Medical Oncologist
CION Cancer Clinics
Surveillance for CDH1 carriers: which checks, and when | CION Cancer Clinics
A CDH1 carrier's plan covers the stomach and, for women, the breasts. The stomach is either removed as a preventive step or watched with a careful specialist endoscopy once a year. Women also have breast MRI once a year from around thirty. This page explains each check, how the plan changes over the years, and which symptoms cannot wait. 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
The short answer
What checks does a CDH1 carrier need?
A CDH1 carrier's plan covers two organs: the stomach and, for women, the breasts. The stomach is either removed as a preventive step or watched with a careful endoscopy once a year. Women also have breast MRI once a year, usually from around the age of thirty.
Why the stomach plan is unusual
The stomach cancer linked to CDH1 is called diffuse gastric cancer. It spreads under the lining in thin sheets rather than forming a lump, so early spots can hide beneath a surface that looks normal. That is why many experts advise removing the stomach, and why surveillance, when chosen, has to be done very thoroughly.
Why a written plan matters
A CDH1 schedule involves several teams: genetics, endoscopy, breast imaging and, for some, surgery and nutrition. Without a single written plan, appointments slip and results sit in different files. Ask for one document that sets out every check, how often, and who arranges it.
Surveillance is a way of finding cancer early. It does not stop cancer from starting.Organ by organ
What does a CDH1 surveillance plan include?
Not every carrier needs every part. Your family history and your choices about surgery decide which apply.
The stomach, if it has not been removed
A specialist endoscopy once a year, at a centre experienced with CDH1. It takes longer than an ordinary endoscopy and includes many small tissue samples from across the stomach.
A good surveillance endoscopy
- Is unhurried, with the stomach fully inflated
- Takes samples from every region of the lining
- Also samples anything that looks unusual
The breasts, for women
CDH1 raises the chance of lobular breast cancer, which can be hard to see on a mammogram. Breast MRI once a year is usually advised from around the age of thirty, with mammograms added later.
After the stomach is removed
Stomach checks stop, but follow-up does not. You will need regular vitamin B12 injections for life, blood tests for iron, calcium and vitamin D, and help from a dietitian with weight and eating.
The bowel and other organs
Bowel checks are usually added only when bowel cancer appears in the family. Men do not need extra breast checks for this gene. Their plan is the stomach, and the same family testing.
Not sure whether this applies to you?
Ask an oncologist
!
One thing that cannot wait
If you vomit blood, or pass black, sticky stools, go to the nearest emergency department the same day and tell them you carry a CDH1 fault. Do not wait for your next endoscopy. Food that keeps sticking when you swallow, vomiting that does not settle, or weight falling without trying also need a doctor within days, not at your next routine visit.
Over the years
How does the plan change as you get older?
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Late teens and early adulthood
Testing for a known family fault is usually not offered before the late teens. Once a carrier is confirmed, the first specialist endoscopy is arranged and the conversation about the stomach begins.
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Deciding about the stomach
Many carriers are advised to consider removing the stomach in early adult life. Others choose to be watched, often while completing a family. Either way, endoscopy continues once a year until surgery.
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Breast checks begin for women
From around the age of thirty, women start breast MRI once a year. Mammograms are usually added later. Some women also discuss preventive breast surgery.
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Life after stomach surgery
Stomach checks end. Nutrition follow-up takes their place, with vitamin injections, blood tests and weight checks for life.
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A yearly review throughout
Your genetics team reviews the plan once a year. It changes as relatives are tested, as new cancers appear in the family and as guidance is updated.
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On your plan
The words you will meet, in plain language
- Diffuse gastric cancer
- A stomach cancer that spreads in thin sheets under the lining rather than forming a lump. It is the stomach cancer linked to CDH1.
- Surveillance endoscopy
- A thin camera passed through the mouth to look inside the stomach, done slowly and with many tissue samples.
- Biopsy
- A tiny piece of tissue taken to be examined under a microscope.
- Total gastrectomy
- An operation to remove the whole stomach. The food pipe is joined directly to the small bowel.
- Lobular breast cancer
- A type of breast cancer that grows in lines rather than lumps, which is why MRI is preferred for screening.
- Signet ring cells
- The cancer cells that pathologists look for on the stomach samples. Finding them is discussed with you in detail.
