Medical Oncologist
CION Cancer Clinics
FH positive: what happens after the result | CION Cancer Clinics
A positive FH result means you carry an inherited fault that raises the chance of an aggressive kidney cancer, along with skin bumps and early fibroids. It does not mean you have cancer. The next steps are a counselling appointment, a first kidney MRI, skin and womb checks, and a plan for telling relatives. This page walks through each one. 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 does a positive FH result mean for me right now?
- Which parts of your life does the result touch?
- What happens, step by step, after a positive result?
- What do the words in an FH results letter mean?
- What changes after the result, and what stays the same?
- What this page cannot tell you
- Four worries after a positive result, and what is true
- Common questions after a positive FH result
The short answer
What does a positive FH result mean for me right now?
It means a pathogenic variant, a change known to stop the gene working, was found in your blood sample. You were born with it. It does not mean you have cancer today, and it does not mean you will get cancer. It means you now qualify for a schedule of checks that most people never need.
The first priority is your kidneys
The kidney tumour linked to FH can spread while it is still small. So the most important early step is a good-quality kidney MRI, if you have not had one recently. Everything else on this page can be arranged over the following weeks. The kidney scan should not wait for them.
The result is also information for your family
Your parents, brothers, sisters and children may carry the same fault. Each of them can now have a quick, targeted test for exactly the change found in you. That is often the most useful thing a positive result achieves.
A positive result feels heavy on the day. Most carriers go on to live ordinary lives around a routine of yearly checks.Four areas to plan
Which parts of your life does the result touch?
Four areas need a plan. None of them has to be settled in the first week except the kidney scan.
Kidneys
A yearly kidney MRI for life, read by a radiologist who knows about FH. Any new finding is reviewed quickly by a urologist or oncologist.
Ask for
- Contrast MRI rather than ultrasound alone
- A written date for the next scan
- Copies of every report
Womb
Women are referred to a gynaecologist for a yearly review. Fibroids are managed as they would be for anyone, with extra thought about timing, fertility and keeping the womb where possible.
Skin
A dermatologist examines the skin, usually every year or two. Painful bumps can be removed or eased with medicines. New bumps matter mainly as a sign, not as a danger.
Family
Your counsellor helps you prepare a short letter or message for relatives explaining the result and offering them a test. You decide who to tell and when.
Not sure whether this applies to you?
Ask an oncologistThe first few months
What happens, step by step, after a positive result?
The results appointment
A genetic counsellor explains the result, updates your family tree and answers questions. Bring a relative if you can, because it is a lot to take in at once.
A first kidney MRI
If you have not had a recent scan, one is booked soon. This sets a baseline, a first picture that every later scan is compared against.
Skin and gynaecology reviews
These are arranged over the following weeks. Women already being treated for fibroids should tell their gynaecologist about the result straight away.
A lifelong schedule
Your team writes down which checks happen when. Keep this in one folder with your reports, especially if you travel to Hyderabad from a district for your scans.
In your results letter
What do the words in an FH results letter mean?
- Positive
- A pathogenic or likely pathogenic variant was found. Both are acted on in the same way.
- Heterozygous
- One copy of the gene carries the change and the other copy is normal. This is how HLRCC usually appears on a report.
- Index case
- The first person in the family found to carry the fault. Here, that is you.
- Cascade testing
- Offering a test to relatives, one branch of the family at a time, once the fault is known.
- Baseline scan
- The first scan in a series. Later scans are compared against it to spot anything new.
- Surveillance
- Regular checks in people who feel well, to find a problem early while it is easier to treat.
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Side by side
What changes after the result, and what stays the same?
What changes
What does not change
You start yearly kidney MRI scans
You do not have cancer because of the result
Fibroid surgery is planned with fertility in mind
Food, work and exercise continue as before
Relatives are offered a targeted test
Nobody in the family has to be tested
Any kidney finding is acted on quickly
Your other routine screening continues as normal
Being straight with you
What this page cannot tell you
It cannot tell you what your particular variant means for you. What your specific variant means is a question for the counsellor who ordered the test. Some FH variants are well known. Others have been seen in only a handful of families, and less is known about them.
