Overview
Microcystic stromal tumor is a very rare type of benign (non-cancerous) tumor that grows in the ovary. It belongs to a group called sex cord-stromal tumors, which develop from the supporting tissue of the ovary rather than from egg cells. These tumors are sometimes called microcystic stromal tumors of the ovary (MCST). They are almost always found in just one ovary and do not typically spread to other parts of the body, which makes them different from many other ovarian tumors. Most women with this tumor do not have obvious symptoms at first. When symptoms do appear, they are usually caused by the growing mass pressing on nearby organs. Common signs include pelvic pain or pressure, a feeling of fullness in the abdomen, and sometimes an abnormal lump that can be felt or seen on imaging. Some tumors are found by accident during a scan done for another reason. The main treatment is surgery to remove the tumor, which is usually curative. Because these tumors are so rare, there is limited long-term data, but the outlook after surgery is generally very good. Research has found that many of these tumors are linked to changes in a gene called CTNNB1, which is important for cell growth control. Ongoing research is helping doctors better understand this condition and how to manage it.
Also known as:
Key symptoms:
Pelvic pain or pressureFeeling of fullness or bloating in the lower abdomenA lump or mass in the pelvic areaAbdominal swellingIrregular menstrual periodsAccidental discovery on imaging done for another reasonDiscomfort during intercourse
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 Microcystic stromal tumor.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Microcystic stromal tumor 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
Travel Grants
No travel grants are currently matched to Microcystic stromal tumor.
Community
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Caregiver 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.Was my tumor completely removed, and what are the chances it could come back?,Do I need any additional treatment after surgery, or is surgery enough?,How often should I have follow-up appointments and what tests will be done?,Will this affect my ability to get pregnant in the future?,Should I have genetic testing, and could my family members be at risk?,Are there any symptoms I should watch for that would mean I need to come in urgently?,Should I be referred to a specialist center that has experience with rare ovarian tumors?
Common questions about Microcystic stromal tumor
What is Microcystic stromal tumor?
Microcystic stromal tumor is a very rare type of benign (non-cancerous) tumor that grows in the ovary. It belongs to a group called sex cord-stromal tumors, which develop from the supporting tissue of the ovary rather than from egg cells. These tumors are sometimes called microcystic stromal tumors of the ovary (MCST). They are almost always found in just one ovary and do not typically spread to other parts of the body, which makes them different from many other ovarian tumors. Most women with this tumor do not have obvious symptoms at first. When symptoms do appear, they are usually caused b
How is Microcystic stromal tumor inherited?
Microcystic stromal tumor follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Microcystic stromal tumor typically begin?
Typical onset of Microcystic stromal tumor is adult. Age of onset can vary across affected individuals.
Which specialists treat Microcystic stromal tumor?
15 specialists and care centers treating Microcystic stromal tumor are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.