Post diagnosis

 

I have been diagnosed with EHE. Now what?

First, know that you are not alone. There are many other people with EHE and they are readily available through our network and social media sites. Help and support is right there!

It is possible that you have already been diagnosed with multiple tumours. This is not uncommon with EHE. In many cases this may have been described to you as a ‘Grade 3 or 4’ cancer but the traditional grading system is not appropriate for EHE as the number of tumours is not necessarily directly related to the severity of the disease you have. Some of our members with multiple tumours have lived for many years. This is one reason why EHE is unique, and is referred to as being ‘multi-focal’.

Although EHE is very rare, there are specialists familiar with the disease who will be able to help you and your oncology team. Because of the rarity of EHE, it is crucial for patients to find a sarcoma specialist with experience in EHE. See our DIAGNOSIS & TREATMENT page in the PATIENT SUPPORT section for further information.

There are individual patient studies available to read, but no two cases of EHE behave in exactly the same way. It is important to find the most current information, because the more you know the less you will fear your disease. We can help; please see our FURTHER INFORMATION page in this section for sources of information.

 

How will my disease progress?

This is a very difficult question to answer. Haemangioendotheliomas are often indolent (slow growing) but can be aggressive. Almost a third of EHE cases will involve multiple sites which may include sites in lymph nodes, lungs, liver or bones. Where EHE involves tumours at multiple sites some tumours may disappear on imaging but reappear later. Some tumours may grow and subsequently regress. In some cases of EHE, tumours may show no adverse symptoms for many years. Indolent forms of this cancer can however become aggressive, but we do not yet understand why or when this will happen. Surgical intervention can remove tumours successfully but in some cases haemangioendotheliomas may recur at the original site, or nearby. Notably, some cases of haemangioendothelioma have been known to go into spontaneous remission. In summary, the progress of EHE is currently unpredictable.

 

What treatment should I expect?

This is not a question we can answer. From the information above it will be clear that each patient with EHE will have their own unique disease progression. If you have been diagnosed with EHE then you need to ensure that your medical team either have EHE experience or have contacted specialists with EHE experience as we have described above. These specialists together with your own medical team will be able to advice and provide the best treatment plan for your specific circumstances. See our FURTHER INFORMATION page for links to other sites that provide useful information.