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Surveillance endoscopy for HDGC: the Cambridge protocol | CION Cancer Clinics
Cambridge protocol endoscopy is a slow, detailed camera examination of the stomach, done once a year for CDH1 carriers who have not had a preventive gastrectomy. It takes many small biopsies because early diffuse cancer rarely shows on camera. This page explains how it differs from a routine endoscopy, what happens on the day, and why it helps but cannot promise to catch everything. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
On this page
- What is Cambridge protocol surveillance endoscopy?
- How is it different from a routine endoscopy?
- What happens at a surveillance endoscopy appointment?
- Words you will meet on an endoscopy report, in plain language
- Four things carriers believe about surveillance endoscopy
- What this page cannot tell you
- Common questions about surveillance endoscopy
The short answer
What is Cambridge protocol surveillance endoscopy?
It is a slow, detailed camera examination of the stomach, done once a year for people with an inherited risk of diffuse stomach cancer. The endoscopist looks carefully for tiny pale patches and takes around thirty small biopsies from set areas of the stomach. It is designed for CDH1 carriers who have not had, or are not yet ready for, a preventive gastrectomy.
Why an ordinary endoscopy is not enough
Diffuse stomach cancer starts as tiny clusters of cells under the lining. It usually does not form a lump or an ulcer. A routine endoscopy looks for exactly those things, so it can pass as normal in someone whose stomach already holds early cancer cells. The Cambridge protocol spends far longer looking, and samples the lining even where nothing looks wrong.
What it can and cannot do
It can find early changes and help people who are delaying surgery stay watched. It cannot see everything. Even with many biopsies, only a small fraction of the stomach lining is sampled. That is why guidelines still recommend preventive gastrectomy for most carriers, and treat surveillance as the alternative.
A clear surveillance endoscopy is reassuring. It is not proof that no cancer cells are present.What makes it different
How is it different from a routine endoscopy?
Four things set it apart. Ask your centre whether it follows all of them.
A dedicated, longer look
The endoscopist spends much longer than usual inspecting the stomach with a high-definition camera. The stomach is inflated and deflated to see the lining at different stretches. Rushing this step is the commonest reason small changes are missed.
Biopsies from set areas
Around thirty small samples are taken from five areas of the stomach, even where the lining looks healthy. This mapping gives the best chance of catching hidden cells. Each sample is labelled by area, so any finding can be traced back to where it came from.
Targeted biopsies too
Any pale patch, small dip or unusual area is sampled separately. These subtle pale spots are the most common visible sign of early diffuse cancer.
Checks for H. pylori
Samples are tested for this common stomach germ. If it is found, you are treated with a short course of medicines to clear it.
Also looked at
- The lower food pipe, for small inlet patches
- Any inflammation that could hide a change
Not sure whether this applies to you?
Ask an oncologistOn the day
What happens at a surveillance endoscopy appointment?
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Before you arrive
You will be told not to eat for several hours beforehand, and when to stop drinking water. Tell the unit about any blood thinners, diabetes medicines or allergies well in advance.
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Sedation
Because the test takes longer than usual, most centres give sedation through a small needle in your arm. Your throat may also be numbed with a spray.
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The examination
A thin flexible camera passes through the mouth into the stomach. The endoscopist inspects the lining slowly and takes the biopsies. The samples are painless to take.
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Recovery
You rest until the sedation wears off. A sore throat and some bloating are common. You will need someone to take you home, and you should not drive for the rest of that day.
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The results
The biopsies are examined by a pathologist, which takes longer than the procedure itself. Your team will explain the findings and whether anything changes in your plan.
On your report
Words you will meet on an endoscopy report, in plain language
- Endoscopy
- A camera test that looks inside the food pipe and stomach through the mouth.
- Biopsy
- A tiny piece of the lining taken for a microscope check. It is the only way to see diffuse cancer cells.
- Signet ring cells
- The look of diffuse cancer cells under a microscope. Finding them in a biopsy is the key result.
- Pale area
- A small lighter patch of lining. The most common visible clue to early diffuse cancer, though most are harmless.
- H. pylori
- A common stomach germ. It causes inflammation that can make the lining harder to read.
