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CDH1 and lobular breast cancer: what women need to know | CION Cancer Clinics
Women who carry a CDH1 fault have a substantially raised risk of lobular breast cancer, a type that grows in thin lines and can hide on a mammogram. That is why carriers are usually offered breast MRI. This page explains what makes lobular cancer different, how breast checks work across a carrier's life, and who should think about CDH1 testing. 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
- Does a CDH1 fault raise breast cancer risk?
- What makes lobular breast cancer different?
- What does breast care look like for a woman who carries CDH1?
- The words you will meet, in plain language
- How does lobular cancer compare with the common type?
- What this page cannot tell you
- Four things women tell us about CDH1 and the breast
- Common questions about CDH1 and lobular breast cancer
The short answer
Does a CDH1 fault raise breast cancer risk?
Yes, for women. A CDH1 fault gives a substantially raised lifetime risk of lobular breast cancer, a type that grows in thin lines rather than a lump. Because it is harder to feel and harder to see on a mammogram, carriers are usually offered breast MRI as well.
Why this gene affects the breast
CDH1 makes E-cadherin, the protein that makes cells stick to their neighbours. Lobular breast cancer cells have lost that protein. They slip loose and spread out in single file through the breast tissue. The same loss of stickiness explains the diffuse stomach cancer seen in CDH1 families.
It works in both directions
Some women learn about CDH1 because stomach cancer runs in the family. Others learn about it after their own lobular breast cancer, with no stomach cancer in any relative. Both routes lead to the same gene, but the advice about the stomach can differ between them.
What it means for men
No clear raise in male breast cancer has been shown. Men share the stomach risk and can pass the fault to their daughters. This is why a brother or father should be part of the family testing conversation, even though the breast checks on this page do not apply to him.
A CDH1 fault is a statement about risk. It is not a breast cancer diagnosis.Lobular cancer, explained
What makes lobular breast cancer different?
It behaves differently from the common type, and those differences shape the whole plan for a carrier.
It grows in lines
Instead of a firm lump, it forms a thickening or a vague area that feels different. Many women notice a change in shape or texture rather than a clear lump. Some notice a dimple in the skin or a nipple that has started to turn inwards.
It hides on a mammogram
Because the cells spread thinly, the X-ray picture can look almost normal. MRI picks up many cancers that a mammogram misses.
What this means
- MRI is usually added for carriers
- New breast changes need prompt review
It is often hormone-sensitive
Most lobular cancers grow in response to oestrogen. This means hormone tablets are often part of treatment if it does develop.
It can affect both breasts
Lobular cancer is more likely than the common type to appear in the second breast as well. Lobular cancer in both breasts, or at a young age, is one reason to think about CDH1 testing.
Not sure whether this applies to you?
Ask an oncologistAcross a lifetime
What does breast care look like for a woman who carries CDH1?
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After the result
A breast specialist and a genetic counsellor explain the risk and agree a written plan. Your family history shapes when checks start.
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From around the age of thirty
Yearly breast MRI is usually offered, often alongside a mammogram later on. Some women start earlier if a relative was diagnosed very young.
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Through middle life
Surveillance continues each year. You learn what your own breasts normally feel like, so you notice a new thickening early.
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If you are pregnant or breastfeeding
MRI is usually paused. Ultrasound may be used instead, and any new change should still be checked promptly.
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At any point
Some women choose preventive breast surgery. It is one option among several, not a requirement, and it is discussed on its own page.
On your report
The words you will meet, in plain language
- Lobular breast cancer
- A breast cancer that starts in the milk-producing lobules and spreads in thin lines.
- Ductal breast cancer
- The more common type, starting in the milk ducts and usually forming a lump.
- E-cadherin
- The protein CDH1 makes. Lobular cancer cells lack it, and pathology reports often mention it.
- Hormone receptor-positive
- The cancer grows in response to oestrogen, so hormone tablets can slow it down.
- Breast MRI
- A scan using a magnet and a dye injection. It shows lobular cancers better than a mammogram.
- Germline
- Present in every cell from birth, and so it can be passed on. The opposite, somatic, means found only in the tumour.
