Adjusting to the News
Why and Where Cancer Returns
Taking Control: Your Care and Treatment
Managing the Side Effects of Your Treatment
Your Feelings
Setting Goals
Family and Friends
Looking for Meaning
A Time To Reflect
Resources
For more information
Adjusting to the News
Maybe in the back of your mind, you feared that your
cancer
might return. Now you might be thinking, "How can this be
happening to me again? Haven't I been through enough?"
You may be feeling shocked, angry, sad, or scared. Many
people have these feelings. But you have something now
that you didn't have before - experience. You've lived
through cancer once. You know a lot about what to expect
and hope for.
Also remember that treatments may have improved since you
had your first cancer. New drugs or methods may help with
your treatment or in managing side effects. In fact, cancer is
now often thought of as a chronic disease, one which people
manage for many years.
"When I found out I had cancer again,
I just felt numb. It was hard for me
to accept the news at first.
After a few weeks, though, I started
to really look at all my options
and things I could do for myself.
By doing this, it gave me back
some control." |
"One minute everything was fine,
and then my doctor dropped the
bomb that my cancer had come
back. In 5 short minutes, my life
had changed again." - Dorothy |
Why and Where Cancer Returns
"I was floored. I thought all the
cancer was gone. I was just getting
back to a normal life. I was even
more surprised that it came back
in a different place. But I didn't
care where it was. I just wanted it
to go away." - Ronald |
When cancer comes back, doctors call it a
recurrence
(or
recurrent cancer).
Some things you should know are:
- A recurrent cancer starts with cancer cells that the first
treatment didn't fully remove or destroy. Some may
have been too small to be seen in follow-up. This
doesn't mean that the treatment you received was
wrong. And it doesn't mean that you did anything
wrong, either. It just means that a small number of
cancer cells survived the treatment. These cells grew
over time into
tumors
or cancer that your doctor can
now detect.
- When cancer comes back, it doesn't always show up in
the same part of the body. For example, if you had
colon cancer, it may come back in your liver. But the
cancer is still called colon cancer. When the original
cancer spreads to a new place, it is called a
metastasis
(meh-TAS-tuh-sis). (See the box below.)
- It is possible to develop a completely new cancer
that has nothing to do with your original cancer.
But this doesn't happen
very often. Recurrences
are more common.
Where Cancer Can Return |
Doctors define recurrent cancers by where they develop.
The different types of recurrence are:
-
Local recurrence.
This means that the cancer is
in the same place as the original cancer or is very
close to it.
-
Regional recurrence.
This is when tumors grow in
lymph nodes
or tissues near the place of the
original cancer.
-
Distant recurrence.
In these cases, the cancer has
spread (metastasized) to organs or tissues far
from the place of the original cancer.
Local cancer
may be easier to treat than
regional
or
distant cancer.
But this can be different for each patient.
Talk with your doctor about your options.
|
Taking Control: Your Care and Treatment
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.
"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 1 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 2
to read more
about talking with your loved ones.)
"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 5.
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 6.) |
|
Managing the Side Effects of Your Treatment
You probably already know about ways to manage the side
effects of cancer treatment. If so, parts of this section will be
a review for you. It outlines some of the support therapies
cancer patients have found helpful.
For more information about side effects, see the NCI
booklets
Radiation Therapy and You: A Guide to Self-Help
During Cancer Treatments 3 and Chemotherapy and You: A Guide
to Self-Help During Cancer Treatments 4.
You have a right to comfort care both during and after
treatment. This kind of care is often called
palliative (PAL-ee-yuh-tiv) care. It includes treating or preventing
cancer symptoms and the side effects caused by treatment.
Comfort care can also mean getting help with emotional and
spiritual problems during and after cancer treatment.
People once thought of palliative care as a way to comfort
those dying of cancer. Doctors now offer this care to all
cancer patients, beginning when the cancer is diagnosed.
