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You must be able to talk with your doctor to
get what you need
Being treated for cancer often means that you will have more
than one doctor. You may even have a team of doctors, nurses, and other
people taking care of you. You may get information from many of these
people, but it's a good idea to pick one doctor to be the one you go to
with questions. You may choose the doctor you see most often, but some
people pick a different one.
You should feel at ease with your doctor. But sometimes, it
takes a little time and work before this happens. Take the time to ask
your questions and make your concerns known. Likewise, your doctor
should make the time to answer your questions and listen to your
concerns. If you and your doctor feel the same way about sharing
information and making choices, you will probably have a good
relationship and your needs will be met.
Ask yourself, "How much do I want to know?"
Having an idea of how much you want to know is the first step
toward feeling good about talks with your doctor.
You may want to know a lot of medical details about your
illness. Some people feel more in control of what is happening to them
when they know all of the facts. Decide how much detail about the
cancer and your treatment would be helpful, and let your doctor know.
You may want only small amounts of information. Some people
get upset when they are told too many details. They may want simple
directions -- what pill to take or what their treatment will be and
when it will be done. They feel overwhelmed by medical details and
would rather leave most decisions to the doctor.
You may want to discuss everything. Some people want to talk
about the pros and cons of all the options before they choose and start
treatment. They find reliable sources of information and learn all they
can about what is going on. They try to fully understand their cancer
and what they can expect.
Don't be afraid to tell your doctor how much or how little you
want to know.
Giving and getting information
Each person has his or her own way of sharing information.
That's why the perfect doctor for one person may not be a good match
for another. Think about what you value in a doctor. Some people want a
doctor who will share information in a clinical and business-like
manner. Facts, knowledge, and excellent treatment may be what they're
looking for. They expect their doctor to be the medical expert rather
than a friend.
Other people want their doctors to have an excellent "bedside
manner." They value a doctor who is aware of both their emotional
health and medical needs. They want a doctor who feels more like a
friend than a "boss" or business partner.
After you have thought through what you want as a patient, it
is time to look at how you can best talk with the doctor you have
chosen.
Asking questions
Write down your questions as they come up between visits and
take them to your next appointment. Here are some questions your doctor
can usually answer for you. Keep in mind that the nurses and other
members of your health care team can answer many of your questions,
too.
- What do I have? (What is my diagnosis?)
- What treatment do you recommend?
- Are there other treatments?
- What are the benefits of these treatments?
- What medicines are you giving me? What are they for?
- How should I expect to feel during treatment?
- What side effects, if any, can I expect to have?
- What can be done about the side effects?
When your doctor gives you instructions, write them down. Make
sure you understand them before you leave the office. You will need to
follow them exactly. You may also want to keep written notes on any
health questions and concerns. Bring your notes with you to
appointments to help you remember what you wanted to ask or tell your
doctor.
Here are other things you may want to discuss with your doctor
before and during treatment:
- How will treatment affect the things in my life that are
important to me? For example, will the disease or the treatment keep me
from working or from caring for my family? How will I cope if I live
alone? Will I be able to have children after treatment? Will I have any
physical problems? Again, ask your doctor if you want more information
about your treatment. Ask if there is written information you can take
with you.
- Is it OK to wait to start treatment? Maybe you have a
vacation, wedding, graduation, or other big event you want to go to
before starting treatment. Or maybe you feel like your doctor is
waiting too long to do your surgery or start your radiation or chemo.
You may feel as if every day that goes by is one lost when you could
have been fighting the cancer. Talk to your doctor about this. It may
be safe to put off treatment for a short time. And in some cases it is
best to take time to get as much information as you can about your
overall health and the cancer in order to know which treatment is best
for you.
- What is the best time to call if I have a question? Some
doctors have a special time to return calls. Expect your doctor to call
you back, but remember that a quick response may not be possible if
another patient is having a crisis. And many times a nurse can answer
your questions, too.
- Who else gets information about me? Is there another doctor
who should be kept informed? You may also want your doctor to be able
to talk with your spouse, family members, or loved ones about your
condition. Think about your choices and tell your doctor what you want.
You may have to sign a form giving the doctor permission to talk to
certain people. For more information on patient privacy, see our
document What Is HIPAA?
