Living With OM

Introduction

Ocular melanoma is a lethal disease but many patients go on post-diagnosis to live long and healthy lives. Two commonalities among all of these patients who "buck the trend" of the often discouraging statistics are (i) being a proactive self-advocate and (2) living a healthy lifestyle which can involve a combination of de-stressing, excercise and diet changes.

OMF encourages anyone dealing with OM to take charge of their own treatment and be proactive in scheduling regular follow-ups with their ophtalmologist and oncologist. Knowledge is power.

Metastatic Disease

Metastatic melanoma (also known as stage IV) is a general term for the spreading of cancer beyond its original site. The liver is the most common site of metastasis in ocular melanoma. Among those who develop metastatic disease, 90% of patients develop liver disease. However, ocular melanoma can spread to any organ in the body. After the liver, common sites include the lung, bones and brain. Even though the cancer cells have spread to other parts of the body, since the cells remain melanoma cells, this cancer is called metastatic melanoma.

Approximately 50% of ocular melanoma patients will develop metastatic disease within 15 years of the original diagnosis, and currently there is no cure for metastatic OM.

However, if metastatic disease is found early there are a few localized and systemic treatment options that may extend life expectancy and help improve quality of life for patients.

Surveillance

At the time of diagnosis, metastatic disease will only be seen in about 3% of patients due to the micrometastatic nature of OM. This means that the disease may be present in other parts of the body, but because OM is spread by the bloodstream and not the lymphatic system as with cutaneous melanoma, the 'mets' may be too small or too diffuse to be detected. 

The early metastatic disease can be detected, the more options are generally available. Genetic testing does inform the surveillance plan but there is no clear consensus regarding ongoing monitoring. It is important to speak with your doctors to decide what is right for you.

Because, of the 50% of patients who develop metastatic disease, more than 90% of patients will develop liver metastases, the majority of surveillance techniques are focused on the liver.

These liver-focused surveillance techniques include:
Anecdotally, the most common surveillance regimen is getting scans (typically CT or MRI) every 6 months. Again, though, every situation is unique and OMF encourages each and every patient, regardless of medical background knowledge or budget, to have an open and honest dialogue with their oncologist and to push back and/or ask clarifying questions whenever they feel uneasy.

If you have any questions, feel free to drop us a line. We can put you in touch with other patients or with a preferred oncologist.