Share with others! EyeMelanoma.org gets you quickly to the info & resources you need
Share with others! EyeMelanoma.org gets you quickly to the info & resources you need
Patients and loved ones will find tools on this page that focus on empowerment and self-care after an Ocular Melanoma diagnosis:
>> Advocating for the Ocular Melanoma Medical Care You Want
The authors of the 2018 medical journal article entitled "The Patient’s Experience of Ocular Melanoma in the US, which reports on survey findings by the Ocular Melanoma Foundation, propose "20 standards of care for patients with ocular melanoma as a basis for discussion and refinement." [This printable list can be found on the 7th page of the article, which is labeled as page 286 – table 3).]
Also:
>> Discussing Your OM Diagnosis and Treatment Options With Your Doctors
Writing down in advance what you want to discuss can help lower your stress level. Need some help getting started? Want to make sure you haven't missed an important topic?
>> Seeking a Second Opinion for Ocular Melanoma Treatment Options
The American Cancer Society tells patients that "When you’re facing cancer treatment, it’s normal to wonder if another doctor could offer more information or a different treatment option. [...] Getting a second opinion can help you feel more sure about your diagnosis and treatment plan." On ACS' Seeking a Second Opinion webpage, topics include: "Why Get a Second Opinion?," "How to Talk to Your Doctor About Getting a Second Opinion," and "The Second Opinion Process: What to Expect."
Online support resources offering direct communication with others after an ocular melanoma diagnosis — including Facebook support groups, peer-to-peer support programs, phone helplines, and online support group meetings — have been compiled on EyeMelanoma.org's Personal Support webpage.
Listed below are even more opportunities to support your mental health.
>> Watching Video Presentations on Mental Health Topics Developed Specifically for the Ocular Melanoma Community:
>> Listening to Personal Experiences of and Suggestions from People Living with Ocular Melanoma:
A Cure In Sight's The Eye Believe Podcast
In The Eye Believe Podcast, there are numerous mental health-related interviews and presentations with patients and mental health professionals who "share stories and raise awareness for OM patients and their families through insights in living with ocular melanoma." (Link has been presorted on ListenNotes.com to display the most recent podcast first.)
>> Learning about Individual and Family Mental Health Counseling Options:
Information on Counseling from the American Cancer Society
"It is normal to need some extra help when you’re dealing with cancer. In fact, studies show that people with cancer who have social and resource support report better quality of life. Psychosocial support can include counseling, education, spiritual support, group support, and other services."
>> Creating No-Cost Private Webpages for Social, Emotional, and Practical Support from Friends and Family:
On both of the websites below, you can choose from features like documenting your journey, providing updates to others, and coordinating needs in a help calendar for rides, meals, childcare, etc. You can select who sets up and updates any of your webpages.
"Free, professional support services for parents, children, and adolescents affected by cancer, as well as information about helping children understand cancer and additional resources [...] All services, offered by telephone, online, and face to face, are completely free of charge." Their booklet includes "Talking About Diagnosis, Treatment, and Prognosis" and "Keeping Lines of Communication Open."
Topics on website include "Talking with Children About Cancer," "Questions Parents Often Ask," "What Children Want to Know," "How to Explain Treatment," "How to Help Children Cope," "Stress Warning Signs in Children,"
and "Talking with Your Child's School."
"Parenting Through a Cancer Diagnosis" (Carissa Hodgson, Oncology Social Worker; 2025 Eye Believe Podcast with Danet Peterson; 55-minute video format)
"Talking to and Supporting Children Around Cancer in the Family"
(Dr. Caroline Leek; 2023 OcuMel UK Conference; 30-minute video)
"How to Talk to Your Children About Your Cancer Diagnosis"
(Dr. Caitlin Stone; 2022 A Cure In Sight Conference; 45-minute video)
"When a Parent Has Cancer: Explaining Cancer and Treatments to Children"
(Jean Hartford-Todd, Certified Child Life Specialist; 2020 CURE OM Symposium; 35-minute video)
>> Becoming More Tech-Savvy Online for Your Healthcare Needs — Patient Empowerment Network
PEN's online course, called Digitally Empowered, includes topics such as "Navigating Healthcare Resources Online," "The Social Media Experience," "Navigating Your Health with Electronic Devices," "Using Telemedicine," "Your Digital Safety," and Tips for Online Re(Search)." "You can return any time and use your login to pick up where you left off. (Also available in Spanish.)
