Health Library

You may not know as much about cancer and its treatment as your healthcare provider
does, but you and your family are the only ones who can decide what is best for you.
As part of your team, remember that you have a part to play in your care.

1. Don’t be afraid to ask questions. Many healthcare providers want you to ask questions. You may not know which questions
to ask. It is often easy to forget questions you (or your family) may have, so you
may want to write your questions down before you go into the healthcare provider’s
office. It is also hard to remember everything you’re being told at each visit. Be
sure you or your family member writes down what your healthcare provider tells you.
You may want to record the conversation. Just make sure to ask your healthcare provider
if it is OK to do so.

2. Ask for reliable books, Internet sites, pictures, diagrams, or other visual aids. Ask your healthcare provider to show you where your cancer is in your body, what
will be removed, what will remain, and how the treatment will work. Being able to
picture your cancer and how treatment will affect it can be a powerful aid as you
make decisions.

3. Make sure you get the answers you need. Cancer is a complicated disease, and different people have different ways of understanding
what is happening to them. Don’t be shy to say, “I don’t understand. Would you please
explain it to me again?” Or, if needed, don’t be afraid to call back and ask to speak
with your healthcare provider or nurse again.

4. Don’t withhold information. Don’t tell your healthcare provider or nurse that you’re just fine when you’re not. Your healthcare provider and nurse need to know about new symptoms
and changes in how you feel. Tell them if you’re having pain. Share with them if you’re
using any other treatments along with your healthcare provider-prescribed cancer treatment.
Keep in mind that some alternative treatments like nutritional therapies interfere
with standard cancer treatments. Giving your healthcare providers a truthful picture
of what complimentary therapies you are using, or thinking of using, will help ensure
that your cancer treatments will be safe. All this information is important and will
help your team manage your treatment program in the best way possible.

5. Take a partner with you to your appointments and treatment. Your spouse, a significant other, a relative, a friend, or an adult child can be
helpful during these visits. Your partner can be a valuable set of ears and may even
ask questions you did not think of or didn’t remember. Talk before the visit to work
together as a team to make sure you know what questions or problems you want to talk
about. Your partner can be your advocate, asking the tough questions that you’re not
comfortable with. Having a partner with you is especially important if you’re on medication
or if you’re anxious or upset. You may be asked to sign a medical release form granting
your family member or friend the right to talk about your treatment or other concerns
with your medical team. That is done to protect your privacy. Talk with your partner
right after the visit about the information you received. While it is fresh, review
the information to make sure you both heard and understood the same things. Take notes
and write down other questions you may have. You can also use a tape recorder, but
make sure to ask the healthcare provider if it is OK to record your conversations.

6. Avoid the urge to get upset with the messenger. There is often no good way to give someone bad news. It is important to keep in mind
that your healthcare providers are doing everything they can to help you get well.

7. Make sure all your healthcare providers talk with each other. Often, you will have more than one healthcare provider, and each one should know
what is happening to you. Make a list of all your healthcare providers’ names, specialties, phone numbers, and addresses. Give
this information to each person on your list. This will make it easier for them to
consult each other, share reports and medical records, and talk about important issues
regarding your care. You may have to sign medical releases giving them permission
to share information and discuss your case with each other. This is done to protect
your privacy. When you visit one healthcare provider, ask if he or she has talked
with your other healthcare providers or gotten their reports.

8. Don’t be afraid to talk with your healthcare provider about problems or concerns. Your relationship with your healthcare provider is an important one. As with all
relationships in life, difficulties may arise, and talking about them can help. Be
clear and precise in stating your concerns and give examples. Listen to your healthcare
provider’s response and try to understand his or her perspective. Offer ways on how
to avoid these problems in the future. If you remain unhappy with your relationship,
you may decide to explore other options, such as switching healthcare providers. If
this happens, respectfully inform your healthcare provider of your decision and the
reasons, and ask for his or her help in transferring your care to your new healthcare
provider. Your primary care physician may help you with this as well.

Taking an active role in your care will help you get the information you need and
ensure that everyone is working with you to fight your cancer. Not everyone is comfortable
doing this. For some, it takes time to learn how to be an active team member. You
may be surprised at how good you and your partner will get at this over time.

Caregiver’s tip: Be an advocate for your loved one. Informed patients and families often have better
outcomes.