Coping With Ocular Melanoma (OM): A Toolbox

By Anne Osborn and Bertil Damato, MD

Ocular Melanoma, the most common of the cancers of the eye is a devastating disease. Patients and family members will benefit from the Toolbox contained within when first beginning the journey towards recovery. The bulk of the information is psychological tools one may implement, easily as one navigates the path of testing, getting results and counter-balancing what may lay ahead with treatment options. Both the patient and the care providers may benefit from reading recovery options.
The book is written from both a personal standpoint as well as decades of developing tools for others, especially emergency personnel.
Find out what may be of help to you or your family member inside this book.

• Language: English
• Publisher: BookBaby
• Release date: Oct 15, 2018
• ISBN: 9781543947076

Book preview

Copyright 2018 : Coping With Ocular Melanoma (OM): A Patient’s Toolbox

Print ISBN: 978-1-54394-706-9

eBook ISBN: 978-1-54394-707-6

Information in Coping With Ocular Melanoma (OM): A Patient’s Toolbox is provided for awareness and education. The benefits and efficacy of ideas presented are based on the opinion of the author. The field of research is evolving hence the purpose of the handbook is to inform. It is not used in lieu of licensed professionals who know your complete medical situation, including past experiences, current symptoms, and unique situation. Readers and loved ones should consult a licensed health professional who knows their personal medical history on matters relating to their health and well-being.

Dedication

To my love, Len who supports my desire to learn and explore, you made this happen.

Table of Contents

Foreward: Dr. Damato

Introduction

Preface

My Experience With OM

Diagnosis Process, Eye Parts, Condensed Research

A Few Of The Treatment Options

Daily Routines Following Diagnosis Of OM

Reactions

Trauma

When OM Hits The Family, Children, Spouse And Significant Other

Big Questions

Options For Growing Into The Future

Now, Where Do We Go From Here?

Mets: Metastatic Melanoma

Resources

Glossary

OM Bibliography

Epilogue

Acknowledgments

About The Author

Foreward: Dr. Damato

We all have a significant chance of developing cancer. As one who has lost close relatives to cancer, and as an eye surgeon specializing in ocular melanoma and other eye tumors, I know only too well how this disease can rob us of our health, our ability to fulfil our responsibilities at home and at work, our independence, and life itself. I have learnt from my patients how vitally important it is to harness all available resources to receive the best possible care and to continue to live life to the fullest as much as one can, for our own benefit and for the benefit of those who depend on us in some way.

Anne Osborn, the author, has excellent credentials because she is a fully-qualified therapist, with much experience in helping patients with stressful conditions to cope with their condition. Her expertise on ocular melanoma is enhanced by her own experience with this disease, with having lost her mother to the same kind of eye cancer.

There is a great need for guides like this, because, unfortunately, not every care provider gives patients all the information they need to choose the best treatment, to regain their peace of mind, to prevent and address financial problems, and to be prepared for any eventuality. It is therefore vitally important for patients and their loved ones to educate themselves as best they can. This is difficult because although there are many valuable sources of information, these can be hard to find, especially at a stressful time when dealing with a frightening diagnosis and perhaps going through an uncomfortable and disruptive course of treatment, possibly far away from home.

Anne’s advice is inevitably colored by her own unique experience and personality and this handbook is not meant to be an encyclopedic tome on coping with eye cancer, but I would expect every reader to relate to the author in some way and to come away with some helpful tips that should ease their journey, whatever the outcome.

Bertil Damato, MD, PhD

Emeritus Professor of Ophthalmology and Radiation Oncology

University of California, San Francisco

Introduction

I attended the OM Foundation’s 5th Annual Eye Am Not Alone Patient Retreat 2015 as a new patient. There, by myself and newly medically retired psychotherapist, I felt the pangs of being a newbie with about 100-150 other patients and care-providers.

Walking the halls of the Cleveland Clinic I felt my anxiety return, the fears of melanoma, the questions and the sense of not knowing what was coming. The sounds echoing in the halls, the clicking of my boots: I knew I needed to help other people with what I know about anxiety and fear.

During that conference, we heard Dr. Afshar (UCSF) present his findings about how patients felt supported or pushed aside by their physicians. I knew from working in the medical field nearly 40 years I could help by providing tools to people on what each of us may or may not experience.

In your hands, this handbook covers basic terminology, what you might expect at the start with the tests. These are written by a lay educator, not a professional since this isn’t my area of expertise. They are shared for the purpose of encouraging you to ask more questions of your physician or other patients.

What I wrote about in more depth is about the emotional aspects of this journey. The fears, grief, and the ever present scan anxiety (scanxiety) or NED, no evidence of disease. Lots of tools or resources and a bibliography for each section will provide a plethora of knowledge.

In writing this handbook, I felt like I was talking to each reader, individually. My hope is you will find information helpful and incorporate the opportunities available to each one of us as to how we face the OM diagnosis.

Preface

I am glad you found this handbook, hopefully at the start of your diagnosis of Ocular Melanoma (OM). Perhaps your diagnosis isn’t confirmed by the biopsy or it already is and now there are decisions how to proceed. Flip through the short essays and read what speaks to you.

The OM diagnosis is quite shocking. Knowledge is your ally. Be an informed participant on your treatment team as you proceed one step at a time.

The handbook is written from both a professional and personal standpoint. As a licensed marriage family therapist, my specialties include both working with trauma and emergency workers, police and fire over the past 35 years.

My initial introduction to OM was my Mother’s diagnosis when she was 48-49 years old. The impact on the family was devastating both for my father, and my siblings. Her chemotherapy medical treatment was difficult. She gained her wings within a year following her diagnosis. I was a teenager at the time with two younger siblings in the home and an older brother in the military, far away.

Now, I am re-visiting the frightening prospects with my own diagnosis of OM, Class 2. Writing this handbook is in support of you. No one should navigate these murky waters by themselves.

The purpose of this handbook is to offer hope while making sense out of this rare and difficult disease.

Step 1: Is making sure you understand you are not alone. Allow other people to help you feel the preciousness of