You should receive palliative care through treatment,
survival, and advanced disease. Your
oncologist
may be able
to help you. But a palliative care specialist may be the best
person to treat some problems. Ask your doctor or nurse if
there is a specialist you can go to.
"For me personally, the challenge
is not to let the treatments get the
best of me. I make sure if I have
any new aches or pains I tell my
doctor right away. He's great
about working with me to handle
these things." - Edna |
Having cancer doesn't always mean that you'll have pain. But
if you do, you shouldn't accept pain as normal. Your doctor
can control pain with medicines and other treatments.
Managing your pain helps you sleep and eat better. It makes
it easier to enjoy your family and friends, and to focus on the
things you enjoy.
Have regular talks with your health care team about your
pain. Let them know what kind of pain it is, where it is, and
how bad it is. These talks are important because pain can
change throughout your illness. And your pain may show
where cancer has returned after remission. Many hospitals
have doctors who are experts in treating pain. Tell your
doctor if you would like to talk to a pain specialist.
Treatments can be used for all types of pain, including:
- Mild to medium pain
- Medium to very bad pain
-
Breakthrough pain
- Tingling and burning pain
- Pain caused by swelling.
There are different ways to take pain medicine, such as:
- By mouth
- Through the skin (with a patch)
- By shots
- Through an
I.V.
pump.
Your medicine, and how you take it, will depend on the type
of pain and its cause. For example, for constant pain you
may need a steady dose of medicine over a long period of
time. You might use a patch placed on the skin or a slow-release
pill.
You may want to keep a pain diary to help you explain your
pain to your doctor. In the diary, write down:
- The time of day you had the pain
- What you were doing when you felt the pain
- What it felt like
- Where you felt it.
Your doctor may also ask you some questions about how your
pain affects your daily routine (see Controlling Pain: What to Tell Your Doctor).
Having your pain managed means that you can focus on
living your life and not be distracted by pain.
To learn more, see the NCI booklet Pain Control: A Guide for
People With Cancer and Their Families 7.
Controlling Pain:
What To Tell Your Doctor |
When describing pain to your doctor, give as much detail
as you can. Your doctor may want to know:
- Where exactly is your pain? Does it move from
one spot to another?
- How does the pain feel - dull, sharp, burning?
- How often do you have pain?
- How long does it last?
- Does it occur at a certain time of day - morning,
afternoon, night?
- What makes the pain better? What makes it worse?
|
Using Strong Drugs To Control Pain |
People with cancer often need strong medicine to help
control their pain. Don't be afraid to ask for pain
medicine or for larger doses if you need them. And the
drugs will help you stay as comfortable as possible.
People with cancer hardly ever get addicted to these
drugs. Sadly, fears of addiction sometimes prevent people
from taking medicine for pain. The same fears also
prompt family members to encourage loved ones to
"hold off" between doses. But people in pain get the
most relief when they take their medicines and
treatments on a regular schedule. |
Cancer pain is usually treated with medicine and other
therapies. But there are also some nondrug treatments. They
are types of
complementary and alternative medicine (CAM).
Many people have found the methods listed below helpful.
But talk with your health care team before trying any of
them. Make sure they are safe and won't interfere with your
cancer treatment.
-
Acupuncture
is a form of Chinese medicine that
stimulates certain points on the body using small
needles. It may help treat nausea and control pain.
Before using acupuncture, ask your health care team
if it is safe for your type of cancer.
-
Imagery
is imagining scenes, pictures, or experiences
to feel calmer or perhaps to help the body to heal.
-
Relaxation techniques
include deep breathing and
exercises to relax your muscles.
-
Hypnosis
is a state of relaxed and focused attention.
One focuses on a certain feeling, idea, or suggestion.
-
Biofeedback
is the use of a special machine to help
the patient learn how to control certain body
functions. These are things that we are normally not
aware of (such as heart rate).
-
Massage therapy
brings relaxation and a sense of
well-being by the gentle rubbing of different body
parts or muscles. Before you try this, you need to
check with your doctor. Massage is not recommended
for some kinds of cancer.