>> Creating a Cancer Care Plan — National Coalition for Cancer Survivorship
"Cancer Care Plans should have three parts: Treatment Plan (to discuss before you begin treatment), Treatment Summary (to be provided once you transition off of active treatment), and Follow-Up Survivorship Care Plan (to help map out your follow-up care when you have completed treatment)." Information includes Care Plan templates.
>> Managing Side Effects of Cancer Treatment — Cancer Support Community
"Before making a decision about your treatment, it is helpful to know what the common short-term and long-term side effects are and how to manage them. Everyone experiences treatment and side effects differently, but it can help to feel prepared." Learn more through this printable guide.
>> Obtaining Palliative Care to Improve Quality of Life During Treatment — Center to Advance Palliative Care
"This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment." Learn more through this printable Q&A handout.
Also:
>> Protecting Yourself Against Health Fraud Scams — U.S. Food and Drug Administration
"Health fraud scams refer to products that claim to prevent, treat, or cure diseases or other health conditions, but are not proven safe and effective for those uses." Page links go to safety alerts and recalls as well as to topics such as "tainted products marketed as dietary supplements" and info on "how to report problems." (Also available in Spanish.)
>> Creating Advance Directives — National Hospice and Palliative Care Organization
NHPCO's CaringInfo.org website "provides free advance directives [Healthcare Surrogate and Living Will forms] and instructions for each state that can be opened as a PDF. [...] Every state allows you to choose someone to make decisions about your healthcare when you are not able to make decisions for yourself."
Also: "Advance Care Planning" (Bonnie Herrmann, LCSW; 2021 Ocular Melanoma Support Alliance meeting; 55-minute video)
>> Discussing Medical and End-of-Life Care Wishes — The Conversation Project
"The Conversation Project is a public engagement initiative of the Institute for Healthcare Improvement. Our goal is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected." All guides are available to download and print for free. Topics include "Your Conversation Starter Guide," "Your Guide to Choosing a Health Care Proxy," "Your Guide to Being a Health Care Proxy," "Your Guide for Talking with a Health Care Team," and "What Matters to Me Workbook."
>> Finding or Keeping Your Job — CancerAndCareers.org
"Cancer and Careers empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools, and educational events." (Also available in Spanish.)
>> Navigating Cancer Rights in Employment, Insurance, and Finances — Triage Cancer
"Free one-on-one help in the areas of health insurance, disability insurance, employment, finances, medical decision-making, estate planning, and more" through its Legal and Financial Navigation Program. And much more information can be found under the resources tab and materials tab, such as "Cancer Rights Guides," "State Laws" database, and "Cancer Finances" toolkit.
Also: "Navigating Health Insurance" (Joanna Morales, CEO of Triage Cancer; 2022 A Cure in Sight Conference; 35-minute video) and "Navigating Health and Disability Insurance" (Joanna Morales, CEO of Triage Cancer; 2021 A Cure in Sight Conference; 80-minute video)
>> Resolving Cancer-Related Legal Issues — Cancer Legal Resource Center
"CLRC is the only national dedicated center for patients, survivors, caregivers, and health care professionals to access confidential cancer-related legal information and resources at no cost [...] on matters like maintaining employment through treatment, accessing healthcare and government benefits, taking medical leave, and estate planning."
New information added to this webpage: March 2, 2025
Links to all external sites re-verified on this webpage: November 6, 2024
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