If your result says uncertain significance
A variant of uncertain significance, or VUS, is not a positive result, and the steps on this page may not apply. Your plan is then based on your personal and family history. The variant is reviewed as evidence grows.
If only your tumour was tested
A tumour report that says FH-deficient is not the same as an inherited result. Tumour testing sits with our targeted therapy team. A separate blood test settles whether you were born with the fault. Relatives who tested negative for your family's known fault do not need any of these checks.
Commonly believed
Four worries after a positive result, and what is true
"I will need my kidneys taken out to be safe."
No. Healthy kidneys are not removed to prevent cancer in FH. They are watched closely with scans, and surgery is planned only around a tumour that actually appears.
"My children must be tested straight away."
Children are usually offered testing from around the age of eight to ten, when kidney scans would begin. There is no need to test a baby, and your counsellor will help you choose the timing.
"This result will spoil my daughter's marriage prospects."
A result is private medical information, and your family decides who hears it. Many families find a frank talk with a counsellor helps them decide when and how to share it. A carrier on a scan schedule has a risk that is known and being managed.
"It is my fault for passing it on."
Nobody chooses the genes they pass on. The fault was in your family long before you. What you have done is give your children the chance to be checked early.
Questions we are asked
Common questions after a positive FH result
How soon should I have my first kidney scan?
Soon, if you have not had a good-quality MRI recently. There is no need to panic, but it should not be left for months. Your counsellor or oncologist will arrange it and tell you when the next one is due.
Is an ultrasound enough?
Usually not on its own. Ultrasound can miss small or flat kidney tumours of the kind seen in FH. A contrast MRI is the preferred scan. If MRI is not possible for you, your doctor will discuss alternatives such as a CT scan.
Can I still plan a pregnancy?
Many carriers have children. Talk to your counsellor about fibroids and fertility, and about whether your partner should be tested too. If both of you carry an FH fault, a child could inherit two faulty copies, which causes a severe illness from infancy.
Do I need to change my diet or lifestyle?
No special diet is known to lower FH risk. Not smoking, keeping a healthy weight and controlling blood pressure are good for kidney health in general. They are sensible habits, but they do not replace the yearly scan.
Does insurance or Aarogyasri cover the scans?
It depends on the policy or scheme, and on whether the scans count as screening or as follow-up of a known condition. Ask the insurer or scheme desk before booking. India has no specific law protecting genetic results in insurance, so discuss timing with your counsellor.
How do I tell my brothers and sisters?
Many people find a short letter from the counsellor easiest, because it explains the result in neutral words. Relatives can take it to their own doctor. Ask whether counselling in Telugu is available if that suits older relatives better.
Will I need surgery?
Only if a scan finds something that needs it, or for fibroids that cause problems. Carriers are not offered surgery to remove healthy kidneys. Many carriers go years between findings, and some never need an operation at all.
Who do I contact with questions later?
Your genetic counsellor for questions about the result and your family, and your oncologist or urologist for anything a scan shows. Keep all your reports together. Call the CION helpline if you are not sure who to ask, and someone will direct you.
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
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Sources
- GeneReviews (NCBI) — FH Tumor Predisposition Syndrome
- MedlinePlus Genetics — Hereditary leiomyomatosis and renal cell cancer
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- NHS — Predictive genetic tests for cancer risk genes
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
Surveillance for FH carriersThe full schedule of checks, by ageTesting the family for FHWhich relatives to offer a test, and in what orderFH mutation: which cancers and what riskWhat the result does and does not raiseThe FH gene: what it does and why it mattersThe biology behind the result, in plain words
Talk to us
Just received a positive FH result?
Tell us what your report says and where you live. We will help you arrange counselling and a first kidney scan without long delays. One helpline serves every CION centre.