeat. Ask the team who ordered the test to explain what your result means before reading anything into it.
Can I have children safely?
Many carriers do. An undetected tumour during pregnancy or delivery can be dangerous, so the usual advice is to be screened before trying to conceive and to tell your obstetrician early. Your team may add checks during the pregnancy. Each child has a one in two chance of inheriting the fault.
When should my children start being checked?
That depends on the gene. For some, testing the child for the family fault and starting screening in childhood is recommended, because tumours can appear young. For others it can wait. Your genetic counsellor will tell you which applies and at what age testing makes sense.
Will being a carrier affect my insurance or marriage?
India has no dedicated law on genetic discrimination in insurance, so raise this with your counsellor, ideally before testing relatives. Whether and when to tell a future spouse's family is a personal decision. A counsellor can help you think through how to have that conversation.
Do government schemes cover the screening?
Scheme cover under Aarogyasri or Ayushman Bharat usually applies to treatment of a diagnosed illness, so routine checks for a well carrier may not be included. Check before you book. Call the CION helpline and someone will tell you what your scheme or policy is likely to cover.
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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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.
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Sources
- GeneReviews (NCBI) — Hereditary Paraganglioma-Pheochromocytoma Syndromes
- MedlinePlus Genetics — Hereditary paraganglioma-pheochromocytoma
- National Cancer Institute — Pheochromocytoma and Paraganglioma Treatment (PDQ) - Patient Version
- 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
Biochemical screening: metanephrines explainedWhat the yearly blood or urine test measures and how to prepareImaging surveillance and which scan whenMRI, CT and nuclear scans, and when each is usedHead and neck paragangliomas and hearingThe silent tumours only a scan can findScan anxiety in a lifelong screening programmeWhen the waiting is harder than the test
Talk to us
Finding it hard to keep up with your screening?
Tell us your gene, your last tests and where you live. We will help you plan checks that fit your travel and your budget. One helpline serves every CION centre.