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Taking Control: Your Care and Treatment
Talking With Your Health Care Team
Other Tips for Talking With Your Health Care Team
Treatment Choices
Clinical Trials
Making Your Wishes Known
Cancer that returns can affect all parts of your life. You may
feel weak and no longer in control. But you don't have to feel
that way. You can take part in your care and in making
decisions. You can also talk with your health care team and
loved ones as you decide about your care. This may help you
feel a sense of control and well-being.
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"I always ask lots of questions because I want to be ready
just in case something happens. I really do believe that
everyone taking care of me has my best interests at heart.
But I worry that if I don't ask about everything, they may
forget to give me the answers." - Bonita |
Many people have a treatment team of health providers who
work together to help them. This team may include doctors,
nurses,
oncology social workers,
dietitians, or other
specialists.
Some people don't like to ask about treatment choices or side
effects. They think that doctors don't like being questioned.
But this is not true. Most doctors want their patients to be
involved in their own care. They want patients to discuss
concerns with them.
Here are a few topics you may want to discuss with your
health care team:
- Pain or Other Symptoms. Be honest and open
about how you feel. Tell your doctors if you have pain
and where. Tell them what you expect in the way of
pain relief. (See
Chapter 4 for more about pain and
other symptoms.)
- Communication. Some people want to know details
about their care. Others prefer to know as little as
possible. Some people with cancer want their family
members to make most of their decisions. What
would you prefer? Decide what you want to know,
how much you want to know, and when you've heard
enough. Choose what is most comfortable for you.
Then tell your doctor and family members. Ask that
they follow through with your wishes.
- Family Wishes. Some family members may have
trouble dealing with cancer. They don't want to know
how far the disease has advanced. Find out from your
family members how much they want to know. And
be sure to tell your doctors and nurses. Do this as
soon as possible. It will help avoid conflicts or distress
among your loved ones. (See
Family and Friends
to read more
about talking with your loved ones.)
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"You need a notebook because you go in there and they're
telling you things, and you're so scared that you don't really
listen. Then you get home, and you can't even remember
what they said."- Jake |
- Speak openly about your needs, questions, and
concerns. Don't be embarrassed to ask your doctor to
repeat or explain something.
- Keep a file or notebook of all the papers and test
results that your doctor has given you. Take this file
to your visits. Also keep records or a diary of all your
visits. List the drugs and tests you have taken. Then
you can refer to your records when you need to.
Many patients say this is helpful, especially when you
meet with a new doctor for the first time.
- Write down your questions before you see your doctors
so you will remember them. (See below.)
- Ask a family member or friend to go to the doctor's
office with you. They can help you ask questions to
get a clear sense of what to expect. This can be an
emotional time. You may have trouble focusing on
what the doctor says. It may be easier for someone
else to take notes. Then you can review them later.
- Ask your doctor if it's okay to tape-record your talks.
- Tell your doctor if you want to get dressed before
talking about your results. Wearing a gown or robe is
distracting for some patients. They find it harder to
focus on what the doctor is saying.
There are many treatment choices for recurrent cancer. Your
treatment will depend partly on the type of cancer and the
treatment you had before. It will also depend on where the
cancer has recurred. For example:
It's important to ask your doctor questions about all your
treatment choices. You may want to get a
second opinion
as well. You may also want to ask whether a
clinical trial
is an
option for you.
| Should I Get A Second Opinion? |
|
Some patients worry that doctors will be offended if they
ask for a second opinion. Usually the opposite is true.
Most doctors welcome a second opinion. And many
health insurance companies will pay for them.
If you get a second opinion, the doctor may agree with
your first doctor's treatment plan. Or the second doctor
may suggest another approach. Either way, you have
more information and perhaps a greater sense of
control. You can feel more confident about the decisions
you make, knowing that you've looked at your options. |
Treatment clinical trials are research studies that try to find
better ways to treat cancer. Every day, cancer researchers
learn more about treatment options from clinical trials.
Each study has rules about who can take part. These rules
include the person's age and type of cancer. They also cover
earlier treatments and where the cancer has returned.
Clinical trials have both benefits and risks. Your doctor
should tell you about them before you make any decisions
about taking part.
There are different phases of clinical trials. They include:
- Phase I trials test what dose of a treatment is safe
and how it should be given.
- Phase II trials discover how cancer responds to a
new drug or treatment.
- Phase III trials compare an accepted cancer
treatment (standard treatment)
with a new treatment
that researchers hope is better.
Taking part in a clinical trial could help you and others who
get cancer in the future. But insurance and managed care
plans do not always cover the costs. What they cover varies by
plan and by study. If you want to learn more about clinical
trials, talk with your health care team.
For more information about clinical trials, see NCI's
brochure If You Have Cancer: What You Should Know About
Clinical Trials.
| Questions to Ask Your Doctor or Nurse
About Treatment Choices |
Decide on the most important things you need to ask
your doctor or nurse. Some ideas:
- What are my treatment choices?
- Which do you suggest for me?
- How is this treatment the same as or different
from my last treatment?
- How successful is the treatment you recommend?
Why is it best for me?
- Will I still be able to do things I enjoy with the
treatment? Without the treatment?
- How long will I be on this treatment?
- Will I have side effects? If so, how long will
they last?
- How can I manage the side effects?
- Will I have to stay in the hospital?
- Is a clinical trial available to me?
- Will I have to pay any costs in a clinical trial?
- If the treatment doesn't work, then what will I do?
|
When cancer returns, the treatment goals may change, or
they may be the same as they were for your first cancer. But
for many people, it's the second cancer
diagnosis
that finally
prompts them to make their wishes known. Although it can
be tough to think about, and maybe even tougher to talk
about, having recurrent cancer may prompt you to make
certain decisions about what you want done for you if you
are unable to speak for yourself.
Everyone should make a
will
and talk about end-of-life
choices with loved ones. This is one of the most important
things you can do. Also, think about giving someone you
trust some rights to make medical decisions for you. You give
these rights through legal documents called
advance directives. These papers tell your loved ones and doctors
what to do if you can't tell them yourself. They let you
decide ahead of time how you want to be treated. These
papers may include a living will
and a
durable power of attorney for health care.
Setting up an advance directive is not the same as giving up.
Making such decisions at this time keeps you in control. You
are making your wishes known for all to follow. This can help
you worry less about the future and live each day to the fullest.
It's hard to talk about these issues. But it often comforts
family members to know what you want. And it saves them
from having to bring up the subject themselves. You may also
gain peace of mind. You are making these hard choices for
yourself instead of leaving them to your loved ones.
Make copies of your advance directives. Give them to your
family members, your health care team, and your hospital
medical records department. That way, everyone will know
your decisions.
| Legal Papers At-A-Glance |
Advance directives
Other legal papers that are not part of the
advance directives
- A
will
tells how you want to divide your money
and property among your heirs. (Heirs are
usually the family members who survive you. You
may also name other people as heirs in your will.)
- A trust appoints a person you choose to manage
your money for you.
-
Power of attorney
appoints a person to make
financial decisions for you when you can't make
them yourself.
Note: You do not always need a lawyer present to fill out
these papers. But you may need a
notary public. Each state
has its own laws about advance directives. Check with your
lawyer or social worker about the laws in your state. (For
more, see Resources.) |
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