Overview
Rare uterine adnexal tumors are uncommon growths that develop in the structures near the uterus, known as the adnexa. The adnexa include the ovaries, fallopian tubes, and the surrounding connective tissues and ligaments. These tumors can be benign (non-cancerous) or malignant (cancerous), and they encompass a wide variety of tumor types that do not fit into the more common categories of ovarian or fallopian tube cancers. Because they are so rare, they are often difficult to diagnose and may be discovered incidentally during imaging for other reasons or during surgery. Symptoms can vary widely depending on the size, location, and type of tumor. Some people may have no symptoms at all, while others may experience pelvic pain, abdominal swelling, abnormal bleeding, or pressure on nearby organs like the bladder or bowel. In some cases, a mass may be felt during a routine pelvic exam. The treatment landscape for rare uterine adnexal tumors depends heavily on the specific tumor type, whether it is benign or malignant, and how far it has spread. Surgery is often the primary treatment, sometimes followed by chemotherapy or radiation therapy for malignant tumors. Because these tumors are so uncommon, treatment decisions are often made on a case-by-case basis, ideally by a team of specialists experienced in gynecologic oncology and rare tumors. Research is ongoing, but the rarity of these tumors makes large clinical trials challenging.
Key symptoms:
Pelvic pain or discomfortAbdominal bloating or swellingA lump or mass felt in the pelvic areaAbnormal vaginal bleedingPain during intercourseFeeling of pressure on the bladder or bowelFrequent urinationConstipationUnexplained weight lossFatigueLoss of appetiteBack painIrregular menstrual periods
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Rare uterine adnexal tumor.
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Rare Disease Specialist
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
Travel Grants
No travel grants are currently matched to Rare uterine adnexal tumor.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.What specific type of adnexal tumor do I have, and is it benign or malignant?,What stage is my tumor, and has it spread beyond the original site?,What are my treatment options, and what do you recommend for my specific case?,Will I need surgery, and if so, how extensive will it be? Can my fertility be preserved?,Should I have genetic testing to check for hereditary cancer syndromes?,What is the expected prognosis for my specific tumor type and stage?,Are there any clinical trials or specialized centers I should consider?
Common questions about Rare uterine adnexal tumor
What is Rare uterine adnexal tumor?
Rare uterine adnexal tumors are uncommon growths that develop in the structures near the uterus, known as the adnexa. The adnexa include the ovaries, fallopian tubes, and the surrounding connective tissues and ligaments. These tumors can be benign (non-cancerous) or malignant (cancerous), and they encompass a wide variety of tumor types that do not fit into the more common categories of ovarian or fallopian tube cancers. Because they are so rare, they are often difficult to diagnose and may be discovered incidentally during imaging for other reasons or during surgery. Symptoms can vary widely
How is Rare uterine adnexal tumor inherited?
Rare uterine adnexal tumor follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Rare uterine adnexal tumor typically begin?
Typical onset of Rare uterine adnexal tumor is adult. Age of onset can vary across affected individuals.
Which specialists treat Rare uterine adnexal tumor?
1 specialists and care centers treating Rare uterine adnexal tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.