Medical Oncologist
CION Cancer Clinics
Breast checks in CDH1 families: what women should expect | CION Cancer Clinics
A CDH1 fault raises the risk of stomach cancer, and in women it also raises the risk of lobular breast cancer. Women who carry it are usually offered a yearly breast MRI from about thirty, with mammograms added later. This page explains why MRI leads the plan, how checks change with age, and why they continue even after the stomach has been removed. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
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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
- Why does a stomach cancer gene need breast checks?
- What do breast checks for CDH1 carriers involve?
- How do breast checks change as you get older?
- Words you will meet on breast reports, in plain language
- Breast MRI and mammogram: how they compare
- Four things CDH1 families tell us about breast checks
- What this page cannot tell you
- Common questions about breast checks in CDH1 families
The short answer
Why does a stomach cancer gene need breast checks?
Because the same CDH1 fault that raises stomach cancer risk also raises a woman's risk of lobular breast cancer. Women who carry it are usually offered a yearly breast MRI from about the age of thirty, with mammograms added later. The aim is to find any breast cancer while it is small.
What lobular breast cancer is
Lobular cancer starts in the milk-producing glands of the breast. Its cells spread out in thin lines rather than clumping into a firm lump. That makes it harder to feel, and harder to see on a mammogram, than the more common kind of breast cancer. It is the reason MRI sits at the centre of the plan.
Why this is easy to miss
Families affected by hereditary diffuse gastric cancer, or HDGC, tend to focus on the stomach. That is where the most serious risk sits, and it is where the big decisions about surgery are made. Breast checks can quietly slip off the list, especially for a woman who has already had her stomach removed and feels the danger has passed.
Removing the stomach does nothing to the breast risk. Breast checks carry on after a gastrectomy.What the plan includes
What do breast checks for CDH1 carriers involve?
A typical plan has four parts. Your breast team adjusts the timing to your age and family history.
Yearly breast MRI
The main test. A contrast dye is injected into a vein and you lie face down in the scanner. MRI is better than a mammogram at showing lobular cancer, and it uses no radiation.
Mammograms, added later
An X-ray of the breast, usually added once you reach your late thirties or forties. Younger breasts are denser, so a mammogram shows less in them.
Examination by a doctor
A breast examination by a doctor at your yearly review, so changes you have not noticed are picked up.
Knowing your own breasts
Lobular cancer often shows as a thickening rather than a lump. Knowing what is normal for you helps you notice a change between scans.
Report these early
- An area that feels thicker or firmer
- A change in breast shape or size
- Skin that puckers or a nipple that pulls in
Not sure whether this applies to you?
Ask an oncologistAcross the years
How do breast checks change as you get older?
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When you learn you carry CDH1
Your counsellor explains both the stomach and the breast risk. If you are still in your twenties, checks usually have not started yet, but it helps to know what normal feels like for you.
-
From about thirty
Yearly breast MRI usually begins, alongside an examination by a doctor. This is the core of the plan for the next decade.
-
From your late thirties or forties
A yearly mammogram is usually added to the MRI. Some teams stagger the two so you have a check every half-year rather than both at once.
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Around pregnancy and breastfeeding
MRI contrast is usually avoided in pregnancy, and breastfeeding changes how the breast looks on a scan. Tell your team early so the schedule can be adjusted around it.
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Later in life
Checks continue, and the plan is reviewed as your health and preferences change. Stopping is a decision to make with your doctor.
On your report
Words you will meet on breast reports, in plain language
- CDH1
- The gene behind most HDGC. It makes a protein that helps cells stick together.
- E-cadherin
- The name of that sticking protein. When it is missing, cells loosen and can spread in single lines.
- Lobular breast cancer
- Breast cancer that starts in the milk glands and grows in thin strands. It is the type linked to CDH1.
- Dense breasts
- Breasts with more gland tissue than fat. Common in younger women, and harder to read on a mammogram.
- Contrast
- A dye injected before an MRI that helps areas of fast-growing tissue stand out on the scan.
- Recall
- Being asked back after a scan for another look. It happens often and usually does not mean cancer.
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Side by side
Breast MRI and mammogram: how they compare
Breast MRI
Mammogram
Better at showing lobular cancer
Can miss lobular cancer, especially in dense breasts
No radiation
A very small dose of radiation
Needs a dye injection and lying still
Quick, with brief pressure on the breast
More recalls for things that turn out harmless
Fewer recalls, and better at showing tiny calcium specks
Commonly believed
Four things CDH1 families tell us about breast checks
"My stomach has been removed, so I am safe now."