- Always tell your doctor about any effects from your
treatment or from the cancer itself. Physical symptoms can be very
important for your doctor to know about during (and even after)
treatment. People with cancer may have trouble with pain, breathing,
sleeping, nausea, appetite, their bowels, feeling tired, or other
problems. Many discomforts can be prevented or made less of a problem
with help from your doctor. Tell the doctor:
- What kind of symptom you are having and exactly how it
feels
- The time of day you usually notice this symptom
- How bad it is
- Where you feel it in your body
- How long it lasts
- What, if anything, makes the symptom better or worse
- In what way or ways it affects or interferes with your
daily life
If you keep having problems,
let your doctor know what works and what doesn't. Most people have to
try more than one way to get symptoms under control.
- If you feel sad, overwhelmed, or hopeless a lot of the time
and these feelings don't go away, bring this up with your doctor. There
are many kinds of emotional distress that go with cancer and its
treatment. You may have a problem that can be treated. See our document
called Distress in People With Cancer for more details.
Above all, your doctor should take your questions seriously.
He or she should be interested in your concerns and not make you feel
rushed. If your doctor does not respond this way, bring it up at your
next visit.
Remembering what your doctor says
It's hard to understand complex information when you are
anxious or afraid. And sometimes, without knowing it, doctors use words
their patients don't understand. If you don't understand something, ask
your doctor to explain it to you.
Even if the doctor carefully explains things, you may not hear
or remember all that is said. Here are some ways to help you remember
everything your doctor tells you. Decide which way will be best for
you.
- Take notes on what your doctor says.
- Ask if you can record your talks.
- Take a family member or friend there with you. He or she
can remind you of questions you want to ask and help you remember what
the doctor said. You may want to take along the person who talks to
your family about how you are doing. This will keep that person
informed and help your family feel included. It will also keep you from
having to answer a lot of questions. You may want your family's help in
making decisions, so keeping them up to date is a good idea.
The doctor-patient relationship
A good doctor-patient relationship is a 2-way street. Here are
some ways you can help keep up your end of the relationship:
- Tell your doctor about any changes in your body and how it
is working -- from sleep and bowel habits to headaches. Make notes so
you can tell your doctor everything.
- Ask your doctor what changes you should call about during
office hours and which ones would need an emergency call during times
when the office is closed.
- Discuss your concerns about how cancer will affect your
life. Be honest about your habits -- even if they're habits that you
may not be proud of, like smoking. Never hold back information.
Something you think is minor could affect your treatment. Or something
you think is serious might be easily relieved.
- Make a list of all your questions, and take it with you to
your doctor visits. Don't be ashamed or shy about asking these
questions. There is no such thing as a "dumb" question. Check the list
of questions above for some ideas, and then add your own.
Be sure your doctor has a copy of your most recent
instructions on the care you want if you become unable to make
decisions for yourself. These instructions are called advance
directives. If you would like to learn more, call us at 1-800-227-2345
and ask for Advance Directives.
The doctor-patient relationship when you're
in the hospital
If you are in the hospital, your relationship with your doctor
will change somewhat. Many other people will be involved in your care
during this time. And your doctor may not be the only one making
treatment decisions.
Sometimes hospital policies and routines clash with your own.
In the hospital, you will also be surrounded by noise and activity,
which can be stressful in itself. Some of this can't be avoided, but
you can bring up problems with the nurses who are caring for you. They
can offer ideas about ways to deal with these changes, and how the
staff can help meet your needs. Keep in mind that your doctor may also
be able to help you solve problems that might come up as you adjust to
hospital routines and practices.
If you have a problem with your doctor while you are in the
hospital, there are other people who may be able to help. Speak to your
nurse, talk to a social worker, or ask if the hospital has a patient
service representative on staff. They can give you support and help you
organize your thoughts before talking with your doctor. With your
permission, they might even speak directly with your doctor.
Don't be afraid to talk to your doctor
Your doctor and the rest of your health care team want to help
you and support you through this time. And people who have cancer
likely to want to build good relationships with their doctors. A good
relationship doesn't just happen -- it takes care and effort on both
sides. Try to figure out your needs and how to best talk to your doctor
about them. Work together. Chances are you'll both benefit from it.
Getting a second opinion
Cancer treatment is so complex, and some people don't know
where to start asking questions. But they may wonder if another doctor
might offer something different in the way of treatment. You may find
that you want to talk with another doctor who can look at your test
results, talk with you about your personal situation, and maybe give
you a different take on it.
