How Long Will I Live With Essential Thrombocythemia?

Essential Thrombocythemia (ET) is a chronic blood disorder most often diagnosed in adults over the age of 60, though it can occur at any age. Many people with ET live long, fulfilling lives; in fact, for many patients, life expectancy is close to normal, especially with proper monitoring and care.

What Do the Statistics Say About ET Life Expectancy?

Large studies have shown that the median survival for patients with ET is approximately 20 years. For those diagnosed under the age of 60, median survival may extend to 33 years or more, depending on individual health factors.

While this might sound technical, “median survival” simply means that half of patients live longer than the stated number of years. In comparison to other blood cancers and related myeloproliferative neoplasms (MPNs), ET has one of the most favorable long-term outlooks:

• ET: ~20 years median survival
• Polycythemia Vera (PV): ~13.5 years
• Primary Myelofibrosis (PMF): ~6 years

Factors Affecting Prognosis for Essential Thrombocythemia

• Age at diagnosis: People diagnosed before age 60 generally live longer and have fewer complications.
• Thrombotic events: Blood clots (e.g., stroke, heart attack, deep vein thrombosis) are one of the leading causes of complications. Patients with a history of thrombosis are considered higher risk.
• Overall health: Patients with other health conditions, such as heart disease, diabetes or smoking, may have a higher risk of complications.
• High white blood cell counts (≥15×10⁹/L), low hemoglobin levels, and uncontrolled platelet levels may signal a worse prognosis
• Response to treatment: When therapies such as low-dose aspirin or cytoreductive medications effectively control the disease, people tend to have better outcomes.
• Genetic mutations: Having the JAK2 mutation is associated with a higher risk of clotting and shorter survival compared to those with CALR mutations, which tend to predict better outcomes.

What About Disease Progression?

ET is considered an indolent (slow-growing) condition. For most people, the disease remains stable for many years. However, a small percentage of patients may progress to:

• Post-ET myelofibrosis: A scarring of the bone marrow
• Acute Myeloid Leukemia (AML): A rare but serious transformation

The risk of transformation to AML is around 2–3% over 10 years, and to myelofibrosis about 9–20% over 20–30 years, depending on mutation type and other risk factors.

Your Prognosis Is Personal

While survival statistics are helpful, they are general trends and don’t define your individual journey. With routine monitoring, lifestyle adjustments, and personalized treatment, many patients can live with ET for decades. Having an ET specialist on your team provides you with the best way of truly understanding your prognosis. Visit HealthTree's ET Specialist Directory to find an ET expert near you. 

Keep reading What Are Treatments For Essential Thrombocythemia?

Sources: 

• Essential thrombocythemia: Biology, clinical features, thrombotic risk, therapeutic options and outcome
• Essential thrombocythemia: 2024 update on diagnosis, risk stratification, and management
• Essential Thrombocytosis