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Found to carry a MAX or TMEM127 fault: what happens next | CION Cancer Clinics
A positive MAX or TMEM127 result means you carry a fault that raises the chance of a phaeochromocytoma, a tumour of the adrenal gland that makes stress hormones. The next steps are a meeting with a genetic counsellor, baseline hormone tests and a scan, and a plan for your relatives. This page walks through those steps in order and explains what each one is for. 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
- I have tested positive for MAX or TMEM127. What happens now?
- Which specialists will be involved in your care?
- What are the first steps after a positive result?
- The words you will meet, in plain language
- Four things families tell us, and what is actually true
- What this page cannot tell you
- Common questions after a positive result
The short answer
I have tested positive for MAX or TMEM127. What happens now?
In most cases nothing needs to happen today. The next steps are a meeting with a genetic counsellor, a baseline set of hormone tests and a scan, and a plan for your relatives. None of these is an emergency unless you have symptoms right now.
If you have already had a phaeochromocytoma
The result explains why the tumour formed. The plan now turns to the other adrenal gland, which can grow a new tumour, and to making sure the first one has not come back. Your follow-up will be longer and closer than it would be for someone with no inherited fault.
If you were tested because a relative carries it
You are a carrier, not a patient. The first job is to check that no tumour is already present. If the baseline tests are clear, you move on to a regular checking plan. Many carriers of both genes never develop a tumour at all.
If you live outside Hyderabad
You do not need to move your life to the city. The blood or urine test can often be collected at a laboratory near home and the report sent on. The scan and the specialist review are the parts that may need a trip. Ask for both to be booked on the same day so one journey covers them.
A positive result is a reason to be watched. It is not a diagnosis.Who you will see
Which specialists will be involved in your care?
You will not need all of them at once. Most carriers see two or three people in the first year.
Genetic counsellor
Confirms what the result means, explains the gene, and helps you work out which relatives to tell. This is also the person to ask about children and family planning. Counselling can be given in Telugu, and family members are welcome to sit in.
Endocrinologist
The hormone specialist who runs your long-term checks. They order the blood or urine tests and decide how often you need a scan.
What they look at
- Stress hormone breakdown products
- Blood pressure over time
- Any new symptoms you report
Radiologist
Reads your CT or MRI scans of the adrenal glands and belly. If a tumour is suspected, a special PET scan may be used to show exactly where it is. Keep every scan on a disc or drive, because the next reading is compared with the last.
Surgeon, only if needed
If a tumour is found, an adrenal surgeon removes it. When both glands are at risk, surgeons may try to leave healthy adrenal tissue behind so you do not need lifelong hormone tablets.
Not sure whether this applies to you?
Ask an oncologistIn order
What are the first steps after a positive result?
A results appointment
The counsellor checks that the change is classed as disease-causing, not uncertain. Only a confirmed fault leads to the steps below. Bring your report and any earlier scans.
Baseline hormone tests
A blood or urine test for metanephrines shows whether a tumour is making stress hormones. Some medicines can upset the result, so you may be asked to pause them first.
A baseline scan
A CT or MRI of the belly looks at both adrenal glands. MRI is often preferred for repeat checks because it uses no radiation.
A written plan
Your endocrinologist sets how often the tests repeat. For most carriers that means a yearly hormone test and scans at longer gaps, adjusted to your gene and history.
Telling your relatives
Parents, brothers, sisters and children can each be tested for your exact fault. That test is quicker and cheaper than yours was.
In your plan
The words you will meet, in plain language
- Metanephrines
- Breakdown products of adrenaline and noradrenaline. A raised level in blood or urine suggests a tumour is making hormones.
- Pathogenic or likely pathogenic
- The laboratory is confident the change causes disease. Only these two classes lead to screening and family testing.
- Variant of uncertain significance
- A change the laboratory cannot yet classify. It should not change your care or lead to testing of relatives.
- Cortical-sparing surgery
- An operation that removes the tumour but keeps part of the adrenal gland working, to avoid lifelong steroid tablets.
- Functional imaging
- A scan, usually a PET scan, that lights up tumour cells by what they do rather than by their shape.
