Living with Hereditary clear cell renal cell carcinoma
A kidney cancer that runs in families, often as part of von Hippel-Lindau disease.
Understanding Hereditary clear cell renal cell carcinoma
The tumor is made of clear cells that contain fat, within a network of blood vessels. It usually affects both kidneys and occurs in more than one spot. It appears in adulthood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Kidney specialists (nephrologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 KCCure 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 says changes in genes (also called variants) cause this condition. It is a feature of von Hippel-Lindau disease or other familial kidney cancer syndromes.
Also known as: hereditary clear cell renal carcinoma; hereditary clear cell renal cell adenocarcinoma; hereditary clear cell renal cell cancer; hereditary conventional (clear cell) renal cell carcinoma; hereditary primary clear cell renal cell adenocarcinoma; hereditary primary clear cell renal cell carcinoma
Patient organizations
- KCCureHereditary clear cell renal cell carcinoma · 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 Hereditary clear cell renal cell carcinoma.
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