Erythropoietin-Secreting Tumors

Erythropoietin-secreting tumors are rare cancers that produce too much erythropoietin, a hormone that tells your body to make more red blood cells. These tumors most often develop in the kidneys, liver, or cerebellum, the part of your brain that controls balance and movement. When these tumors release extra erythropoietin, your blood becomes thicker because you have too many red blood cells.

The most common types include renal cell carcinoma in the kidneys, hepatocellular carcinoma in the liver, and cerebellar hemangioblastoma in the brain. Your kidneys normally make erythropoietin when your body needs more oxygen-carrying red blood cells. But these tumors make it all the time, even when your body does not need it. This leads to a condition called secondary polycythemia, where your hematocrit level rises above normal ranges.

Often, an elevated hematocrit level found on a blood test is the first sign of these hidden tumors. Catching these changes early through regular blood testing can help doctors find cancer before it spreads. That is why monitoring your blood cell counts matters, especially if you have risk factors for kidney, liver, or brain tumors.

• Headaches and dizziness from thickened blood
• Red or flushed skin, especially on the face
• Fatigue and weakness despite high red blood cell counts
• Vision problems or blurred vision
• Itching after warm baths or showers
• Shortness of breath during normal activities
• Pain in the abdomen or back, depending on tumor location
• Unexplained weight loss
• Night sweats
• Blood clots in legs or lungs

Many people with erythropoietin-secreting tumors have no symptoms in the early stages. The first sign is often an abnormal blood test showing elevated hematocrit. Some patients only discover their tumor during routine screening or testing for other health concerns.

These tumors develop when cells in the kidney, liver, or brain begin growing abnormally and start producing erythropoietin. The exact cause varies by tumor type. Renal cell carcinoma risk increases with smoking, obesity, high blood pressure, and long-term dialysis. Hepatocellular carcinoma often develops in people with chronic hepatitis B or C infections, cirrhosis from alcohol use, or fatty liver disease. Cerebellar hemangioblastomas can occur sporadically or as part of von Hippel-Lindau disease, a genetic condition.

Risk factors include smoking tobacco, which doubles kidney cancer risk, chronic kidney disease, exposure to certain chemicals like trichloroethylene, family history of these cancers, and genetic syndromes. Age also plays a role, as most of these tumors occur in adults over 50. Men develop kidney and liver cancers more often than women. Catching elevated hematocrit early through blood testing can alert your doctor to investigate further before the tumor grows large.

Diagnosis starts with blood tests that measure your hematocrit level. Hematocrit shows the percentage of your blood made up of red blood cells. Elevated hematocrit, usually above 52% in men or 48% in women, can signal excess erythropoietin production. Rite Aid offers hematocrit testing as part of our flagship blood panel, helping you catch these changes early. If your hematocrit is high, your doctor will order additional tests to find the cause.

Further testing includes imaging studies like CT scans or MRIs to look for tumors in your kidneys, liver, or brain. Your doctor may also measure erythropoietin levels directly in your blood. A biopsy of any suspicious mass confirms whether cancer is present. Early detection through routine blood screening gives you the best chance at successful treatment before the tumor spreads to other organs.

• Surgical removal of the tumor, the primary treatment for most cases
• Targeted therapy medications that block cancer cell growth
• Immunotherapy to help your immune system fight cancer cells
• Radiation therapy for tumors that cannot be surgically removed
• Phlebotomy to remove excess blood and lower hematocrit levels
• Low-dose aspirin to reduce blood clot risk
• Staying well hydrated to help thin your blood
• Avoiding tobacco and alcohol to reduce further liver and kidney damage
• Regular monitoring with blood tests and imaging after treatment
• Working with an oncologist who specializes in these specific tumor types