Living with Hereditary site-specific ovarian cancer syndrome
An inherited pattern of ovarian cancer risk caused by gene changes, often with other cancer risks too.
Understanding Hereditary site-specific ovarian cancer syndrome
It is usually tied to extra risks of other cancers. The most common are hereditary breast and ovarian cancer (HBOC) and hereditary nonpolyposis colorectal cancer (HNPCC, also called Lynch syndrome). Gene changes in STK11, which causes Peutz-Jeghers syndrome, are linked to a risk of ovarian cancer, typically sex cord stromal tumors.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include gynecologic cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Gynecologic cancer specialists (gynecologic oncologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National Ovarian Cancer Coalition and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says it is caused by inherited gene changes. These include BRCA1 and BRCA2 (HBOC), DNA mismatch-repair genes (HNPCC), and STK11. Other genes, such as RAD51C, RAD51D, and PALB2, raise risk in a minority of people.
Patient organizations
- National Ovarian Cancer CoalitionHereditary site-specific ovarian cancer syndrome · United States
- Ovarian Cancer Research AllianceHereditary site-specific ovarian cancer syndrome · United States
- American Cancer SocietyGynecological tumors · United States
- SHARE: Cancer SupportGynecological tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary site-specific ovarian cancer syndrome.
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