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NCCN Guidelines for Patients


Mycosis Fungoides, Version 1.2016

How to use this book

Who should read this book?

The focus of this book is mycosis fungoides.

Mycosis fungoides is the most common type

of lymphoma of the skin. Although related,

the book does not address care for Sézary

syndrome. People with mycosis fungoides and

those who support them—caregivers, family,

and friends—may find this book helpful. It may

help you discuss and decide with doctors what

care is best.

Where should I start


Starting with Part 1 may be helpful. It explains

what mycosis fungoides is and how it is

diagnosed. Parts 2 through 5 address issues

related to treatment. Part 2 lists what health

care is needed before treatment. Part 3 briefly

describes all the types of treatments so you

can understand your options that are listed in

Part 4. Tips for making treatment decisions are

presented in Part 5.

Does the whole book

apply to me?

This book includes information for many

situations. Your treatment team can help. They

can point out what information applies to you.

They can also give you more information. As

you read through this book, you may find it

helpful to make a list of questions to ask your


The recommendations in this book are based on

science and the experience of NCCN experts.

However, these recommendations may not be

right for you. Your doctors may suggest other

tests and treatments based on your health

and other factors. If other recommendations

are given, feel free to ask your treatment team


Making sense of medical


In this book, many medical words are included.

These are words that you will likely hear from

your treatment team. Most of these words may

be new to you, and it may be a lot to learn.

Don’t be discouraged as you read. Keep reading

and review the information. Don’t be shy to ask

your treatment team to explain a word or phrase

that you do not understand.

Words that you may not know are defined in the

text or in the


. Words in the


are underlined when first used on a page.

Acronyms are also defined when first used

and in the


. Acronyms are short words

formed from the first letters of several words.

One example is