PATIENT EMPOWERMENT

>> ​Advocating for the Ocular Melanoma Medical Care You Want

As a reference, there is a one-page printable list of "Standards of [Medical] Care Specific to Ocular Melanoma." These are 20 standards, proposed by the authors, which "patients should expect" and that serve "as a basis for discussion and refinement" when advocating for yourself in any healthcare system. The link will take you directly to this list, which is Table 3 in "The Patient’s Experience of Ocular Melanoma in the US: A Survey of the OM Foundation; Authors: Afshar, Deiner, Allen, and Damato; In Ocular Oncology and Pathology, 2018.

Also, the following videos:

• "Why Advocacy is Important for Patients with Ocular Melanoma" (Melody Burchett, A Cure in Sight Founder; 2024 AOMA Summit; 25 minutes)
• "Self-Advocacy as an Ocular Melanoma Patient" (Molly Vocino, LCSW and Monika Zurowski, BSW; 2023 CURE OM Symposium; 45 minutes)
• "Self-Advocacy for Ocular Melanoma Patients in a Medical Setting" (Amanda Sisco, CURE OM Advocate; 2020 CURE OM Symposium; 30 minutes)

>> ​Discussing Your Ocular Melanoma 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? See these resources for suggestions: 

• CURE OM has created a one-page handout of "Questions to Ask Your Doctor" — for Primary OM and for Metastatic OM.
• A list of "Questions to Ask" is also available in most of the Ocular Melanoma Guides for Patients shown at the beginning of EyeMelanoma.org's Diagnosis and Treatment webpage.
• Video: "How to Prepare for Your Ocular Oncology and All Doctor Visits" (Dr. Tara McCannel; Finding Your Way with Ocular Melanoma Podcast; February 2025; 15 minutes).

>> ​Seeking a Second Opinion for Ocular Melanoma Treatment Options

The American Cancer Society tells patients that ""As you face cancer treatment, it’s normal to wonder what another cancer doctor might say about your case. Could they provide more information or a different treatment plan? Getting a second opinion can help you feel better about your treatment plan." On ACS' Seeking a Second Opinion webpage, topics include: "How to Talk to Your Doctor About Getting a Second Opinion," and "What to Expect When Getting a Second Opinion."

Also, the following video:

•  "Ocular Melanoma: Getting a Second Opinion" (Dr. Tara McCannel; Finding Your Way with Ocular Melanoma Podcast; May 2024; 15 minutes).

​>> Becoming More Tech-Savvy Online for Your Healthcare Needs

Patient Empowerment Network's no-cost 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 "Navigating Your Patient Portal." 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

Cancer Nation (previously the National Coalition for Cancer Survivorship) explains that "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 no-cost cancer care plan templates.

>> Managing Side Effects of Cancer Treatment  

"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 from the Cancer Support Community's printable guide on "Coping with Side Effects."

>> Obtaining Palliative Care to Improve Quality of Life During Treatment

"Palliative care is specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness. [...] It will help you carry on with daily life. It will improve your ability to go through medical treatments. And it will help you to match your goals to your treatment choices." Learn more through the Center to Advance Palliative Care's answers to FAQs. 

Also, the following videos: 

• "Palliative Care Versus Hospice Care: What's the Difference" (Suzanne O'Brien, RN; 2023 Interview by A Cure in Sight; 45 minutes)
• "Palliative Care and Hospice Care in Ocular Melanoma — When to Call Who?"  (Palliative Care Physician Ted Dropcho; 2023 A Cure In Sight Conference; 55 minutes )
• "Considerations for Palliative Care and Hospice Care" (Jennifer Drew, LCSW; 2020 A Cure In Sight Conference; 50 minutes)

>> Protecting Yourself Against Health Fraud Scams

"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." The U.S. Food and Drug Administration provides a health fraud products database, warnings, and informational articles for consumers. (Also available in Spanish.) 

​>> Creating Advance Directives

National Hospice and Palliative Care Organization's CaringInfo.org website "provides no-cost advance directives [Healthcare Surrogate and Living Will forms] and instructions for each state that can each 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, the following video: "Advance Care Planning" (Bonnie Herrmann, LCSW; 2021 Ocular Melanoma Support Alliance meeting; 55 minutes)

​>> Discussing Medical and End-of-Life Care Wishes

"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." Topics of the no-cost downloadable guides 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." 

​>> Dealing with Your Job and Deciding Whether to Work

"CancerAndCareers.org empowers and educates people with cancer to thrive in their workplace, by providing expert [no-cost] advice, interactive tools, and educational events." The website's "At Work" tab includes sections such as "Where to Start [in dealing with your current job]" and "Legal & Financial: What do you need to know about your rights in the workplace?" There is another tab that is all about "Looking for Work." (Also available in Spanish.)

>> Navigating Cancer Rights in Employment, Insurance, and Finances

Disability Rights Legal Center, through its nonprofit Cancer Justice Program, provides a "Patient Legal Handbook," plus the "Cancer Justice Helpline if you or a loved one is impacted by cancer and needs legal assistance" at 1-866-843-2572 (toll-free).

Triage Cancer, through its nonprofit Legal & Financial Navigation Program, "provides individuals diagnosed with cancer, caregivers, and health care professionals with free one-on-one help in the areas of health insurance, disability insurance, employment, finances, medical decision-making, estate planning, and more. [...] Triage Cancer does not provide financial assistance or legal representation." Other links in the resources tab and the materials tab of their website go to "Cancer Rights Guides," "State Laws" database, and "Cancer Finances" toolkit.

Also, the following videos: 

• "Navigating Health Insurance" (Joanna Morales, CEO of Triage Cancer; 2022 A Cure in Sight Conference; 35 minutes)
• "Navigating Health and Disability Insurance" (Joanna Morales, CEO of Triage Cancer; 2021 A Cure in Sight Conference; 80 minutes)