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Side by side
How does lobular cancer compare with the common type?
Lobular
Ductal
Linked to inherited CDH1 faults
Linked more to BRCA and other genes
Often a thickening, not a lump
Usually a firm, distinct lump
Can be hard to see on a mammogram
Usually visible on a mammogram
More likely to affect both breasts
Usually one breast
Being straight with you
What this page cannot tell you
It cannot tell you your own breast cancer risk. The figures published for CDH1 come from small studies, mostly outside India, and they vary. What your specific variant means is a question for the counsellor who ordered the test.
It cannot decide the stomach question for you
A woman found to carry CDH1 after lobular breast cancer, with no stomach cancer in the family, faces a hard choice about the stomach. The right plan depends on the family history and on the variant. That conversation needs a genetic team and a specialist surgeon. It often takes more than one visit, and it is reasonable to ask for time before you decide anything.
Who this does not apply to
Most women with lobular breast cancer do not carry CDH1. It is the second most common breast cancer type, and most cases come later in life with no family pattern. Testing is usually considered when it came young, in both breasts, or alongside stomach cancer in the family. A change found only inside the tumour is covered on our targeted therapy pages.
Not sure whether your history qualifies? Call the helpline and describe it. You will get an honest answer.Commonly believed
Four things women tell us about CDH1 and the breast
"My mammogram was clear, so I am fine."
A clear mammogram is reassuring but can miss lobular cancer. This is why carriers are usually offered MRI as well, and why a new breast change should never wait.
"CDH1 is a stomach gene, so my breasts are not at risk."
For women, CDH1 raises both risks. Breast surveillance is still needed even after the stomach has been removed.
"Every woman with lobular breast cancer should be tested for CDH1."
Most lobular breast cancer is not inherited. Testing is advised when it came young, in both breasts, or with stomach cancer in the family.
"If I carry CDH1, I must have my breasts removed."
Preventive breast surgery is a choice some women make, not a rule. Regular MRI is an accepted alternative, and your team will support whichever you choose.
Questions we are asked
Common questions about CDH1 and lobular breast cancer
How much does CDH1 raise breast cancer risk?
It gives women a substantially raised lifetime risk of lobular breast cancer, higher than in the general population. Published figures vary between studies. Your counsellor can explain what the evidence suggests for your family.
Is treatment different if a carrier gets breast cancer?
Treatment is planned on the cancer itself, much as for any lobular breast cancer. Knowing you carry CDH1 may influence surgery choices, such as whether to treat both breasts. Your breast team will talk this through.
I had lobular breast cancer and tested positive. Must my stomach come out?
Not automatically. If nobody in the family had stomach cancer, specialist endoscopy may be offered as an alternative. The decision depends on your history and your variant. It is one option among several.
Can I use hormone replacement or the pill?
This is a question for your breast team and gynaecologist, because it depends on your age, symptoms and history. Do not stop or start any hormone medicine without asking them first.
Where can I get breast MRI in Hyderabad?
Breast MRI is available at several centres in Hyderabad, though not every scan centre offers it. Your team can refer you to one that does. Ask for a centre that reads breast MRI regularly.
Should my daughter be tested?
Usually from the late teens, when she can take part in the decision herself. Breast checks do not start until later, but the stomach question may come earlier. A counsellor can help plan the timing.
My report says variant of uncertain significance. What now?
It means a change was found whose effect is not yet known. It should not lead to surgery. Breast checks follow your family history. Ask how you will be told if it is reclassified.
Where do I start?
Bring your report and a list of every breast and stomach cancer in the family, with rough ages. A genetic counsellor can plan the next steps. Call the CION helpline if you are not sure where to go.
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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Sources
- GeneReviews (NCBI) — Hereditary Diffuse Gastric Cancer
- MedlinePlus Genetics — CDH1 gene
- National Cancer Institute — Genetics of Breast and Gynecologic Cancers (PDQ) - Health Professional Version
- Cancer Research UK — Inherited cancer genes and increased cancer risk
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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Carrying CDH1 and unsure how your breasts should be checked?
Bring your report and your family history. We will help you set out a breast surveillance plan you can actually follow. One helpline serves every CION centre.