Some people find it hard to tell their doctors that they'd
like a second opinion. It may help you to know that it is common for
patients to get a second opinion, and most doctors are comfortable with
the request. In fact, some insurance companies require you to get one
before you start treatment. If you are unsure of how to begin, here are
some ways that may help you bring it up with your doctor.
- "Before we start treatment, I'd like to get a second
opinion. Will you help me with that?"
- "If you had my type of cancer, who would you see for a
second opinion?"
- "I think that I'd like to talk with another doctor to be
sure I have all my bases covered."
- "I'm thinking of getting a second opinion. Can you
recommend someone?"
You can ask your doctor to refer you to someone, as suggested
above. You may also want to look at our document, Choosing a Doctor and a Hospital
for other ideas.
Once you have decided who you will see for your second
opinion, ask that your medical records, original x-rays, and all test
results be shared with the new doctor. This way you won't have to
repeat them. You will probably need to ask the doctor's office staff to
help you with this. You may need to sign a release of information form
to have the records sent. Or you may want to take copies of your
medical records to the new doctor yourself.
If you have a problem talking with your
doctor
If you have problems talking with your doctor, there are often
ways to make things better. Try working out your concerns before
deciding the situation is hopeless.
First, state your concern as honestly and openly as you can.
Here are some ways you may want to think about starting the
conversation:
- "I’m concerned that we aren't communicating well,
and here's why ..."
- "I need to be able to talk with you about _________, and I
feel like I can't. Can we discuss this?"
- "I realize that you're very busy, but I need to discuss
_________ with you. Can we schedule a time to do that?"
- "I'm having trouble understanding ___________. Can you help
me?"
If you need more details after your doctor answers a question,
say so. Sometimes it's even helpful to ask the same question again in a
different way. Unless you tell your doctor that you don't understand
something, he or she will probably think that you do. There's nothing
wrong with telling your doctor that you don't understand. If you want
to learn more about your cancer treatment, ask your doctor to suggest
some reading materials. Keep in mind that nurses can be great sources
of information, too. Learning more about your treatment can help you
become more actively involved in it.
If you are unable to work out the problem with your doctor
during regular visits, ask for a special visit to discuss it. If the
issue concerns your cancer treatment, go to the meeting with as much
information as possible. You can call us at 1-800-227-2345 or visit our
Web site at www.cancer.org
for more information about your type of cancer and its
treatment. Always tell your doctor where you got your information and
then ask for his or her opinion.
Even if you feel frustrated or angry, try to avoid being
hostile toward your doctor. Often people become defensive and withdraw
when they feel attacked -- a response that will be not be helpful in
the long run. State your concerns and questions clearly and honestly,
without accusing.
What should you do if you feel you have done your part but the
situation has not improved? You might think about talking with a third
party about the problem. The head nurse or your family doctor might be
willing to discuss the matter with the doctor. Sometimes this is less
stressful than facing the doctor directly, and their help could improve
the situation.
If not, it may be time to find a new doctor. Don't stay with a
doctor only to protect his or her feelings. Just because you were
referred to the doctor does not mean you can't decide to change on your
own. It's your body and you have the right to find the best doctor for
you.
Information from your doctor that you will
need later
At some point -- even if you don't change doctors before or
during treatment -- you are likely to find yourself in the office of a
new doctor. It is important that you be able to give your new doctor
the exact details of your diagnosis and treatment. Make sure you have
the following information handy and always keep copies for yourself:
- A copy of your pathology report from any biopsy or surgery
- If you had surgery, a copy of your operative report
- If you were in the hospital, a copy of the discharge
summary that every doctor must prepare when patients are sent home
- If you had radiation, a final summary of the dose and field
- Since some drugs can have long-term side effects, a list of
all your drugs, drug doses, and when you took them
You can usually ask your treating doctor's office staff for
copies of your records. Keep in mind that doctors sometimes move and
offices can close, so ask for your records sooner rather than later. If
the treatment or test took place in a hospital, you will need to
contact their medical records department to find out how to get these
records. Hospitals do dispose of records after a certain length of
time, so don't delay. This is the kind of information you will want to
keep the rest of your life, since almost any doctor you see in the
future will need it.
Additional resources
More information from your American Cancer
Society
The following related information may also be helpful to you.
These materials may be ordered from our toll-free number or found on
our Web site.
No matter who you are, we can help. Contact us anytime, day or
night, for information and support. Call us at 1-800-227-2345 or
visit www.cancer.org.
Last Medical Review: 02/01/2010
Last Revised: 02/01/2010
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