These methods may also help manage stress. Again, talk to
your health care team before using anything new, no matter
how safe it may seem. Ask your health care team for more
information about where to get these treatments. To learn
more, see the NCI booklet Thinking About Complementary and Alternative Medicine: A Guide for People With Cancer 8.
Fatigue is more than feeling tired. Fatigue is exhaustion -
not being able to do even the small things you used to do.
A number of things can cause fatigue. Besides cancer
treatment, they include anxiety, stress, and changes in your
diet or sleeping patterns. If you are having some of these
problems, you might want to:
- Tell your doctor or nurse at your next visit. Ask about
medicines that can help with fatigue.
- Eat a well-balanced diet
- Plan your days and do only what is important to you
- Take short breaks every day to rest and relax
- Take naps
- Ask others for help.
Nausea is feeling sick to your stomach. Vomiting means
throwing up. Both can be a problem for cancer patients.
Untreated nausea and vomiting can make you feel very tired.
They can also make it hard to get treatments or to care for
yourself. There are many drugs to help you control nausea
and vomiting. Ask your doctor which medicines might work
best for you.
You also may want to make these changes to your diet:
- Eat small amounts of food five to six times a day.
- Avoid foods that are sweet, fatty, salty, spicy, or
have strong smells. These may make nausea and
vomiting worse.
- Have as much liquid as possible. You'll want to
keep your body from getting too dry (dehydrated).
Broth, ice cream, water, juices, herb teas, and
watermelon are good choices.
For some patients, it's hard to eat the foods they normally
enjoy. For others, it's hard to eat anything at all. Are you
having trouble eating or digesting food? If so, you may want to
talk with your doctor about your diet. They may suggest:
- A special diet
- Other ways of getting the nutrition you need
- Tips on eating during treatment
- Seeing a dietitian.
For more information, see the NCI booklet Eating Hints for
Cancer Patients 9.
Illness, pain, stress, drugs, and being in the hospital can
cause sleep problems. These problems may include:
- Having trouble falling asleep
- Sleeping only for short amounts of time
- Waking up in the middle of the night
- Having trouble getting back to sleep.
To help with your sleep problem, you may want to try:
- Reducing noise, dimming lights, making the room
warmer or cooler, and using pillows to support
your body
- Dressing in loose, soft clothing
- Going to the bathroom before bed
- Eating a high-protein snack 2 hours before bedtime
(such as peanut butter, cheese, nuts, or some sliced
chicken or turkey)
- Avoiding caffeine (coffee, tea, cola, hot cocoa)
- Keeping regular sleep hours
- Avoiding naps longer than 15-30 minutes
- Talking with your health care team about drugs to
help you sleep.
Sometimes people with cancer feel pain in different parts of
their body. Others feel weak and tired. And some feel stiffer
than they used to. So it can become hard to move different
body parts. If you are having any of these problems, your
health care team may suggest you see a physical therapist.
The therapist may use heat, cold, massage, pressure, or
exercises to help you. Physical therapy may reduce tiredness
and help your body function better. It may help with
strength and balance as well. It also may help with stiffness
and other side effects of radiation therapy.
Complementary and alternative medicine (CAM)
treatment
can be helpful for some people. And some CAM treatments
are safe, such as those listed in Other Ways to Treat Pain. But you may
have read about different diets, vitamins, and herbs for
treating your cancer or symptoms. Talk with your health care
team before you try anything new. Here's why:
- Some CAM treatments are not proven to work and
could actually harm you.
- You may have a dangerous reaction. Or the CAM
treatment could interfere with the medicine your
doctor has prescribed.
- A "natural" product doesn't mean that it's a safe
product.
Seek information about CAM treatments from trusted
sources. Federal agencies and nonprofit cancer groups are
good sources. You might also want to read the NCI booklet
Thinking About Complementary and Alternative Medicine: A Guide
for People With Cancer 8.
Your Feelings
"Life has changed again and
I can't help feeling frustrated
with all that's going on.