Gastrectomy removes the stomach risk only. The breast risk comes from the same gene and stays exactly as it was, so breast checks carry on for life.
"My mammogram was clear, so I do not need an MRI."
Lobular cancer is one of the types a mammogram is most likely to miss. For CDH1 carriers, MRI is the main test, and a clear mammogram on its own is not enough.
"There is no breast cancer in our family, so this does not apply."
Small families, early deaths from stomach cancer and relatives who were never diagnosed can all hide a breast pattern. The risk comes from carrying the fault, not from the family story.
"Removing both breasts is the only safe choice."
Preventive breast surgery is one option some carriers choose, and it is discussed on another page. Many women choose surveillance instead. Both are reasonable, and the decision is yours.
Being straight with you
What this page cannot tell you
It cannot tell you your own breast risk or when your checks should start. That depends on your exact variant, your age and who in your family had which cancer. What your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
HDGC is rare, and most research on CDH1 comes from a few large families abroad. Estimates of breast risk vary between studies, and families found through panel testing may have lower risks than the families first described. Indian data are very limited. The plan above follows international guidance, which is reviewed as evidence grows.
Who this does not apply to
Men who carry CDH1 are not offered breast surveillance, though their stomach risk is real. If you tested negative for your family's known fault, standard breast screening for your age applies. If you already have breast cancer, your oncologist plans your scans instead.
Breast MRI costs more than a mammogram and is not available at every centre. Ask your team where yours will be done before the first appointment.Questions we are asked
Common questions about breast checks in CDH1 families
At what age should breast checks start for a CDH1 carrier?
International guidance suggests a yearly breast MRI from about the age of thirty, with a doctor's examination at the same review. Your team may start earlier if a relative had breast cancer young. The exact timing is set by your breast doctor, not by this page.
Is breast MRI safe to repeat every year?
MRI uses a magnet and radio waves, not X-rays, so repeating it does not add radiation. The contrast dye is generally safe. Tell the team about any kidney problems, allergies or metal implants before the scan. Contrast is usually avoided during pregnancy.
What does lobular breast cancer feel like?
Often not a distinct lump. It may feel like a thickened or firmer area, or change the shape of the breast. The skin may pucker or the nipple may pull inward. Report any change to your team rather than waiting for the next scan, because lobular cancer can grow between checks.
I have had a gastrectomy. Do I still need breast checks?
Yes. Removing the stomach does not change breast risk at all. After surgery, the months of recovery can make it easy to let other appointments slide. Put your breast MRI back on the calendar once you are well enough.
Can I have breast checks while breastfeeding?
Checks can be adjusted, but breastfeeding makes the breast look busier on a scan and can make results harder to read. Some teams wait until feeding has stopped, others go ahead. Tell your team you are feeding so they can plan the timing with you.
Should my daughter start breast checks too?
Only if she has been tested and carries the fault. Testing for CDH1 is usually offered once a young person can decide for themselves, in the late teens. If she carries it, breast checks begin at the age her team advises. Her stomach plan usually comes first.
Does a CDH1 fault change how breast cancer is treated?
Lobular cancer in a CDH1 carrier is treated much like lobular cancer in anyone else, with surgery and other treatment planned on the tumour itself. Knowing about the fault may affect choices about the other breast. Your oncologist will talk through what applies to you.
Where can I have breast MRI in Hyderabad?
Several centres in the city offer breast MRI, but reading it well takes experience. Ask for a centre where radiologists read breast MRI regularly and can compare each scan with the last. Call the CION helpline if you need help arranging it.
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)
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Sources
- The Lancet Oncology (IGCLC) — Hereditary diffuse gastric cancer: updated clinical practice guidelines
- GeneReviews (NCBI) — Hereditary Diffuse Gastric Cancer
- MedlinePlus Genetics — CDH1 gene
- American Cancer Society — MRI for Breast Cancer Screening
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
Hereditary diffuse gastric cancer explainedThe whole syndrome, stomach and breast togetherCDH1 and lobular breast cancerWhy this gene is linked to one type of breast cancerBreast MRI screening: what it involvesWhat happens in the scanner, step by stepThe gastrectomy decision in HDGCThe stomach choice that sits alongside breast checks
Talk to us
Carrying CDH1 and unsure where to start with breast checks?
Tell us your age and what your counsellor has advised so far. We will help you set up breast checks with a team that reads breast MRI regularly. One helpline serves every CION centre.