Living with Tumor-induced osteomalacia
A condition in which a small tumor makes a substance that causes the kidneys to lose phosphate and the bones to soften.
Understanding Tumor-induced osteomalacia
The tumor makes a substance called FGF23, which keeps the kidneys from absorbing phosphate. Phosphate is important for strong bones, so levels in the blood drop and levels in the urine rise. Most of these tumors are small, slow-growing, and benign. They most often appear in the skin, muscles, or bones of the arms and legs, or in the sinuses around the head. It can happen at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bone pain
- Softening of the bones (osteomalacia)
- Fractures from minor injury
- Weakness in upper arm and upper leg muscles
- Bowing of the long bones
- Low phosphate in the blood (hypophosphatemia)
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 bone and joint specialists, genetic specialists, hormone 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
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Hormone specialists (endocrinologists); 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 National Kidney 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
The tumor makes FGF23, which blocks the kidneys from absorbing phosphate. GARD says the exact reason the tumors develop is not known.
Also known as: oncogenic hypophosphatemic osteomalacia; oncogenic osteomalacia; osteomalacia due to neoplasm; osteomalacia due to neoplastic disease; tio
Patient organizations
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Tumor-induced osteomalacia.
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