- Inlet patch
- A small island of stomach-type lining in the food pipe, checked and sampled during the test.
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Many biopsies are taken, so a little bleeding is possible. If you vomit blood, pass black or tarry stools, have severe tummy or chest pain, or develop a fever after the endoscopy, go to the nearest emergency department the same day. Tell them you have had an endoscopy with biopsies, and take your discharge sheet with you.
Commonly believed
Four things carriers believe about surveillance endoscopy
A routine endoscopy is quicker and takes few biopsies. Surveillance for diffuse cancer needs an endoscopist who follows the full protocol and a pathologist who knows what to look for.
Clear biopsies show that the samples taken were normal. Hidden cells can sit between them. Surveillance continues, and the surgery conversation stays open.
Early findings in carriers are often very small. They usually strengthen the case for gastrectomy, which is then planned carefully with your team, not rushed.
Surgery removes the risk far more completely. Surveillance is a reasonable choice while you delay or decline surgery, but it cannot promise to catch every cancer.
Being straight with you
What this page cannot tell you
It cannot tell you whether surveillance or surgery is right for you, or read your biopsy results. That depends on your variant, your family history, your age and your own priorities. What your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
The protocol comes from a small number of expert centres, mostly in the United Kingdom and North America. Studies of how well it works are small, and they show that cancer cells can be missed. Very few Indian centres have published their experience with it.
Who this does not apply to
If you do not carry a CDH1 fault and your family history does not suggest HDGC, you do not need this test. Ordinary indigestion or acidity is investigated with a routine endoscopy, and most acidity in India has nothing to do with an inherited fault. If you have already had a total gastrectomy, there is no stomach left to watch. Your follow-up then focuses on nutrition and, for women, breast checks.
Ask where your biopsies will be read. A pathologist used to these samples makes a real difference.Questions we are asked
Common questions about surveillance endoscopy
How often is surveillance endoscopy done?
Usually once a year. After several clear years, some teams may lengthen the gap, but that is a decision for the endoscopist who knows your history. Keep every report, so a new team can compare results if you ever move.
Will taking thirty biopsies hurt?
No. The stomach lining has no pain nerves of the kind skin has, so the biopsies are not felt. With sedation, most people remember little of the test. A sore throat and bloating afterwards are the usual complaints.
Who should have Cambridge protocol surveillance?
Mainly CDH1 carriers who decline or delay preventive gastrectomy. It is also used for some families with a strong diffuse stomach cancer history but no fault found, and for people waiting for surgery. Your counsellor or gastroenterologist will say whether it applies to you.
What happens if the biopsies find cancer cells?
Your team will meet to review the findings, often with a second pathologist. For most people, it strengthens the advice to have a gastrectomy. The timing and type of surgery are then planned with you, with time to ask questions and prepare.
Can I have surveillance in Hyderabad?
Hyderabad has experienced endoscopy units. Ask whether the endoscopist follows the full Cambridge protocol and whether the pathology team has seen diffuse cancer samples before. Call the CION helpline if you need help finding a suitable team.
Do I need to stop any medicines before the test?
Possibly. Blood thinners, some diabetes medicines and acid-lowering tablets may need to be paused or adjusted. Never stop a medicine on your own. Tell the endoscopy unit what you take when you book, and follow their written instructions.
Why am I tested for H. pylori?
This germ is very common in India and causes inflammation of the stomach lining. Inflammation can hide the small pale patches the endoscopist is looking for. Clearing the germ makes each later examination easier to read.
Is surveillance cheaper than surgery?
Each surveillance visit costs far less than a gastrectomy, but it repeats every year. Over many years the totals can become significant. Ask your team for an estimate of both paths, and check with your insurer which costs are covered.
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.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- The Lancet Oncology (IGCLC) — Hereditary diffuse gastric cancer: updated clinical practice guidelines
- GeneReviews (NCBI) — Hereditary Diffuse Gastric Cancer
- NHS — Gastroscopy
- MedlinePlus Genetics — Hereditary diffuse gastric cancer
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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Delaying gastrectomy and need a surveillance plan?
Tell us about your CDH1 result and what you have been advised so far. We will help you find an endoscopy team that follows the full protocol. One helpline serves every CION centre.