Learn about clinical trials and research opportunities in Diagnosis/Treatment section
Learn about clinical trials and research opportunities in Diagnosis/Treatment section
Patients and loved ones will find tools on this page that focus on empowerment and self-care after an Ocular Melanoma diagnosis by addressing:
>> Advocating for the OM Medical Care You Want — 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: In "Self-Advocacy for OM Patients in a Medical Setting," Amanda Sisco discusses "insurance claims, treatments, preparation for medical visits, and more." (Nov. 2020 CURE OM Symposium; 30-minute video)
>> Becoming More Tech-Savvy Online for Your Health 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," and "Your Step-By-Step Guide to Using Telemedicine." The self-paced course can be completed in about two hours. (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." This guide on "managing common side effects" is in PDF format.
>> 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: "Differences Between Palliative Care and Hospice Care" (Jennifer Drew, LCSW; Oct. 2020 A Cure In Sight Conference; 50-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. Need some help getting started? Want 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."
Online support resources offering direct communication with others after an ocular melanoma diagnosis — including Facebook groups, discussion forums, peer-to-peer support programs, helplines, and online support group meetings — are compiled on EyeMelanoma.org's Personal Support webpage.
Listed below are even more opportunities to support your mental health.
Learning about individual and family mental health counseling options:
"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?" and "How can I find a counselor?"
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.
Watching video presentations on mental health topics that were developed specifically for the ocular melanoma community:
>> "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)
>> "Caring for the Caregiver" (Molly Vocino, LCSW; Nov. 2020 CURE OM Symposium; 30-minute video)
>> "Coping with Change After Cancer" (Tabeen Urbach, LCSW; Nov. 2020 CURE OM Symposium; 30-minute video)
>> "Coping with Your Diagnosis: Your New Normal?" and "Ocular Melanoma Strikes the Whole Family" (Jennifer Drew, LCSW; Jan. 2023 A Cure In Sight Seminar [50-minute video] and Oct. 2021 A Cure In Sight Conference [55-minute video])
>> "Holistic Medicine and Western Medicine" (Dr. Allen Arnette and Dr. Tara McCannel; Oct. 2020 A Cure in Sight Conference; 40-minute video)
>> "Living Well with Ocular Melanoma: Advocating for Oneself as an OM Patient" (Molly Vocino, LCSW and Monika Zurowski, BSW; April 2023 CURE OM Symposium; 45-minute video)
>> "Living with Ocular Melanoma and Understanding Unmet Needs" (Laura Hope-Stone, psychologist; September 2022 OcuMel UK Conference; 55-minute video)
>> "What To Do in the Waiting Room" and "What We Can Expect of Our Friends After an OM Diagnosis" (Anne Osborn, LMFT; Oct. 2022 A Cure in Sight Conference; 45-minute videos)
>> 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:
(Dr. Caitlin Stone, Clinical Psychologist; Oct. 2022 A Cure In Sight Conference; 45-minute video)
(Jean Hartford-Todd, Certified Child Life Specialist; Nov. 2020 CURE OM Symposium; 35-minute video)
(Tiffany Yang, Certified Child Life Specialist; Sept. 2019 A Cure In Sight Conference; 40-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 Cost 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 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; Oct. 2022 A Cure in Sight Conference; 35-minute video) and "Navigating Health and Disability Insurance" (Joanna Morales, CEO of Triage Cancer; Oct. 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."
>> 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; June 24, 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."
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