Overview
Hereditary gastric cancer refers to a group of inherited conditions that significantly raise a person's risk of developing cancer in the stomach. Unlike most stomach cancers, which happen by chance, hereditary gastric cancer runs in families and is caused by changes (mutations) in specific genes passed down from parents to children. The most well-known form is called Hereditary Diffuse Gastric Cancer (HDGC), which is linked to mutations in the CDH1 gene. Another form involves hereditary intestinal-type gastric cancer, sometimes connected to Lynch syndrome or other hereditary cancer syndromes. The stomach cancer that develops in these families can be hard to detect early because it often grows in a spread-out pattern beneath the stomach lining rather than forming a single visible lump. This makes it difficult to spot on standard endoscopy. Symptoms may include persistent stomach pain, difficulty swallowing, unexplained weight loss, nausea, and a feeling of fullness after eating only small amounts. Treatment options include close surveillance with regular endoscopies, preventive (prophylactic) total gastrectomy (surgical removal of the stomach) for high-risk individuals, and standard cancer treatments such as surgery, chemotherapy, and targeted therapy if cancer is diagnosed. Early identification through genetic testing is critical, as it allows families to take steps to prevent cancer or catch it at an earlier, more treatable stage.
Also known as:
Key symptoms:
Persistent stomach pain or discomfortUnexplained weight lossDifficulty swallowingFeeling full quickly after eating small amountsNausea or vomitingLoss of appetiteHeartburn or indigestion that does not go awayBloating after mealsBlood in vomit or dark, tarry stoolsFatigue and low energyAnemia (low red blood cell count)
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventAlliance for Clinical Trials in Oncology — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableEnhertu
as monotherapy for the treatment of adult patients with locally advanced or metastatic HER2-positive (IHC 3+ or IHC 2+/ISH positive) gastric or gastroesophageal junction adenocarcinoma who have receiv…
as monotherapy for the treatment of adult patients with locally advanced or metastatic HER2-positive (IHC 3+ or IHC 2+/ISH positive) gastric or gastroesophageal junction adenocarcinoma who have received a prior trastuzumab-based regimen
CYRAMZA
Treatment of advanced gastric or gastro-esophageal junction adenocarcinoma, as a single agent or in combination with paclitaxel, after prior fluoropyrimidine- or platinium-containing chemotherapy.
Clinical Trials
View all trials with filters →No actively recruiting trials found for Hereditary gastric cancer at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
2 resourcesTravel Grants
No travel grants are currently matched to Hereditary gastric cancer.
Community
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Start the conversation →Latest news about Hereditary gastric cancer
1 articlesCaregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Should I have genetic testing, and which genes should be included in the panel?,What is my personal risk of developing gastric cancer based on my family history and test results?,Should I consider prophylactic gastrectomy, and what would life look like after that surgery?,How often should I have surveillance endoscopies, and how reliable are they at finding early cancer?,Should my children or siblings be tested, and at what age?,Are there clinical trials I should know about for hereditary gastric cancer?,What nutritional support and dietary guidance is available if I have surgery?
Common questions about Hereditary gastric cancer
What is Hereditary gastric cancer?
Hereditary gastric cancer refers to a group of inherited conditions that significantly raise a person's risk of developing cancer in the stomach. Unlike most stomach cancers, which happen by chance, hereditary gastric cancer runs in families and is caused by changes (mutations) in specific genes passed down from parents to children. The most well-known form is called Hereditary Diffuse Gastric Cancer (HDGC), which is linked to mutations in the CDH1 gene. Another form involves hereditary intestinal-type gastric cancer, sometimes connected to Lynch syndrome or other hereditary cancer syndromes.
How is Hereditary gastric cancer inherited?
Hereditary gastric cancer follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Hereditary gastric cancer typically begin?
Typical onset of Hereditary gastric cancer is adult. Age of onset can vary across affected individuals.
Which specialists treat Hereditary gastric cancer?
25 specialists and care centers treating Hereditary gastric cancer are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.