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 — primary and metastatic:
>> American Cancer Society's Ocular Melanoma Guide (Downloadable PDFs are located part way down its webpage)
>> Melanoma Network of Canada's Guide to Uveal Melanoma (Also in French.)
2) For patients considering or undergoing surgical eye removal (enucleation), links to additional information and resources, including a patient guide about the procedure, are available on EyeMelanoma.org's Vision-Related Support webpage.
3) Important 2022 update on metastatic treatment options:
1/26/22 — "Immunocore announces U.S. Food and Drug Administration approval of KIMMTRAK® (tebentafusp-tebn) for the treatment of HLA-A*02:01-positive adult patients with unresectable or metastatic uveal melanoma." (Other government approvals include 4/4/22 European Commission; 6/8/22 UK, Australia, and Canada.) See news releases. See details about treatment for patients at KIMMTRAK website.
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."
"The Uveal Melanoma UK National Guidelines have recommended standards of care for all of our patients across the UK. These updated guidelines include recent advances in our understanding of the distinct biology of this disease, assess the evidence for recent improvements in care, and have a renewed focus on patient experience." [...] "The development group is from fields of medical oncology, clinical oncology, radiology, pathology, uveal melanoma science, and patient representation."
"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.
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:
These tests are further discussed in an interview with Castle Biosciences' Dr. Katherina Alsina (20-minute video; May 27, 2022; Presented by A Cure in Sight)
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.)
Videos explaining the parts of the eye and where ocular melanoma can develop:
"Basic Anatomy of the Eye" (5-minute overview)
Presenter: Guilherme Neri Pires, MD; June 2020; Presented by UM Cure 2020 Project
"Understanding the Anatomy of the Eye" (40-minute presentation, including Q&A)
Presenter: Guilherme Neri Pires, MD; July 2019; Presented by OcuMel UK
The Dictionary of Cancer Terms database contains more than 9,000 "cancer and biomedical terms defined in non-technical language." Pronunciation of each term is also provided. (Also available in Spanish.) From the National Cancer Institute.
The Drug Dictionary database contains "technical definitions and synonyms for drugs/agents used to treat patients with cancer. Each drug entry includes links to check for clinical trials." From the National Cancer Institute.
You can find Information on Lab Tests — which are tests performed on a sample of your blood, urine, other bodily fluid, or tissue — in the alphabetized database. Explanations of each test include "What Is Being Tested?," "How Is the Test Used?," "When Is the Test Ordered?," and "What Does the Test Result Mean?" From Testing.com (formerly LabTestsOnline.org).
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