Overview
Growing teratoma syndrome (GTS) is a rare condition that occurs in patients who have been treated with chemotherapy for a type of cancer called a germ cell tumor. In GTS, even though the cancer markers in the blood (like AFP and HCG) return to normal levels during or after chemotherapy, the tumor masses in the body continue to grow or new masses appear. Importantly, these growing masses are made up of mature teratoma tissue, which is benign (not cancerous), rather than active cancer cells. Teratomas are unusual growths that can contain different types of tissue such as hair, teeth, bone, or fat. GTS most commonly affects young men with testicular germ cell tumors, but it can also occur in women with ovarian germ cell tumors or in patients with tumors located in the chest or abdomen. The growing masses can cause problems by pressing on nearby organs, leading to pain, swelling, or blockages depending on their location. The masses can grow quite large and may appear in the original tumor site or spread to other areas like the lymph nodes in the abdomen or the lungs. The main treatment for growing teratoma syndrome is complete surgical removal of all the growing masses. Chemotherapy and radiation therapy are generally not effective against mature teratoma tissue. If the masses are not fully removed, they tend to keep growing and can cause serious complications. Early recognition of GTS is important because it prevents unnecessary additional rounds of chemotherapy, which would not help and could cause harmful side effects. With successful complete surgical removal, the outlook is generally favorable.
Key symptoms:
Growing mass or lump despite normal blood tumor markersAbdominal swelling or bloatingAbdominal pain or discomfortBack painFeeling of fullness in the bellyDifficulty breathing if masses are in the chestSwelling in the groin or scrotumNausea or vomiting from pressure on the intestinesLeg swelling from pressure on blood vesselsUrinary problems from pressure on the kidneys or bladderNew lumps appearing in different body areasWeight gain from large masses
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 Growing teratoma syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Growing teratoma syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Growing teratoma syndrome.
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 Growing teratoma syndrome.
Community
No community posts yet. Be the first to share your experience with Growing teratoma syndrome.
Start the conversation →Latest news about Growing teratoma syndrome
No recent news articles for Growing teratoma syndrome.
Follow this condition to be notified when news becomes available.
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.Can all of the growing masses be completely removed with surgery?,How will you monitor me after surgery to check for any regrowth?,Is there any risk that the teratoma could turn into cancer over time?,How often will I need follow-up imaging scans and blood tests?,Should I avoid any further chemotherapy for these growing masses?,What are the risks and expected recovery time from the surgery?,Are there any clinical trials or new treatments being studied for growing teratoma syndrome?
Common questions about Growing teratoma syndrome
What is Growing teratoma syndrome?
Growing teratoma syndrome (GTS) is a rare condition that occurs in patients who have been treated with chemotherapy for a type of cancer called a germ cell tumor. In GTS, even though the cancer markers in the blood (like AFP and HCG) return to normal levels during or after chemotherapy, the tumor masses in the body continue to grow or new masses appear. Importantly, these growing masses are made up of mature teratoma tissue, which is benign (not cancerous), rather than active cancer cells. Teratomas are unusual growths that can contain different types of tissue such as hair, teeth, bone, or fa
How is Growing teratoma syndrome inherited?
Growing teratoma syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Growing teratoma syndrome typically begin?
Typical onset of Growing teratoma syndrome is adult. Age of onset can vary across affected individuals.