Umbrella Organization of European Waldenström patient supportgroups and patients

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WALDENSTRÖM'S
MACROGLOBULINEMIA
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Getting the most from your doctors appointment

Source: www.myeloma-euronet.org/en/resources/expert-patient.php

Introduction
Many patients report that they don't have enough time, have the opportunity to ask questions, know what to ask, or what to expect when they go to see their doctor. But understanding each other is the key to a successful doctor patient relationship.
All patients are different and therefore the degree to which they want to be involved in their treatment and care will vary. There are no rights and wrongs to this, other than you having the right amount of information and the type of relationship with those caring for you that you are happy with.
Being informed about your disease and having a positive partnership with your doctor can provide many benefits, including feeling more confident that your doctor understands your needs and concerns and working with your doctor to find the right treatment option that suits you.

Top Tips
The following list may provide some useful tips for helping you to work in partnership with your doctor to make decisions about your treatment and care:

When diagnosed
Make notes regarding you and your family's medical history. This includes addressing questions such as:

Were there any severe diseases, operations or hospital stays in the past?

Are there any other diseases I am currently living from? Which medications do I take? Are there any drugs I do not tolerate very well?

Carefully watch your symptoms and keep taking notes on how you feel from day to day - even seemingly unimportant or embarrassing symptoms can be important.

Did you see any (other) doctor to look after those symptoms? How were they treated, and what was the result?

Obtain as much information as you feel helps you to understand the disease you are living with (talking to other myeloma patients; books; brochures; Internet, etc.). If you cannot obtain this information by yourself ask others for help.

Get a glossary (a dictionary explaining technical terms) where you can look up expressions that are difficult to understand.

Be wary of information coming from unknown sources, and always compare the information with what you have already learned or asked someone who is medically trained to check it for you.

If possible, try to obtain information on relevant clinical trials and consider participating in such a trial (looking at both the advantages and disadvantages).

Preparing for a consultation
Consider asking a trusted person to go along with you to the appointment.

Prepare your notes and take them with you.

Try to write down any questions you might want to ask in advance as it is easy to forget them when you only have a short time with your doctor.

During the consultation
When discussing treatment options, always ask about prospects; risks; side effects; duration of treatment; instructions for using drugs; contraindications; what to do in case of intolerance; other treatment options; clinical trials; the option to sit and wait to see what happens; additional treatment or care options (e.g., psycho-oncological care).

Make sure you have received answers to all of your questions and ask for a copy of your medical results.

Don't forget to take notes or ask the person who is with you to do that for you.

Always ask if there is something that you don't understand. You have the right to medical information that is explained to you in a way you can understand.

Were all treatment options, your treatment plan and next steps fully discussed?

If there wasn't enough time, ask for a second appointment to follow this up.

Ask for any supplementary information they may have on the things you have discussed.

Always consider getting a second opinion if you are not satisfied and tell your doctor about it. Professional doctors will not have an issue with this.

Be realistic and don't let anyone push you towards a certain treatment. Take your time and make sure you take an informed decision that really suits your needs.

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