What is Haemangioblastoma?
Haemangioblastoma is a rare type of tumour that affects the central nervous system. The most common places for these tumours to occur include the brain, spinal cord and retina. Haemangioblastomas account for around 2% of all brain tumours, making them a very rare form of cancer, especially when brain tumours account for 1.8% of all cancers. Some people develop hemangioblastomas due to preexisting conditions such as von Hippel-Lindau syndrome, whereas others will develop it unexpectedly.
A haemangioblastoma is a slow-growing and sometimes benign (non-cancerous) tumour. Upon diagnosis, doctors will try to determine the grade of the tumour. The grade gives an indication of how slowly or quickly the tumour may grow. As hemangioblastomas enlarge, they can press on the brain, causing neurological symptoms such as headaches, sensory loss and coordination problems. Fortunately, surgery is highly effective against hemangioblastomas and usually cures the condition.
Haemangioblastoma Causes & Risk Factors
A risk factor is something that increases the likelihood of Haemangioblastomas occurring. Risk factors do not guarantee that it will happen, and cancer can still occur in patients with no identified risk factors. About one-quarter of cases are associated with von Hippel-Lindau (VHL) syndrome. VHL syndrome is an inherited condition which causes the abnormal growth of tumours throughout the body.
Haemangioblastoma can occur at any age but is most common between the ages of 20 and 40. Especially if it is associated with VHL syndrome.
Diagnosis and Symptoms of Haemangioblastoma:
Haemangioblastoma is usually diagnosed via a CT or MRI scan on the brain. This allows doctors to locate and learn about the tumour forming inside the brain or spinal cord. Doctors may perform other tests first, such as examination of the eye’s optic nerve to determine if the brain is under pressure.
Below are some of the most common symptoms associated with Haemangioblastoma. An early diagnosis usually allows for more effective treatment. For this reason, it is important to see a doctor if you have any concerns.
- Headaches – Haemangioblastoma can cause increased pressure on the brain called hydrocephalus. This results in painful headaches. These headaches may be accompanied by nausea and vomiting.
- Problems with balance and coordination Increased pressure can also affect motor skills, leading to a decline in balance and coordination.
- Problems with eyesight – Haemangioblastoma can affect eyesight, especially if the tumour is located around the retina. Sufferers may experience problems with vision, as well as unexpected jerky eye movements.
- Back or neck pain – If the tumour is located in the spinal cord, it can cause acute pain in the back and neck.
- Numbness – Spinal cord tumours can also lead to loss of feeling or weakness throughout the body, commonly in the arms and legs.
Treatment for Haemangioblastoma:
Surgery:
Surgery is the main form of treatment for Haemangioblastoma and is used whenever it is possible. During surgery, doctors will attempt to remove the tumour from the brain or spinal cord. The aim of surgery is not only to remove the tumour, but to prevent it from growing back over time.
Following surgery, patients should continue to visit their doctor for routine check-ups and imaging on the brain. This allows doctors to act quickly if the tumour begins to grow again.
Sometimes, surgery is not an option for Haemangioblastoma. This can happen when the position of the tumour is too difficult to reach, making surgery unsafe. Tumours located on the brain stem are dangerous to operate on and an alternative to surgery will be recommended instead.
Radiation therapy:
Radiation therapy is the use of radiation to target and destroy cancer cells. It can be used as an alternative to surgery when a tumour is inoperable, or as a follow-up to surgery if surgeons are unable to remove the entire tumour. During radiation therapy, high-energy x-rays are aimed at the tumour. This damages the tumour and prevents it from growing.
Radiation therapy does cause side effects, which include:
- Fatigue and tiredness.
- Loss of hair around the targeted area.
- Skin irritation around the targeted area.
Steroids:
Your doctor may recommend steroids to control the swelling of the tumour. They may be prescribed before or after surgery, or during radiation therapy. Steroids may cause side effects, which include indigestion, weight gain or slight changes in mood.
What support can we give for Haemangioblastoma?
Haemangioblastoma is a rare cancer, meaning it is not as well known as other forms of cancer. Without a Ribbon is an Australian organisation that provides support for individuals who suffer from rare cancers. We provide a designated platform for Warriors to obtain information specific to their Rare Cancer. We also provide annual opportunities for our Warriors to meet and learn from each other.
If you suffer from a rare cancer such as Haemangioblastoma, we can help and support you through your journey thanks to the generous donations we receive. Click the link below to sign up and become a Warrior today!
You can help us with your donation:
Without a Ribbon is a charity that works hard to aid those who suffer from rare cancers. You can help our cause in a variety of ways:
Donations – Without a Ribbon is grateful for every donation received. Giving to Without a Ribbon helps us to provide ongoing support, organise the annual gathering and subsidise the costs of our Warriors attending these conferences.
Sponsorship – If you wish to sponsor our charity, please contact us using this form.
Volunteering – We are always looking for volunteers to help with different aspects of running our charity. If you are looking for volunteer work, please feel free to contact us.