Commonly believed
Four things carriers tell us, and what is actually true
"My endoscopy was clear, so I do not have cancer."
A clear endoscopy is reassuring, but it cannot rule cancer out. The samples cover only a small part of the stomach. That is why checks continue every year and why surgery is still discussed.
"Any endoscopy near home will do."
A routine endoscopy is not enough for CDH1. The test needs to be slow and thorough, with many samples, at a centre that knows the gene. It may be worth travelling for.
"Once my stomach is out, I no longer need follow-up."
Stomach checks stop, but nutrition follow-up is for life. Women also continue breast screening, because surgery on the stomach does not change breast risk.
"Men with CDH1 only need to worry about passing it on."
Men carry the same stomach risk as women and need the same stomach plan. What they do not need is extra breast screening.
Being straight with you
What this page cannot tell you
It cannot give you your own schedule. Your plan depends on your age, who in the family had stomach or breast cancer, and what you decide about surgery. A genetic counsellor and the specialist teams draw that up with you.
It cannot interpret your result or your biopsies
What your specific variant means is a question for the counsellor who ordered the test. What a biopsy result means is for the team that took it. Neither should be decided from a search online.
It cannot weigh surgery for you
Removing the stomach is a major, lasting change to how you eat. It is one option among several, and it is covered in detail elsewhere on the site. The choice between surgery and surveillance belongs to you.
Who this does not apply to
This page is for people with a confirmed pathogenic CDH1 result. If your report says variant of uncertain significance, this schedule does not apply. Families from the districts may need to travel for specialist endoscopy, so plan the yearly visit early and ask what your insurance or scheme will cover.
Questions we are asked
Common questions about CDH1 surveillance
How often do I need an endoscopy?
Usually once a year, for as long as you keep your stomach. Your team may bring a check forward if a sample shows something unusual or if you develop symptoms. The endoscopy should be done at a centre experienced with CDH1.
Is the surveillance endoscopy different from a normal one?
Yes. It takes longer, the stomach is carefully inflated and cleaned, and many small samples are taken from across the lining. You are usually sedated. Ask how many samples were taken, as this is one sign of a thorough test.
Why MRI rather than a mammogram for my breasts?
Lobular breast cancer grows in thin lines and can be hard to see on a mammogram, especially in younger, denser breasts. MRI shows it more clearly. Mammograms are usually added as you get older.
Can I delay stomach surgery and just have endoscopies?
Yes, many carriers do, especially while planning a family. It is a recognised choice. Your team will explain that endoscopy can miss early spots, so the decision about surgery is revisited at each yearly review.
When should my children be tested?
Usually from the late teens, when a result could change their care and they can take part in the decision. Testing a young child rarely helps, because stomach checks and surgery are not offered at that age.
Does H. pylori matter for CDH1 carriers?
H. pylori is a common stomach infection that raises stomach cancer risk generally. Carriers are usually tested for it and treated if it is found. Clearing it is sensible, although it does not remove the risk that comes from CDH1.
What follow-up is needed after the stomach is removed?
Vitamin B12 injections for life, regular blood tests for iron, calcium and vitamin D, and support from a dietitian. Many people also need smaller, more frequent meals. Women continue breast screening as before.
Can the yearly checks be done near my home?
Breast MRI and blood tests can often be arranged closer to home. The stomach endoscopy is best done at an experienced centre, even if that means travel. Your team can help plan the year so several checks fall on one visit.
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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Where to find us
Our centres in and around Hyderabad
Addressed by landmark, because that is how this city navigates. One helpline books a consultation at any of these centres, and your team will tell you where counselling and testing take place.
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Sources
- GeneReviews (NCBI) — Hereditary Diffuse Gastric Cancer
- MedlinePlus Genetics — Hereditary diffuse gastric cancer
- NCCN — Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate
- NHS — Gastroscopy
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
Gastric surveillance for CDH1 carriers who decline surgeryThe endoscopy route in depth, and its limitsCDH1 and lobular breast cancerWhy breast MRI is part of the plan for womenCDH1 positive: what happens nextThe first steps after a positive resultTesting the family for CDH1Who to tell, and when children are tested
Talk to us
Not sure which checks your CDH1 result calls for?
Bring the report and your family history, and a genetic counsellor can help draw up a plan that fits you, in Telugu if you prefer. One helpline serves every CION centre.