Living with Hereditary papillary renal cell carcinoma
An inherited condition that raises the chance of a type of kidney cancer, often in both kidneys.
Understanding Hereditary papillary renal cell carcinoma
The tumors tend to occur in both kidneys and in more than one place in each kidney. It begins 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.
- 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 says changes in genes (also called variants) cause this condition. It is autosomal dominant, so one changed copy of the gene is enough to raise risk.
Also known as: familial renal papillary carcinoma; hereditary kidney papillary carcinoma; hereditary papillary carcinoma of kidney; hereditary papillary carcinoma of the kidney; hereditary papillary renal carcinoma; hereditary papillary renal cell cancer
Patient organizations
- Kidney Cancer AssociationHereditary papillary renal cell carcinoma · United States
- American Cancer SocietyHereditary papillary 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 papillary renal cell carcinoma.
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