Medical Oncologist
CION Cancer Clinics
Positive for an SDHx fault: the next steps | CION Cancer Clinics
A positive SDHx result means you carry a fault that raises the risk of certain tumours. It does not mean you have one. What follows is counselling, a first round of hormone tests and an MRI scan, a plan for regular checks, and testing for close relatives. This page walks through the first year, what each check is for, and what happens if something is found. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
NG
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
17+specialists on panel
15,000+patients treated
35+centres across Telangana & AP
4.8★ / 800+Google rating
On this page
- What happens after a positive SDHx result?
- What does the first round of checks include?
- What does the first year after the result look like?
- What do the terms in your follow-up mean?
- What if the first checks find something?
- What do people get wrong after a positive result?
- What this page cannot tell you
- Common questions after a positive SDHx result
The short answer
What happens after a positive SDHx result?
A positive result means you carry a fault that raises the risk of certain tumours. It does not mean you have one. The next steps are a counselling visit to explain the result, baseline hormone tests and a scan to check nothing is already there, a plan for regular checks, and testing for relatives.
If you have already had a tumour
The result explains why it happened and shapes your follow-up. You will usually be checked for life, because a new tumour can appear elsewhere and a treated one can come back. Your surgeon and oncologist will plan around the gene involved.
If you are a well relative
You were tested because the fault was found in someone else. Most of what follows is watching, not treating. The aim is to find any tumour while it is small, before it causes symptoms or spreads, when it is easier to remove. Most carriers go through years of checks that find nothing, and that is a good outcome, not wasted effort. Life, work, marriage and travel carry on as before.
Take a few days before deciding anything. Very little after a positive result needs to happen urgently.The first checks
What does the first round of checks include?
These set a baseline. Later results are compared with them, so small changes can be spotted early.
Hormone blood or urine tests
These measure metanephrines, the breakdown products of adrenaline-like hormones. A raised level suggests a tumour is releasing hormones somewhere in the body. The blood test is usually taken after lying down quietly for a while, because stress and movement can raise the level.
A baseline MRI scan
An MRI of the head and neck, chest, abdomen and pelvis, or a single whole-body MRI. It uses no radiation, which matters when scans will be repeated for years. It takes a while and is noisy, but it is not painful. Children sometimes need a mild sedative to lie still.
Blood pressure and a symptom review
A doctor asks about attacks of headache, sweating or a racing heart, and checks your blood pressure. Simple, but it catches things scans can miss between visits.
Mention it if you have had
- Sudden attacks of pounding heartbeat
- A neck lump or ringing in one ear
A family plan
The counsellor lists which relatives should be offered a test and helps you tell them. This is often the step that protects the most people. Relatives who live in the districts can usually give their sample closer to home.
Not sure whether this applies to you?
Ask an oncologistThe first year
What does the first year after the result look like?
-
The result is explained
A counsellor goes through the report with you, in Telugu if you prefer, and answers the questions your family will ask.
-
Baseline tests are booked
Hormone tests and a scan are arranged. Some medicines can upset the hormone results, so tell the team everything you take.
-
The results are reviewed
Most well carriers hear that nothing was found. If something is seen, more scans and a specialist opinion follow before any decision.
-
A long-term schedule is agreed
Usually hormone tests about once a year and an MRI every few years, adjusted for your gene, your age and what has been found so far.
-
Relatives are offered testing
Brothers, sisters and children are tested for your exact fault. Those who do not carry it need no special checks.
Words you will hear
What do the terms in your follow-up mean?
- Surveillance
- Planned checks in a person without symptoms, to find a tumour early. It watches for tumours but does not prevent them.
- Baseline
- Your first set of results. Later tests are compared with it.
- Plasma metanephrines
- A blood test for adrenaline-like hormone breakdown products. It is the main hormone check for carriers.
- Watch and wait
- Keeping a small, slow tumour under regular scans instead of operating straight away. It is sometimes chosen for head and neck tumours.
- DOTATATE PET-CT
- A special scan that lights up these tumours. It is used to look closely at a suspected tumour, not for routine checks.
