A diagnosis of ocular melanoma (also known as uveal melanoma) can leave you and your loved ones feeling uncertain, anxious and overwhelmed. There are important treatment decisions to make, emotional concerns to manage, and insurance and financial paperwork to organize, among other practical concerns.
It is helpful to keep in mind that there are many sources of information and support for people coping with ocular melanoma. By learning about this diagnosis and its treatment options, communicating with your health care team, and surrounding yourself with a support network, you will be better able to manage ocular melanoma and experience a better quality of life.
Melanomas begin in cells called melanocytes. Melanocytes produce the skin pigment called melanin which gives skin its color. While the majority of melanomas form on the skin, melanocytes are also present in other tissues of the body. When melanoma forms in the eye, it is known as ocular melanoma. Ocular melanoma is the most common form of eye cancer in adults, and it is estimated that every year 2,000 adults living in the United States will be diagnosed with ocular melanoma.
Questions to Ask Your Health Care Team
Because ocular melanoma is a complex condition with complex treatment options, good communication between you and your health care team is key. Your oncologist, nurses, and other members of your health care team work together to treat your ocular melanoma. When your health care team talks about your diagnosis and treatment, ask questions about anything you don’t understand. Here are few questions you may want to ask your health care team.
Should I see a doctor that specializes in ocular melanoma? It is common and even encouraged for patients to request second opinions from a specialist. To find an ocular melanoma specialist, ask your primary care doctor or oncologist to recommend one, or contact a nearby cancer center. For information about hospitals, cancer treatment facilities, and surgical centers contact:
- The Ocular Melanoma Foundation website’s provides a ‘Doctor Finder’ at www.ocularmelanoma.org/doctorfinder.htm
- The American Society of Clinical Oncology’s website, Cancer.Net, offers a “Find an Oncologist” database that allows you to search by many different criteria, including area of specialty, board certification, and location.
- The National Cancer Institute (www.cancer.gov or 800-4-CANCER) publishes a list of NCI Designated Cancer Centers.
What is my recommended treatment plan? Depending on the information that your health care team has learned about your melanoma, your treatment options may include radiation.
Since I’ve been diagnosed, I’ve been overwhelmed. How can I better cope with my diagnosis? A cancer diagnosis turns a person’s world upside down emotionally and physically. Your team of doctors, nurses and social workers are valuable sources of support as you cope with a cancer diagnosis. Oncology social workers are licensed professionals who counsel people affected by cancer, providing emotional support and helping people access practical assistance. CancerCare’s oncology social workers provide individual counseling, support groups and locate services face-to-face, online or on the telephone, free of charge. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).
Read CancerCare’s fact sheet, “‘Doctor, Can We Talk?’: Tips for Communicating With Your Health Care Team,” to learn how you can communicate more effectively with your health care team.
Tips for Managing the Cost of Treatment
Know Your Insurance Coverage. Understand ahead of time which treatments and medical services your insurance covers, and whether you are still responsible for any out-of-pocket expenses. A good first step is to contact your insurance company using the telephone number found on the back of your insurance card. For more information about insurance, read CancerCare’s fact sheets titled, “Understanding Your Insurance Coverage” and “Coping with Cancer When You’re Uninsured.”
Learn how financial assistance programs can help you. There are many organizations that provide help with medical billing, insurance coverage, and reimbursement issues. There is also financial assistance available to help people who cannot afford the cost of their medications. Good places to start your research are the websites of the Cancer Financial Assistance Coalition (www.cancerfac.org) and the Partnership for Prescription Assistance (www.pparx.org).
CancerCare’s fact sheets titled, “Sources of Financial Assistance” and “Tips forManaging the Cost of Cancer” provides more information about seeking financial help. Another resource is CancerCare’s A Helping Hand (www.cancercare.org/helpinghand). This is a searchable, online database of financial and practical assistance available for people with cancer. This comprehensive online tool features up-to-date contact information and descriptions for hundreds of national and regional organizations offering financial help to people with cancer. You can search by diagnosis, zip code and type of assistance.