Living with Hereditary leiomyomatosis and renal cell cancer
An inherited condition with smooth-muscle growths in the skin and uterus and a higher risk of kidney cancer.
Understanding Hereditary leiomyomatosis and renal cell cancer
Skin growths (cutaneous leiomyomas) usually appear around the third decade of life, on the trunk, arms, and legs. They can be painful or sensitive to cold or touch. Most women develop many large uterine fibroids earlier than usual. About 10 to 16 percent of people develop kidney cancer, often diagnosed in their forties. It can start at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Skin bumps or nodules (cutaneous leiomyomas)
- Itching
- Skin sensitive to cold or light touch
- Uterine fibroids in women
- Lower back pain, in kidney cancer
- Blood in the urine, in kidney cancer
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, kidney specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in FH 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
HLRCC Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Kidney specialists (nephrologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: HLRCC 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 HLRCC 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
It is caused by changes in the FH gene. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: cutaneous leiomyomata with uterine leiomyomata; familial leiomyomatosis; familial leiomyomatosis and renal cell cancer; familial leiomyomatosis cutis et uteri; familial leiomyomatosis with renal carcinoma; familial multiple cutaneous leiomyomas
Patient organizations
- HLRCC FoundationHereditary leiomyomatosis and renal cell cancer · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary leiomyomatosis and renal cell cancer.
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