Medical Oncologist
CION Cancer Clinics
After a positive CDH1 result: your next steps, in order | CION Cancer Clinics
A positive CDH1 result is not an emergency and not a cancer diagnosis. It means your risk of a hard-to-see stomach cancer is raised and, for women, so is the risk of lobular breast cancer. Over the next few months a team will offer stomach checks, talk through preventive surgery, plan breast checks and help you tell your family. 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 happens after a positive CDH1 result?
- What options will you be offered?
- What usually happens, step by step
- What do the words you will hear mean?
- Planned checks and preventive surgery, compared
- What can this page not tell you?
- What do people assume after a positive result?
- Common questions after a positive CDH1 result
The short answer
What happens after a positive CDH1 result?
Nothing has to happen today. A positive result means you carry a fault that raises your risk of a hard-to-see stomach cancer and, for women, lobular breast cancer. Over the next few months you meet a team who plan stomach checks, talk through preventive surgery, arrange breast checks if you are a woman, and help you tell your family.
A result is not a diagnosis
Most carriers are well when they are told. The result describes risk, not a cancer you have now. That gives you time to learn, ask questions and decide at a pace that suits your life, your work and your family.
Why a specialist team matters
Early stomach cancer in CDH1 carriers can hide under a normal-looking lining. Finding it needs a careful camera test with many small samples, read by people used to looking for it. Surgery, if you choose it, is also best done by a team that performs it regularly. For families in a Telangana district, that can mean a few planned trips to the city each year, so ask early how visits can be grouped together.
You do not have to decide anything at the first appointment. Ask for a second conversation if you need one.Your choices
What options will you be offered?
There is more than one reasonable path. Most carriers combine several of these over time.
Planned stomach checks
A camera test of the stomach, usually once a year, with many small samples taken even where the lining looks normal. It can find early changes, but it can also miss them.
Often chosen by
- People not ready for surgery
- Those planning a pregnancy first
Preventive stomach removal
Removing the whole stomach removes most of the stomach cancer risk. It is the option most guidelines recommend for confirmed carriers, but it changes how you eat for life. Timing is always your decision.
Breast checks for women
Women carriers are offered breast MRI and sometimes mammograms from early adult life. Some consider preventive breast surgery. Men do not need extra breast checks for this gene.
Family and future plans
Relatives are offered testing for your exact fault. If you are planning children, ask about options that can lower the chance of passing the fault on.
Not sure whether this applies to you?
Ask an oncologistThe first months
What usually happens, step by step
-
The result is explained
A counsellor confirms the fault is clearly harmful, explains what it means for you, and answers the questions you have brought.
-
A first stomach check
A specialist camera test with many samples gives a starting picture. You are also tested for H. pylori, a common stomach infection, and treated if it is found.
-
Meeting the surgeon and dietitian
Even if you are not planning surgery, it helps to hear what it involves and how eating changes afterwards. Many people find this conversation less frightening than they expected.
-
A breast plan for women
The breast team sets out which scans you will have and how often. Bring any earlier breast reports.
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Telling the family
You receive a family letter to share with relatives who may want testing. You choose who receives it and when.
In the clinic
What do the words you will hear mean?
- Risk-reducing gastrectomy
- An operation to remove the whole stomach before cancer develops. The food pipe is joined to the small bowel.
- Surveillance endoscopy
- A planned camera test of the stomach through the mouth, repeated at set intervals to look for early change.
- Random biopsies
- Many tiny samples taken from normal-looking lining, because early CDH1 cancers are often invisible to the eye.
- Signet ring cells
- The cells seen under the microscope in diffuse stomach cancer, named after their ring-like shape.
- H. pylori
- A common stomach infection. Treating it removes one extra source of damage, though not the inherited risk.
- Multidisciplinary team
- Surgeons, gastroenterologists, breast doctors, dietitians and counsellors who plan your care together.
