What follow-up you receive will depend on a number of factors including; the type of tumour you had, the type of treatment you had, your individual risk of having the cancer spread elsewhere, what is right for your personal circumstances and what your personal preference is.
Most people will have two types of follow-up; ocular (eye) and extra-ocular (body).
Whatever treatment you had, it is likely that your eye (or socket) will need to be monitored for some time afterwards. Some patients continue to attend the eye centres on a biannual or annual basis for many years. Others, such as those who had enucleation, may be referred back to their local hospital once the initial recovery period is over. Whatever ocular follow-up you receive, it is important that you know where to go if you have any questions, or if you develop new symptoms.
There is a huge range of body follow-up (sometimes called “surveillance”) currently being accessed by patients in the UK. It can be confusing for new patients to understand why others are receiving different tests or scans. The uveal melanoma guidelines have helped to provide some clarity on this situation.
The uveal melanoma guidelines recognise that patients who are at a higher risk of developing metastatic disease, should receive 6-monthly liver scans. Usually patients fall into a higher risk category if their tumour was large, or if they had genetic testing which found monosomy 3. If you are not sure whether you are classed as high risk or not, your ocular oncologist is the person best placed to tell you.
The scanning can be with any non-ionising modality. In practice that means ultrasound or MRI. You can read more about these scans on the staging page. There are pros and cons to each modality, and you should speak to your medical/clinical oncologist or liver specialist to discuss which one will be used.
Ultrasound has the advantage that you can find out the result on the day of the test. Doctors believe plain MRI is probably no more accurate than ultrasound, although ultrasound is more operator-dependent.
Some patients have accessed contrast-enhanced or plain MRI with diffusion weighting. This is test that is used to get more clarity when a plain MRI or an ultrasound shows something suspicious. It is also recommended for staging liver disease to assess operability.
Many of our members who access these detailed scans, do so because they believe they may find metastases early and have more time to try different treatments. However, due to a lack of research in this area, there is no evidence to prove there is any survival benefit to finding metastases early. Some treatments, especially liver-directed therapies, have been shown to be more effective on lower level disease. OcuMel UK would welcome and support research in this area in the future.
Your Medical/Clinical Oncologist
One of the most important recommendations from the guidelines is that patients should be given their own medical or clinical oncologist. This is a cancer doctor who is separate from the ocular oncologist who has been dealing with your eye. They should be someone with an interest and experience in ocular melanoma.
Medical and clinical oncologists can offer a holistic approach. They are able to talk about what treatments are currently available should your cancer spread, what are the new upcoming treatments, and if there are any treatments you can have now (called adjuvant treatments).
A medical/clinical oncologist can also help by signposting you to financial support, aids to help you around the home, counselling and local cancer support groups. Having this input can help patients deal with the impact their diagnosis has on them and their friends and family. Without this, patients may feel the cancer side of their diagnosis is given less importance the eye part is.
If you are having scans as part of your extra-ocular follow-up, the oncologist will be the person overseeing it. This means that if something suspicious is found on a scan, there is a direct and quick pathway back to the consultant so the issue can be dealt with quickly. OcuMel UK has found that where scans are devolved to local GPs, this pathway does not always exist and delays can occur.
All patients, irrespective of risk, should have a holistic assessment to discuss the risk, benefits and consequences of entry into a surveillance programme – Recommendation 34, Uveal Melanoma Guidelines
Patients judged at high-risk (see Section 6.3.2) of developing metastases should have 6-monthly life-long surveillance incorporating a clinical review, nurse specialist support and liver-specific imaging by a non-ionising modality.” -Recommendation 35, Uveal Melanoma Guidelines
All patients with a new diagnosis of uveal melanoma should be offered referral to a medical or clinical oncologist with a specialist interest in the disease. -Recommendation 13, Uveal Melanoma Guidelines