Surviving with Hemangioblastoma

Survival rates for hemangioblastomas can vary depending on many factors, including tumor size, location, what the tumor cells look like under a microscope, and whether a patient has related genetic syndromes such as von Hippel-Lindau (VHL) disease. While hemangioblastomas are typically considered benign (non-cancerous), their impact on patient survival can be influenced by various clinical and specific disease factors.

Hemangioblastomas are generally associated with favorable long-term survival outcomes. Studies have reported 10-year survival rates ranging from 70% to 95% for patients with hemangioblastomas, indicating a generally good prognosis.

Several factors may influence the survival rates of patients with hemangioblastomas:

Larger hemangioblastomas are associated with a higher risk of complications and may be more challenging to treat surgically. However, the size of the tumor is not the only predictor of survival.

The location of the hemangioblastoma within the central nervous system can also impact patient survival. Tumors located in critical areas of the brain or spinal cord may pose higher risks of causing neurological problems and surgical complications, potentially affecting long-term survival outcomes.

This refers to staging and classification of the tumor on a cellular level that is conducted by a pathologist viewing a sample under a microscope.

• While hemangioblastomas are generally considered benign tumors, rare cases of aggressive behavior have been reported where benign tumors become cancerous.
• Higher histological grades or abnormal features on histopathological examination may be associated with poorer prognosis and decreased survival rates.

Approximately 20-30% of sporadic hemangioblastomas are connected to having VHL disease, an autosomal dominant genetic disorder caused by mutations in the VHL tumor suppressor gene. Patients with VHL disease are prone to developing many types of tumors including hemangioblastomas, renal cell carcinoma (cancer of the kidney), and other cancerous tumors. Having VHL disease may impact a patient’s overall survival due to the risk of developing multiple tumors over time.

The choice of treatment path for hemangioblastomas can also influence patient survival rates. Surgical resection is often the primary treatment approach for symptomatic or enlarging tumors. The goal of resection is to achieve complete tumor removal while preserving neurological function.

Studies have shown that complete surgical resection of hemangioblastomas is associated with improved long-term survival and decreased risk of tumor recurrence compared to subtotal, or less than total resection.

Radiation therapy may be recommended as an additional treatment following surgical resection or as a primary treatment for inoperable tumors. While radiation therapy can effectively control tumor growth and improve symptoms, its impact on long-term survival outcomes for hemangioblastomas remains less well-defined.

Prognosis varies depending on factors such as tumor size, location, and other patient-specific factors, including the indication for the radiation therapy. Several factors have been identified that may help predict patient survival and guide treatment decisions for hemangioblastomas. These factors include:

• Age at diagnosis—younger patients tend to do better with recovery, generally.
• Female sex—for reasons that are not entirely clear, women tend to recover from treatment better than men.
• Absence of neurological symptoms—asymptomatic, or incidental discovery of hemangioblastoma correlates with early development of the lesion.
• Single tumor—multiple tumors may imply advancing disease.
• Karnofsky Performance Score (KPS)—well validated scoring system which measures how well cancer patients can carry out daily tasks. 

Close monitoring of patients with hemangioblastomas through regular clinical evaluations and neuroimaging studies is essential to assess tumor progression, response to treatment, and overall prognosis.

Living with hemangioblastoma likewise presents unique challenges and uncertainties for affected individuals. From initial diagnosis to ongoing management and long-term follow-up, navigating life with hemangioblastoma requires resilience, adaptation, and a supportive network of healthcare providers, family, and friends.

Living with hemangioblastoma is an individualized journey, but there are nevertheless common experiences and challenges associated with this condition:

The journey of living with hemangioblastoma often begins with the diagnosis, which may come as a shock or source of uncertainty for individuals and their families. The process of undergoing diagnostic tests, consultations with healthcare providers, and treatment planning can be overwhelming and emotionally taxing.

Hemangioblastomas can cause a range of physical symptoms and functional impairments, depending on their size, location, and growth rate. Common symptoms may include headaches, dizziness, motor weakness, sensory deficits, coordination difficulties, and changes in vision or cognition.

Living with hemangioblastoma can bring about a wide range of emotions, which can include fear, anxiety, frustration, sadness, and uncertainty about the future. Coping with the physical symptoms, treatment-related side effects, and potential complications of the condition can all take a toll on one’s mental health and well-being.

Managing hemangioblastoma involves ongoing monitoring, treatment, and follow-up care to assess tumor progression, response to treatment, and overall health status. This may involve regular clinical evaluations, neuroimaging studies (such as MRI), and consultations with neurosurgeons, neurologists, oncologists, and other specialists.

Living with hemangioblastoma may require individuals to make lifestyle modifications and prioritize self-care to optimize their physical and emotional well-being. This may include adopting a healthy diet, engaging in regular exercise, getting adequate rest and sleep, managing stress, and avoiding alcohol and tobacco use.

Despite the challenges associated with living with hemangioblastoma, many individuals find strength, hope, and resilience in their journey.

By advocating for themselves, seeking support from others, and focusing on the present moment, individuals can navigate the ups and downs of living with a chronic medical condition.

Living with hemangioblastoma involves facing physical, emotional, and practical challenges while striving to maintain a sense of normalcy and well-being.

By embracing a multidisciplinary approach to care, cultivating resilience, and fostering a supportive network, individuals with hemangioblastoma can navigate their journey with courage, hope, and dignity.

• Survival rates following treatment are generally favorable. Rarely, hemangioblastomas become cancerous, which is why close monitoring may be recommended.
• Survival rates depend on numerous different factors, such a tumor’s size, location, and disease characteristics, as well as inherited conditions such as von Hippel-Lindau (VHL) disease.
• Receiving a diagnosis of hemangioblastoma can present challenges that require supportive networks, lifestyle changes, and cultivating resilience throughout one’s journey of diagnosis and treatment

• National Institutes of Health (NIH): Hemangioblastoma
• Cancer Research UK: Hemangioblastoma
• American Brain Tumor Association (ABTA): Hemangioma
• VHL Alliance