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Side by side
Planned checks and preventive surgery, compared
Planned stomach checks
Preventive stomach removal
Keeps the stomach and normal eating
Removes most of the stomach cancer risk
Can miss early cancer hidden under the lining
No stomach left to watch
Repeated for as long as you keep the stomach
A single operation, with lifelong diet changes
Leaves the surgery decision open
Vitamin injections and dietitian support for life
Being straight with you
What can this page not tell you?
It cannot tell you which option is right for you. That depends on your age, your health, the family pattern, your plans for children and what matters most to you. It is a decision made over several conversations, not from a web page. Our guide to weighing surgery, medicine and checks can help you prepare.
It cannot read your report
Some CDH1 changes clearly break the gene and some do not. A report that says likely pathogenic is usually treated like a clear fault, but the wording is worth checking before any surgery is planned. What your specific variant means is a question for the counsellor who ordered the test.
Who this does not apply to
If your result was a variant of uncertain significance, none of the steps above follow from it on its own. If a relative has the fault but you tested negative, you do not need these checks. If you already have stomach cancer, treatment is planned by your oncologist on the cancer itself, and tumour testing belongs under targeted therapy.
Evidence on the best timing of surgery is still growing. Ask how firm each recommendation is.Commonly believed
What do people assume after a positive result?
"A positive result means I already have stomach cancer."
It means your risk is raised. Most carriers are well when they find out. The checks and choices that follow exist because there is time to act.
"The surgery has to happen straight away."
Surgery is planned, not rushed. Many carriers have checks for a while first, finish a pregnancy, or wait for the right time at work. Your team will tell you if anything changes the timing.
"A clear camera test means I can stop worrying."
A normal result is reassuring, but early CDH1 cancers can hide beneath a normal lining. That is why checks are repeated and why surgery is still discussed.
"Nobody can live a normal life without a stomach."
People do live full lives after this operation. Eating changes to small, frequent meals, weight usually drops, and vitamin injections are needed for life. A dietitian helps you adjust.
Questions we are asked
Common questions after a positive CDH1 result
Do I need surgery straight away?
No. Preventive stomach removal is a planned operation, and the timing is your choice. Many carriers start with specialist camera checks while they think it through. Your team will discuss the right window for you, based on your age, health and the family pattern.
What if I do not want surgery at all?
That is a choice you are allowed to make. You will be offered regular camera checks with many samples, done by a specialist team. Checks can miss early change, so they are not the same as removal. Read our page on surveillance instead of surgery.
How often will I need a camera test?
Usually once a year for as long as you keep your stomach, though your team may suggest a different plan. Each test takes longer than a routine one because many small samples are taken. You will usually be sedated.
How will eating change after stomach removal?
You will eat small meals often rather than large ones. Most people lose weight and some feel unwell after sugary food. Vitamin B12 injections are needed for life. Recovery takes months, and a dietitian guides you through it.
Should my brothers, sisters and children be tested?
They should be offered testing for your exact fault. Each has a one in two chance of carrying it. Children are usually tested from their late teens. Your counsellor will give you a family letter to share with them.
I am planning a pregnancy. Does that change anything?
It often changes the timing of surgery, and it is worth raising early. Some women complete a pregnancy under close checks before surgery. Options to lower the chance of passing the fault to a child can also be discussed.
Do I have to tell my employer or insurer?
India has no dedicated law on genetic discrimination, and the position is not settled. Talk it through with your counsellor before sharing the result outside the family. Many people wait until they have a clear plan.
Does diet or lifestyle lower my risk?
Not smoking, limiting alcohol and treating H. pylori help your stomach in general. None of them removes the inherited risk. The real protection comes from specialist checks or preventive surgery, chosen with your team.
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) — Hereditary Diffuse Gastric Cancer
- MedlinePlus Genetics — Hereditary diffuse gastric cancer
- MedlinePlus Genetics — CDH1 gene
- 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.
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