- Endocrinologist
- A hormone specialist. They often lead the checks and prepare you if surgery is needed.
Leave a number, we will call you
One field. No form to fill in, and no charge for the call.
Side by side
What if the first checks find something?
Something is found
Nothing is found
More detailed scans confirm what it is
Regular checks continue on schedule
A team plans surgery, radiation or watching
No treatment is needed
Hormone-blocking tablets may come before surgery
Everyday life carries on as usual
Follow-up becomes closer after treatment
Report new symptoms between visits
Commonly believed
What do people get wrong after a positive result?
"A positive result means I need an operation now."
There is nothing to remove unless a tumour is found. For well carriers, the plan is watching. No surgery is done to prevent these tumours in advance.
"If I feel fine, I can skip the scans."
Many tumours cause no symptoms until they are large, and head and neck tumours often release no hormones. Planned scans are how they are found while small.
"My other doctors do not need to know."
They do. An undiscovered hormone-releasing tumour can cause a dangerous rise in blood pressure during an operation, anaesthesia or childbirth. Always mention the result.
"A CT scan every year is the safest plan."
Repeated CT adds radiation over a lifetime. MRI gives the information needed without it, which is why most plans for carriers prefer it.
Being straight with you
What this page cannot tell you
It cannot set your schedule. When checks start, how often they repeat and which scans are used depend on your gene, your age, your own history and what the first tests show. Your team agrees that with you, and reviews it as you get older or if anything new is found.
It cannot interpret your report
What your specific variant means is a question for the counsellor who ordered the test. Some reports list a variant of uncertain significance, a change the lab cannot yet classify. That is not a positive result and should not start this plan on its own.
Who this does not apply to
If a change was found only inside a tumour and a blood test has not confirmed it, relatives are not yet known to be at risk. Tumour testing belongs under targeted therapy. Ask whether a blood test is needed before telling the family.
Keep a copy of your report with your other medical papers. You will be asked for it many times.Questions we are asked
Common questions after a positive SDHx result
Do I need to see a doctor urgently?
Usually not, if you feel well. Book the counselling visit and baseline checks in the coming weeks. The exception is sudden severe headache with a pounding heart and sweating, which needs same-day medical attention.
Which doctor will look after me?
Often a team. A genetic counsellor explains the result, an endocrinologist or oncologist leads the checks, and a surgeon joins if a tumour is found. One person should coordinate, so ask who that is.
Can medicines affect my hormone test?
Yes. Some antidepressants, blood pressure tablets and decongestants can push results up and cause false alarms. Bring a list of everything you take, including over-the-counter and herbal products, so the result can be read properly.
Is surgery the only treatment if a tumour is found?
No. Many tumours are removed, but small head and neck tumours are sometimes watched or treated with focused radiotherapy. The choice depends on size, place, hormones and your wishes. The team explains each option.
Can I get pregnant safely?
Many carriers have healthy pregnancies. Have hormone tests before trying, and tell your obstetrician about the result. An undiscovered hormone-releasing tumour is the main risk, and checking beforehand deals with it.
Will this affect my job or insurance?
India has no specific law against genetic discrimination. Many carriers keep the result within the family and their doctors. Read insurance forms carefully and answer honestly. Your counsellor can talk through what to disclose.
How long will I need checks?
For most carriers, for life. The fault stays in every cell, and tumours can appear at any age. The schedule may change over time, but it rarely stops completely.
Are the checks covered by Aarogyasri or insurance?
Cover for planned checks in a well person is patchy. Treatment of a tumour, once found, is more often covered. Ask the helpline to check your own scheme or policy before booking scans.
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
Medical Oncologist
Want a specific doctor for your case? Mention them when booking.
Book Free ConsultationBook an appointment with our specialist
Share your name and number — we'll call you back within 30 minutes to schedule your consultation.
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
Talk to us
Just received a positive SDHx result?
Tell us what the report says and whether you have had a tumour. We will help you arrange counselling and the first checks at a centre near you. One helpline serves every CION centre.