Medical Oncologist
CION Cancer Clinics
Surveillance for FH carriers: what is checked, and when | CION Cancer Clinics
If you carry an FH fault, the core of your plan is a kidney MRI every year, usually starting in childhood from around the age of eight to ten. Women add a yearly gynaecology review, and everyone has their skin checked regularly. This page sets out the schedule across a lifetime, the symptoms that should not wait, and what surveillance can and cannot do. 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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The short answer
Which checks does an FH carrier need?
Three checks make up the plan. A kidney MRI every year is the one that matters most. Women add a gynaecology review every year, usually from early adult life. A dermatologist examines the skin every year or two. Expert groups broadly agree on this schedule, though details vary a little between countries.
Why the kidneys come first
The kidney tumour linked to FH can spread while it is still small, and it often causes no symptoms early on. A yearly scan is the only reliable way to find it at a stage when surgery works best. Skin bumps and fibroids tend to announce themselves. A kidney tumour does not.
Why MRI rather than ultrasound
Ultrasound is cheap and easy to find across Telangana, but it can miss small, flat tumours of the kind seen in FH. A contrast MRI gives a much clearer picture. Where MRI is not possible, a CT scan may be used instead. Ultrasound alone is not considered enough.
Scans only help if they happen. A date written in your folder is worth more than a perfect plan nobody follows.Check by check
What does each check involve?
Each check has its own specialist. Ask for all of them to be listed on one written schedule.
Kidney MRI
A scan of both kidneys, usually with a contrast injection into a vein. It takes under an hour. A radiologist compares it with your earlier scans and looks for anything new.
Bring with you
- Previous MRI reports and discs
- Your latest kidney function blood test
- Your FH result, so the scan is read with it in mind
Gynaecology review
A consultation and usually a pelvic ultrasound to track fibroids. It is the moment to raise heavy periods, pain or plans for pregnancy, so fibroids are managed before they become an emergency.
Skin examination
A dermatologist checks for new or painful bumps and can remove troublesome ones. Any bump that changes quickly, or looks different from the others, is looked at more closely.
What is not routine
Scans for adrenal tumours, and screening for other cancers beyond the usual advice for your age, are not part of the standard FH plan. Your team may add them if your family history points that way.
Not sure whether this applies to you?
Ask an oncologistAcross a lifetime
How does the schedule change as you get older?
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From around eight to ten
Yearly kidney MRI begins. Many centres time the first scan so a child is old enough to lie still without sedation.
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Teenage years
Yearly kidney MRI continues. Skin checks start if bumps appear, and young people are gradually brought into their own appointments.
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Early adulthood
Women add a yearly gynaecology review. This is a good time to discuss fibroids, fertility and family plans before decisions are forced.
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Through adult life
Kidney, gynaecology and skin checks carry on. After a hysterectomy the gynaecology review may stop, but the kidney scan does not.
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After kidney surgery
Scanning continues on whatever kidney tissue remains. Your surgeon sets the follow-up plan, which may be more frequent for a while before returning to the yearly routine.
On your scan report
What do the words on a kidney scan report mean?
- Contrast
- A dye injected into a vein that makes blood vessels and tumours show up more clearly on the scan.
- Lesion
- Any area that looks different from normal kidney. Most lesions are not cancer, but in FH each one is reviewed carefully.
- Simple cyst
- A fluid-filled bubble with a thin wall. Common and harmless in most people.
- Complex cyst
- A cyst with thick walls, inner walls or solid parts. In FH these need expert review, because FH tumours can look like cysts.
- Indeterminate
- The radiologist cannot say what it is from this scan alone. More imaging or a specialist review usually follows quickly.
- Interval scan
- A scan brought forward, earlier than the usual yearly date, to check on something.
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Symptoms that should not wait for the next scan
If you carry an FH fault and notice blood in your urine, a new pain in your side or back that does not settle, or a lump in your abdomen, contact your doctor the same day and mention your FH result. Very heavy vaginal bleeding that soaks through protection within an hour, or makes you feel faint, needs the nearest emergency department straight away.
