Living with Clear cell sarcoma of kidney
A rare kidney tumor that often shows up as a lump in the belly and may have spread by the time it is found.
Understanding Clear cell sarcoma of kidney
It is usually one tumor in one kidney and has a tendency to grow into blood vessels. Spread to lymph nodes, bones, lungs, brain, and liver is common at the time of diagnosis. GARD lists onset at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD says they may include:
- A lump you can feel in the belly
- Belly or side pain
- Blood in the urine
- Low red blood cells (anemia)
- Tiredness (fatigue)
- Bone pain or cough if it has spread
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, genetic specialists and kidney specialists.
- 3Consider genetic testing
Changes in BCOR are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Kidney Cancer Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Kidney Cancer Association
- 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 Kidney Cancer Association 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 lists the BCOR gene for this condition but doesn't describe the cause further.
Also known as: ccsk; ccsk - clear cell sarcoma of kidney; childhood clear cell sarcoma of the kidney; childhood kidney clear cell sarcoma; childhood renal clear cell sarcoma; clear cell sarcoma - kidney
Patient organizations
- Kidney Cancer AssociationClear cell sarcoma of kidney · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Clear cell sarcoma of kidney.
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