Oncologic Follow-up

It cannot be stressed enough that you see an experienced medical oncologist and then follow up with them regularly. Hopefully, good follow-up for you will be like good insurance - you won't ever really need it, but it is there just in case.

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.

As with any education and treatment regimen, you are your own best advocate. You need to talk to as many doctors as possible and find a good medical oncologist who you trust and who is knowledgeable about OM. Ask them how many cases they see per year if you’re unsure.

Surveillance Schedule

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.  So while there are no approved guidelines for specific follow-up, your oncologist will likely recommend blood work and scans at some sort of regular interval such as every six to nine months.

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.

Some patients have reported having an ultrasound or MRI of the liver 1-2x/year for at least the first 1-5 years following plaque treatment with blood work and then possibly 1x/year thereafter. And again, make sure it is a trusted oncologist following these scans and not just your ophthalmologist.

These liver-focused surveillance techniques include:

  • Liver function tests
  • Abdominal ultrasound
  • Abdominal magnetic resonance imaging (MRI)
  • CT scan
  • PET scan

Anecdotally with the OMF forums, 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.