On this page, you will find links to many educational resources:
1) The following guides, written for patients and their families, provide information on testing, diagnosis, and treatment of ocular melanoma:
>> Melanoma Network of Canada's Guide to Uveal Melanoma (Also in French.)
2) For patients considering or undergoing surgical eye removal (enucleation), links to in-depth information and resources on enucleation, including a patient guide about the procedure, are available on EyeMelanoma.org's Vision-Related Support webpage.
Free online registration is required the first time you access these guidelines. Select 'register' in the log-in box that appears after selecting the document on the above link's webpage.
"The National Comprehensive Cancer Network is a not-for-profit alliance of 31 leading cancer centers [in the United States] devoted to patient care, research, and education. [...] The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes. [...] The intent of the NCCN Guidelines is to assist in the decision-making process of individuals involved in cancer care — including physicians, nurses, pharmacists, payers, patients, and their families." More on NCCN's guidelines development process.
These guidelines are currently being updated; Information about the update plan is available at Melanoma Focus.
"The United Kingdom (UK) uveal melanoma guideline development group used an evidence-based systematic approach to make recommendations in key areas of uncertainty in the field including: the use and effectiveness of new technologies for prognostication, the appropriate pathway for the surveillance of patients following treatment for primary uveal melanoma, the use and effectiveness of new technologies in the treatment of hepatic recurrence and the use of systemic treatments. The guidelines were sent for international peer review and have been accredited by the UK's National Institute for Health and Care Excellence."
"If your ophthalmologist suspects that you have ocular melanoma, he or she may recommend more tests of the eye. These may include Ultrasound of the Eye, Fluorescein Angiography, Fundus Autofluorescence, and Optical Coherence Tomography."
"Imaging tests may be used to find out whether the cancer has spread. [These may include] Ultrasound, CT Scan, MRI, or PET Scan." After going to linked page, click on a test's name to get a detailed explanation on how the test works.
You can find any of your Blood Tests in the website's alphabetized database. Information on each test includes "What Is Being Tested?," "How Is the Test Used?," "When Is the Test Ordered?," and "What Does the Test Result Mean?"
Uveal Melanoma Tumor Testing
DecisionDx-UM (Gene Expression Profile) Test — "It determines the unique activity of a set of 15 genes [in the uveal melanoma tumor. ...] This test can tell you whether your eye tumor falls into one of three classes, identifying the statistical risk of metastasis over the next five years. [...] Results are being used to develop personalized monitoring plans based on a patient’s metastatic risk." (IMPORTANT: If you are interested in this test, you must inform your ocular oncologist for planning purposes. For this test, the tumor biopsy must be done BEFORE any radiation therapy.)
These additional uveal melanoma tests can be ordered and run with the above test using the same single biopsy:
Uveal Melanoma Tumor Testing
Uveal Melanoma Prognostic Genetic Test — "Multiple methods of testing are used to detect specific genetic abnormalities in eye tumor cells. [...] Genetic results indicate whether your chance of developing metastasis is high or low. Patients and their doctors can use this information to tailor their surveillance and treatment plans." (IMPORTANT: If you are interested in this test, you must inform your ocular oncologist for planning purposes. For this test, the tumor biopsy can be done before any radiation therapy but might not be able to be done after it.)
(This blood test is available from IG and other lab companies.)
BAP1 Tumor Predisposition Syndrome (BAP1-TPDS) Genetic Test — "A discussion with your health care provider is recommended to determine if you or your family member may benefit from genetic testing for BAP1-TPDS." The above link from Impact Genetics provides information on the syndrome. Results are determined from a blood sample. Genetic counselors specializing in hereditary cancer can discuss this and other tests that may be appropriate. (National Society of Genetic Counselors offers a "Find a Genetic Counselor" database. Select 'cancer' in specialization filter.)
Videotaped information explaining the parts of the eye and where ocular melanoma can develop:
"Basic Anatomy of the Eye" (4-minute overview)
Presenter: Guilherme Neri Pires, MD; June 2020; Presented by UM Cure 2020 Project
"Understanding the Anatomy of the Eye" (37-minute presentation, including Q&A)
Presenter: Guilherme Neri Pires, MD; July 2019; Presented by OcuMel UK
Drug Dictionary contains "technical definitions and synonyms for drugs/agents used to treat patients with cancer. Each drug entry includes links to check for clinical trials."
This not-for-profit website does not contain any advertising and does not receive funding/donations of any kind.
Information on this site should not be used as a substitute for professional medical care or advice.
Copyright © 2011–2021. EYEMELANOMA.ORG. All Rights Reserved.