Living with Rhabdoid tumor
A rare, fast-growing soft tissue cancer in infants and children that can start in the kidney, liver, nerves, or elsewhere.
Understanding Rhabdoid tumor
It can arise in the kidney, liver, nerves, or other soft tissue. When it involves the brain or spinal cord, it is called an atypical teratoid rhabdoid tumor. First symptoms often come from a large tumor pressing on nearby areas, such as trouble breathing, a belly lump, or nerve weakness. GARD says no standard care exists, but many studies are ongoing.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly pain or a lump in the belly
- Blood in the urine
- Firm lump under the skin
- Trouble breathing
- Headache
- Nerve weakness or paralysis
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 cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation
- 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 Alex's Lemonade Stand Foundation
- 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
In about 90% of cases it is caused by a change in the SMARCB1 gene, a tumor suppressor gene. In rare cases, it is caused by a change in the SMARCA4 gene.
Also known as: malignant rhabdoid tumor; malignant rhabdoid tumour; rdt; rhabdoid sarcoma
Patient organizations
- Alex's Lemonade Stand FoundationRhabdoid tumor · United States
You are more than your diagnosis
Perspectives from people navigating life with Rhabdoid tumor.
Explore research for Rhabdoid tumor
Explore actively recruiting Rhabdoid tumor studies with HealthSpark.
Find actively recruiting studies for Rhabdoid tumor with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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