- Cascade testing
- Testing relatives one by one for the fault already found in the family, starting with the closest.
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One thing that cannot wait
A sudden, severe headache with a pounding heart, heavy sweating, chest pain or a feeling of panic can mean a tumour is releasing a burst of hormones. Go to the nearest emergency department the same day and say you carry a MAX or TMEM127 fault. Before any operation, scan with contrast or pregnancy, tell the doctor about your result first, because an unknown tumour can cause a dangerous spike in blood pressure.
Commonly believed
Four things families tell us, and what is actually true
"A positive result means surgery straight away."
Surgery is only for a tumour that has been found. A carrier with clear tests is watched, not operated on. Nobody removes a healthy adrenal gland because of a gene result.
"If my first scan is clear, I am safe for life."
A clear scan means there is no tumour now. The fault is still there, so checks repeat. The gap between them depends on your gene and your history.
"My children are too young to worry about this."
Tumours in young children are rare with these genes, so testing can often wait. Your counsellor will tell you when testing a child makes sense for your family.
"We should keep this quiet until the marriage is settled."
Relatives cannot protect themselves from a risk nobody has told them about. A counsellor can help you plan what to say and when, and can write a letter you share with family.
Being straight with you
What this page cannot tell you
It cannot set your personal schedule. How often you are tested depends on which gene you carry, whether you have had a tumour, where it was and what it showed. What your specific variant means is a question for the counsellor who ordered the test.
The evidence is still limited
MAX and TMEM127 are rare, and the studies behind them are small. There is no single guideline written for each gene alone. Most specialists borrow from the wider advice for inherited phaeochromocytoma and adjust it. That is reasonable practice, but it means two good doctors may suggest slightly different plans.
Who this does not apply to
This page is not for someone whose report says variant of uncertain significance. That result should not trigger scans or family testing. It is also not about a change found only in tumour tissue, which is covered on our targeted therapy pages and is not passed on to children.
Keep a copy of your report where your family can find it. Relatives will need it for their own testing.Questions we are asked
Common questions after a positive result
How soon do I need to see a doctor?
If you feel well, within the next few weeks is usually fine. Book the results appointment and the baseline tests without long delay. If you have bouts of headache, sweating and a racing heart, be seen sooner.
Do I need a scan every year for life?
Not always. Hormone tests are usually yearly, while scans are often spaced further apart. The plan is set by your endocrinologist and may change as you get older or if a result changes.
Which medicines can affect the hormone test?
Some blood pressure tablets, antidepressants and decongestants can raise the result falsely. Do not stop anything on your own. Tell the doctor ordering the test everything you take, and they will advise what to pause.
Can I get pregnant if I carry one of these faults?
Yes. Tell your obstetrician early, and ask for a hormone check before or early in pregnancy. An unknown tumour during labour can be dangerous, so it is worth ruling one out first.
Who in my family should be tested first?
Usually your parents, brothers, sisters and adult children. If a parent is alive, testing them shows which side of the family the fault came from, and which cousins, aunts and uncles to tell next.
Will I need both adrenal glands removed?
Not unless tumours are found in both. Even then, surgeons often try to leave some healthy adrenal tissue. Losing both glands completely means lifelong steroid tablets, so this is weighed carefully.
Does this affect my insurance?
India has no dedicated law on genetic discrimination in insurance. Existing policies are usually not affected, but new cover can be harder. Ask your counsellor about this, ideally before relatives take their own tests.
Where can I get follow-up in Hyderabad or nearby?
You need an endocrinologist and access to MRI or CT. Both are available in Hyderabad and in larger district towns. Call the CION helpline and we will help you find the right clinic for your checks.
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
- NHS — Phaeochromocytoma
- 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
The MAX and TMEM127 genes explainedWhat the two genes do, before the next stepsTesting the family for MAX and TMEM127Who to tell first and how their test worksBiochemical screening: metanephrines explainedHow the yearly hormone test worksImaging surveillance and which scan whenCT, MRI or PET, and why
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Not sure what to do with your result?
Bring your report and we will help you set out the tests you need and the relatives who should be told. One helpline serves every CION centre.