Living with Renal cell carcinoma
An inherited form of kidney cancer with several tumors in both kidneys, usually found in adults.
Understanding Renal cell carcinoma
It tends to run in families in an autosomal dominant pattern, but not everyone with the gene change develops it. GARD notes it differs from other inherited kidney cancers like von Hippel-Lindau disease. GARD lists onset in adulthood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes this feature:
- Several tumors in both kidneys (papillary renal tumors)
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 and kidney 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 and Kidney Cancer Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation, 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 Alex's Lemonade Stand Foundation 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 it follows an autosomal dominant pattern with incomplete penetrance, meaning not everyone with the gene change develops it. It describes roles for genes like MET and VHL in related kidney cancers.
Also known as: cancer starting in small tubes in kidneys; hypernephroma; rcc; renal carcinoma; renal cell carcinoma - morphology; renal cell carcinoma (disease)
Patient organizations
- Alex's Lemonade Stand FoundationRenal cell carcinoma · United States
- Kidney Cancer AssociationRenal cell carcinoma · United States
- American Cancer SocietyRenal cell carcinoma · United States
- KCCureRenal 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 Renal cell carcinoma.
Explore research for Renal cell carcinoma
Explore actively recruiting Renal cell carcinoma studies with HealthSpark.
Find actively recruiting studies for Renal cell carcinoma 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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