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NCCN Guidelines for Patients



Waldenström’s Macroglobulinemia, Version 1.2017


Making decisions

It’s your choice

Questions to ask your doctors

Learn all you can about WM. This book

is a good place to start. Parts 1–4 of this

book are meant to help you navigate a

diagnosis of WM. Details are given on

when to get treatment and what your

options may be. Part 5 has sample

questions for your doctors and space to

create your own questions. In the last

section, you will read about getting a 2


opinion and finding support services.

It’s your choice

The role patients want in choosing their treatment

differs. You may feel uneasy about making treatment

decisions. This may be due to a high level of stress.

It may be hard to hear or know what others are

saying. Stress, pain, and drugs can limit your ability

to make good decisions. You may feel uneasy

because you don’t know much about cancer. You’ve

never heard the words used to describe cancer,

tests, or treatments. Likewise, you may think that

your judgment isn’t any better than your doctors’.

Letting others decide which option is best may make

you feel more at ease. But, whom do you want to

make the decisions? You may rely on your doctors

alone to make the right decisions. However, your

doctors may not tell you which to choose if you have

multiple good options. You can also have loved

ones help. They can gather information, speak on

your behalf, and share in decision-making with your

doctors. Even if others decide which treatment you

will receive, you still have to agree by signing a

consent form.

On the other hand, you may want to take the lead or

share in decision-making. In shared decision-making,

you and your doctors share information, discuss the

options, and agree on a treatment plan. Your doctors

know the science behind your plan but you know

your concerns and goals. By working together, you

can decide on a plan that works best for you when it

comes to your health and personal needs.

Questions to ask your doctors

You will likely meet with experts from different

fields of medicine. It is helpful to talk with each

person. Prepare questions before your visit and ask

questions if the information isn’t clear. You can also

record your talks and get copies of your medical

records. It may be helpful to have a family member or

friend with you at these visits. A patient advocate or

navigator might also be able to come. They can help

you ask questions and remember what was said.

The questions on the next few pages are

suggestions for information you read about in this

book. Feel free to use these questions or come up

with your own personal questions to ask your doctor

and other members of your treatment team.