Patients and loved ones will find tools on this page that focus on empowerment and self-care after an OM diagnosis and address:
>> Advocating for the Medical Care You Want — Specifically for OM Patients —
Ocular Melanoma Foundation's Survey of OM Patients
Authors of a 2018 medical journal article that was based on the survey's results "propose a short list of standards of care for patients with ocular melanoma, as a basis for discussion and refinement." In the article's link above, you can go to the 7th page of the article (page 286 – table 3) for a printable list of their 20 suggested standards of care.
Additional resource specifically for OM patients: Amanda Sisco discusses "Self-Advocacy for OM Patients in a Medical Setting" and covers "key pieces of advocacy for patients including insurance claims, treatments, preparation for medical visits, and more" in a 30-minute video from the Nov. 2020 CURE OM Symposium.
>> Becoming More Tech-Savvy Online for Your Health Needs — Patient Empowerment Network
The Digitally Empowered™ 10-module course includes "Identifying Credible Resources and Websites," "Using Social Media to Connect and Learn," "The Benefits of Your Patient Portal," and "How to Use Telemedicine." (Also available in Spanish.)
>> Creating a Cancer Care Plan — National Coalition for Cancer Survivorship
"Cancer Care Plans include your 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 Cancer Care Plan templates.
Also: Creating a Care Plan (Mindy Griffith; Oct. 2020 A Cure In Sight Conference; 39-minute video)
>> Managing Your Cancer Treatment — American Cancer Society
"Learn ways to manage common side effects. Use worksheets to track your medicines and side effects." Includes chemotherapy and radiation side effects tracking worksheets, a pain diary, and a medicine tracking worksheet as well as information on side effects.
>> Obtaining Palliative Care to Improve Quality of Life During Treatment — American Academy of Hospice and Palliative Medicine
"Many people mistakenly believe you receive palliative care only when you can’t be cured. [...] Palliative care may actually help you recover from your illness by relieving symptoms — such as pain, anxiety, or loss of appetite — as you undergo sometimes-difficult medical treatments or procedures, such as surgery or chemotherapy."
Also: "Differences Between Palliative Care and Hospice Care" (Jennifer Drew, LCSW; Oct. 2020 A Cure In Sight Conference; 49-minute video)
>> 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.)
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. Needing help getting started? Wanting to make sure you haven't missed an important topic?
Seeking a Second Opinion
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 its 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."
Support resources offering direct communication with others after an ocular melanoma diagnosis — including Facebook groups, buddy programs, online forums, online support groups, online chats, and helplines — are compiled on EyeMelanoma.org's Personal Support webpage.
Listed below are even more opportunities for support.
To learn about individual and family mental health counseling options:
>> Information on Counseling — from the American Society of Clinical Oncology
"Working with a mental health professional to cope with the challenges that come with a cancer diagnosis, counseling can help you understand your feelings and reactions, and it provides a safe place to talk about your worries." Extensive information includes "What kinds of counselors are there? How can I find a counselor?"
To create private webpages at no cost for "social, emotional, and practical support from friends and family":
On both of these free 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 the pages.
>> Cancer Support Community's MyLifeline.org
To watch video presentations relating to mental health that were developed specifically for the OM community:
>> "Ocular Melanoma Strikes the Whole Family" (Jennifer Drew, LCSW; Oct. 2021 A Cure In Sight Conference; 55-minute video)
>> "Adjusting to Vision Loss: Living the Glass Half Full" (Wendy Olson, vision rehab therapist, and Rick Hart, assistive technology instructor; Oct. 2021 A Cure in Sight Conference; 50-minute video)
>> "Coping with Change After Cancer" (Tabeen Urbach, LCSW; Nov. 2020 CURE OM Symposium; 30-minute video)
>> "Scanxiety" (Rachael Williams, counselor; Nov. 2020 CURE OM Symposium; 30-minute video)
>> "Holistic Medicine and Western Medicine" (Dr. Allen Arnette and Dr. Tara McCannel; Oct. 2020 A Cure in Sight Conference; 40-minute video)
>> "Caring for the Caregiver" (Molly Vocino, LCSW; Nov. 2020 CURE OM Symposium; 30-minute video)
>> "Thrivorship" and "Tools and Techniques for Emotional Times" (Anne Osborn, LMFT; Sept. 2019 A Cure in Sight Conference; 60-minute video and 40-minute video)
>> "The Psychological Impacts of an Ocular Melanoma Diagnosis" and "Living with Ocular Melanoma and Coping with Liver Surveillance" (Laura Hope-Stone, psychologist, July 2019 OcuMel UK Patient Conference; 35-minute video and 40-minute video)
>> "What Self-Compassion Really Looks Like and Why It Matters" (Rachael Williams, counselor; July 2019 OcuMel UK Patient Conference; 50-minute video)
>> Also, see OM video links in the Talking with Children section below.
"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."
These presentations have been geared toward a diagnosis of ocular melanoma:
"When a Parent Has Cancer: Explaining Cancer and Treatments to Children" (Jean Hartford-Todd, CCLS; Nov. 2020 CURE OM Symposium; 36-minute video)
"Talking to Your Kids About Cancer" (Tiffany Yang, CCLS; Sept. 2019 A Cure In Sight Conference; 38-minute video)
>> 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.)
>> Managing the Costs of Cancer Care — American Society of Clinical Oncology Topics in this free online booklet include "Health Insurance," "Organizing Your Financial Information," and "Questions to Ask." (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 Navigation Program. And many items are under the resources and materials tabs, such as "Cancer Rights Guide," "A Toolkit for Navigating Finances After Cancer," and "State Laws."
Also: "Navigating Health and Disability Insurance" (Joanna Morales, CEO of Triage Cancer; Oct. 2021 A Cure in Sight Conference; 84-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."
>> 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."
>> Discussing Medical and End-of-Life Care Wishes — The Conversation Project
"A public engagement initiative with a goal that 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."
New information added to this webpage: December 2, 2021
Links to all external sites re-verified on this webpage: October 7, 2021
Email: Erica@EyeMelanoma.org
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