Being straight with you
What this page cannot tell you
It cannot set your own schedule. Your age, your scan history, any past surgery and your family's pattern all shape the plan. Your genetic counsellor and oncologist write that plan together. This page describes the usual pattern only.
What surveillance can and cannot do
Surveillance finds problems early. It does not prevent them. A scan can be clear one year and show a small tumour the next, and that is the system working, not failing. Studies of how much FH surveillance improves survival are still small, but experts agree that finding tumours while they are small is better.
Who this does not apply to
Relatives who tested negative for the family's known fault do not need this schedule. Neither do people with fibroids and no FH result. If your result is a variant of uncertain significance, your plan is based on your family history instead.
Commonly believed
Four things carriers believe about scans, and what is true
"I feel fine, so I can skip this year's scan."
FH kidney tumours usually cause no symptoms while they are small. Feeling well tells you nothing about your kidneys. The yearly scan is what lets you feel confident.
"An ultrasound at my local centre is just as good."
Ultrasound can miss the small, flat tumours seen in FH. It can be a useful extra, but contrast MRI is the recommended scan. It is worth the trip to a centre that offers it.
"Having an MRI every year will expose me to radiation."
MRI uses magnets and radio waves, not X-rays, so there is no radiation. The contrast injection is generally safe, and your kidney function is checked before it is given.
"After my hysterectomy, I no longer need checks."
Removing the womb ends the gynaecology review for most women. The kidney MRI continues every year for life.
Questions we are asked
Common questions about FH surveillance
At what age should kidney scans start?
Usually from around the age of eight to ten, because kidney tumours have occasionally been found in children. Some families start a little earlier or later depending on their history. Your counsellor will agree a starting point with you and your child.
How often is the kidney MRI done?
Once a year, for life, in most plans. A scan may be brought forward if something needs a closer look. After kidney surgery your surgeon may scan more often for a while before returning you to the yearly routine.
Does my child need sedation for the MRI?
Some younger children do, and some manage without it after preparation and with a parent nearby. The scan is noisy but does not hurt. Ask the scan centre about child-friendly preparation and about how the contrast injection is given.
Can I have the scans outside Hyderabad?
Yes, if the centre offers contrast MRI and the report is read with your FH result in mind. Keep every report and disc so the next radiologist can compare. Many families from the districts travel once a year and combine all three checks in one visit.
What if my scan shows a cyst?
Simple cysts are common and usually harmless. In FH, any cyst with thick walls or solid parts is reviewed by a specialist, because FH tumours can look like cysts. What your specific scan means is a question for your oncologist or urologist.
What if I am pregnant when a scan is due?
Tell your team straight away. MRI without contrast is generally considered acceptable in pregnancy, and contrast is usually avoided. The timing can often be adjusted a little. Your obstetrician and oncologist will agree the plan together.
Are the checks covered by Aarogyasri or Ayushman Bharat?
Cover for screening scans in people without cancer varies by scheme and by hospital, and is often limited. Ask the scheme desk before booking. Private insurance may cover the scans once a condition is documented, but check the policy wording first.
Who keeps track of my schedule?
You should hold a written plan, and your oncologist or genetics clinic should keep a copy. Set a phone reminder for each yearly scan. Call the CION helpline if you have lost track of when your next check is due, and someone will help you rebook.
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
- National Cancer Institute — Genetics of Kidney Cancer (Renal Cell Cancer) (PDQ)
- MedlinePlus Genetics — Hereditary leiomyomatosis and renal cell cancer
- National Cancer Institute — Genetic Testing for Inherited Cancer Susceptibility Syndromes
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.
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Need a surveillance plan you can actually follow?
Bring your FH report and any earlier scans, and we will help you set out a written schedule of checks. One helpline serves every CION centre.