You or your loved one just received news that you never expected.
Ocular melanoma (also known as uveal melanoma) is a rare cancer and many of us have not heard of it prior to diagnosis. We are here to help you navigate your diagnosis but most of all we want you to know you are not alone. There is a large community of us here to help you.
Initial diagnosis
You may have had some initial symptoms that brought you to your eye doctor or you might not have had any. Some common symptoms are
- Blurred vision
- Loss of visual field
- Irritation and pain
- Floaters
- Redness
- Pressure
- Change of appearance
The following is a guide to help you get through your first few steps. The initial steps are important and need to be discussed with your physician. Be prepared for your visits. Bring any medical records that your doctor has requested. Bring a snack, water and a sweater with you. The offices can be cold and you could be there for many hours.
Once your Physician has told you that you have ocular melanoma you will go through a series of tests.
These are tests you most likely never had before. They are important to learn all the facts about your tumor. You might receive some or all of these tests.
- Dilated comprehensive eye exam – used to see the inside of the eye and determine that you have a growth in your eye
- Gonioscopy (using a lens to view the angle between iris and cornea; with photos)
- Autofluorescence angiography
- Optical Coherence Tomography (OCT)
- Transillumination
- Retinal Fluorescein Angiography
- Ultrasound biomicroscopy (UBM)
- Biopsy
- MRI
Once your diagnosis is confirmed by your Ocular Oncologist, it’s a good time to get your treatment team together.
Your Ocular Oncologist might recommend a Medical Oncologist for your follow up care. It is also helpful to contact a Cancer Therapist to help you deal with your new diagnosis. Your Physician team may have a recommendation for you. Support groups are also helpful and can be found at your local cancer center, on Facebook, and from cancer organizations. See our resource tab for more information.
Scanning for distant disease might be done before or after your treatment and continue regularly depending on your biopsy results.
- MRI
- CT Scan
- PET Scan
Consider a biopsy of your tumor just prior to treatment.
This is a very critical step, as you may ask for an additional fresh sample to be sent by overnight express shipment for special “molecular genetic testing” to help in determining the risk of metastases. Biopsies are considered safe and have been shown to not increase your risk of metastatic disease. A biopsy can help guide your follow up care, treatment planning and any adjuvant treatment or clinical trials your might want to do. It can be scary to think about your results but they are just a guide for you, not a guaranteed outcome. Also, advanced molecular genetic testing can help identify specific genes involved in your tumor cells which might be targeted by drug therapies in future clinical trials. You will receive your test results either from your doctor or directly from the lab mailed to your home. Your Ocular Oncologist will be able to tell you how you will receive your results. See our tab Tumor & Biopsy for more information on biopsies.
Know the size and information about your tumor.
The more you know, the better you can work through your diagnosis.
Small 1.0-2.5mm in height; greater than 5mm at the base
Medium 2.5 – 10mm in height; less than or equal to 16mm at the base.
Large greater than 10mm in height; greater than 16mm at the base
Based on the size of your tumor, location, medical history, status of the other eye and treatment options close to you, you will be offered a treatment that is right for you. If your tumor is too large to treat, enucleation might be the best option. Treatment options include:
- Radiation Therapy
- Proton Beam
- Brachytherapy (radiation) plaque
- Enucleation
- Transpupillary Thermotherapy or TTT
- Photon Beam
- Photodynamic Therapy or PDT
Side effects of radiation treatment can occur.
These will depend on where your tumor is located, size of your tumor and treatment. You may or may not experience side effects but if you do, consult with your physician. Common side effects are
- Double vision
- Loss of vision
- Eyelash loss
- Dermatitis
- Fatigue
- Dry eye
- Glaucoma
- Cataract
- Retinopathy
Helpful hints to get you through your treatments.
If you have plaque treatment they may have to cut some muscles in your eye to get the plaque in place. This can cause discomfort when you move your eyes. Try moving your head not your eyes when reading, watching TV or walking.
Some people are not able to read during treatment and welcome audio books.
Have someone help you if you have to put in drops or ointments.
Your after care visits should not be as long as your initial visits but be prepared to be there for awhile. Follow up care with your Ocular Oncologist will depend on your physician. It is recommended by the NCCN to see you eye doctor every 3 to 6 months for 5 years than every 12 months thereafter.
Follow up for metastasis varies with your class or biopsy results. Consult with your Medical Oncologist for the best plan for you. You may want to ask about all available therapies and drugs in clinical trials.