Learn about clinical trials and research opportunities in Diagnosis/Treatment section
Learn about clinical trials and research opportunities in Diagnosis/Treatment section
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)
>> American Society of Clinical Oncology's Eye Cancer Guide
>> American Society of Retina Specialists' Intraocular Melanoma Facts Sheet
>> CURE OM's Ocular Melanoma Patient Guide
>> Melanoma Focus' Uveal Melanoma Guide [for United Kingdom]
>> Melanoma Network of Canada's Guide to Uveal Melanoma (Also in French.)
>> National Cancer Institute's [Adult] Intraocular (Uveal) Melanoma Treatment Guide — Patient Version (Also in Spanish. Also as a Health Professional Version.)
>> National Cancer Institute's Childhood Intraocular (Uveal) Melanoma Treatment Guide — Patient Version (Also in Spanish. Also as a Health Professional Version.)
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 uveal melanoma 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 details about this "first and only FDA-approved therapy" for metastatic uveal melanoma patients on KIMMTRAK website.
Free online registration is required the first time you access these guidelines. Select 'create account' 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 32 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."
In-office imaging tests of the eye may include "Fundus Photography, Optical Coherence Tomography, Ultrasound, Fluorescein Angiography, and Transillumination." [...] "Imaging tests may be used to find out whether the cancer has spread. [These may include] Ultrasound, CT Scan, MRI, or PET Scan" of other body parts. Read brief explanations about each test from the American Society of Clinical Oncology.
Learn about the role of each eye imaging test: "1) At baseline to aid in diagnosis, identify risk factors for malignant transformation, and provide measurements for treatment planning and 2) at follow-up to assess treatment response, identify recurrence, and detect treatable complications." View video (Presenter: Dr. Heinrich Heimann, OcuMel UK webinar, 30 minutes, September 2021).
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 test is further discussed in an interview with Impact Genetics' Jamie Jessen (30-minute podcast; August 6, 2020; Presented by A Cure in Sight)
Blood Testing
(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).
New information added to this webpage: February 23, 2023
Links to all external sites re-verified on this webpage: February 23, 2023
Email: Erica@EyeMelanoma.org
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