Questions to Ask About Uveal Melanoma Treatment

This page is for adults with melanoma inside the eye (uveal melanoma) and the people helping them. A short section near the end covers retinoblastoma, a different eye cancer in children.

For melanoma inside the eye, the tumor's height and the width of its base are measured first. NCI's checklist also records where it sits: the iris, the ciliary body, or the choroid at the back.

The Collaborative Ocular Melanoma Study set the size bands NCI still uses. Small means 1.0 to 3.0 mm in height with a base of 5.0 to 16.0 mm. Medium means 3.1 to 8.0 mm in height with a base no wider than 16.0 mm. Large means over 8.0 mm in height, or a base over 16.0 mm when the height is at least 2.0 mm.

Ask for your numbers in millimeters. Ask which band they put you in.

NCI is direct about medium tumors. Radiation that spares the eye, given by plaque or by external beam, is the preferred option for most people.

For large tumors, NCI describes removing the eye as the standard option. NCI also names it as standard when the tumor causes severe glaucoma (high pressure inside the eye) or grows into the optic nerve.

The list for medium tumors is longer than many people expect. Plaque radiation. Charged-particle beam radiation at specialist centers. Removal of part of the eye wall. Plaque treatment combined with laser or heat treatment. Removing the eye is used when the tumor has spread outside it, among other reasons.

A plaque is a small disc of radioactive material placed on the outside of the eye over the tumor. NCI lists the isotopes used, and says iodine 125 is probably the most common.

The trade is real. NCI's clinician summary reports that within 10 years of plaque treatment, 68% of patients had poor vision (20/200 or worse). Older age, larger tumors, diabetes and tumors near key structures raised the risk.

Ask what your sight is likely to be after treatment.

For uveal melanoma, NCI's pathology checklist includes a gene expression profile reported as class 1 or class 2. It also records chromosome results, especially loss on chromosome 3.

NCI's patient page says a biopsy is rarely needed to diagnose intraocular melanoma. Its clinician summary lists fine needle sampling as one way to get tissue for molecular tests. Whether testing is right for you is a question for the ocular oncologist (eye cancer specialist).

Retinoblastoma is a different disease with different aims, and nothing above this heading applies to it. The size bands, the plaque decisions and the biopsy question all come from adult uveal melanoma. Ask which treatments could save the eye and the sight, and ask about genetic testing for the child and the family. NCI says genetic counseling is part of care for families, whatever the child's presentation.

• How tall is my tumor, and how wide is the base?
• Is it small, medium or large by those measures?
• Where does it sit, and how close is it to my optic nerve?
• Which options are open to me, and what does each cost my sight?
• Will I keep useful vision in that eye?
• For a uveal melanoma, would tissue testing for the gene and chromosome tests help in my case, and when would it be done?
• How often will this eye be checked afterward, and by whom?

Cancer Staging and Biomarker Testing explain the terms used in an eye cancer treatment discussion. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor help you prepare for the eye cancer appointment itself.

These questions were drawn from current patient guidance for eye cancer (uveal melanoma; retinoblastoma in children):

• NCI PDQ — Intraocular (Uveal) Melanoma Treatment (Patient Version)
• NCI PDQ — Intraocular (Uveal) Melanoma Treatment (Health Professional Version)
• NCI PDQ — Retinoblastoma Treatment (Health Professional Version)