One minute I'll be upset and
angry. Then the next minute,
I'll start crying all of a sudden.
I just never know what's
coming next." - Kathy |
People feel so many emotions when they find out that their
cancer has come back. Shock, fear, anger, and denial are just
a few. The new diagnosis hits them as hard as it did the first
time, or even harder.
Regardless of your first reaction, starting cancer treatment
again can place even more demands on your mind and
spirit. You'll have good days and bad days. So just remember
that it's okay to feel a lot of different emotions.
Some of these emotions may be ones you have had at other
times in your life. But you may be feeling them more intensely.
If you have dealt with them in the past, you may be able to
cope with them now, too. If some of the feelings are new, or
are so strong that it is hard to get through everyday activities,
you may want to ask for help.
There are many people who may be able to help you. These
include
health psychologists, oncology social workers, other
mental health experts, and leaders in your faith or spiritual
community. They know many ways to help you cope with
your feelings. See Ways You Can Cope for other ideas on
how to cope.
"Once you get diagnosed again and go through more
surgeries or procedures, your life is not normal. It's always
in the back of your mind. What now? What's next?" - Margaret |
Stress is a normal reaction to cancer. After all, you're dealing
with a lot: treatment, family, your job, money, and day-to-day
living. Sometimes, you may not even notice that you are
stressed. But your family and friends probably see a change.
Anything that makes you feel calm or relaxed may help. So
try to think of things that relax you and that you enjoy
doing. Some people try deep breathing, listening to tapes
that have nature sounds, or listening to music. See below for more ideas on how to relieve stress.
"I just keep telling myself, 'You've got to have hope, you've
got to have faith, because anything can happen.'" - Phil |
While you may be sad or depressed about your cancer
recurrence, you do have reasons to feel hopeful. Science
has advanced and cancer treatments have improved. So more
people are surviving cancer than ever before. Nearly 10
million people who have a history of cancer are alive today.
In other words, cancer is becoming a disease that doctors
can manage. To help build your sense of hope:
- Plan your days as you have always done.
- Don't limit the things you like to do just because you
have cancer.
- Look for your own reasons to have hope.
"I do have a lot of bad days, but you know, I don't talk
about those. I forget those. I think about all the good
things, and I have a lot of nice times when I'm with my
grandchildren, when I go to church, and when I'm with my
friends." - Helen |
Some people see their cancer coming back as a "wake-up
call." They may realize the importance of enjoying the little
things in life. They go places they've never been. They finish
projects they had started but put aside. They spend more
time with friends and family. They mend broken
relationships.
It may be hard at first, but you can find joy in your life. Take
note of what makes you smile. Pay attention to the things
you do each day that you enjoy. They can be as simple as
drinking your morning coffee, sitting with a pet, or talking
to a friend. These small, day-to-day activities can give you
comfort and pleasure.
You can also do things that are more meaningful to you.
Everyone has special things, both large and small, that bring
meaning to their life. For you, it may be visiting a garden in your city or town. It may be praying in a certain chapel. Or it
could be playing golf or some other sport that you love.
Whatever you choose, embrace the things that bring you joy
when you can.
"I just get myself worked up a lot. There are so many
things to deal with now. And I still have to deal with all
the things that were going on before I got sick again. How
am I going to get to the store before it closes? Has the dog
been fed? What about the report that's due at work?
I start to panic when I think of all the things on my plate." - Jing |
Cancer takes a toll on both your body and your mind. You
are coping with so much now. You may feel overwhelmed.
Pain and medicines for pain can also make you feel anxious
or depressed. And you may be more likely to feel this way if
you have had these feelings before.
Here are some signs of anxiety:
- Feeling very tense and nervous
- Racing heartbeat
- Sweating a lot
- Trouble breathing or catching your breath
- Having a lump in your throat or a knot in your
stomach
- Feeling fear.
Feeling anxious can be normal. But if it begins to disrupt your
daily life, tell a member of your health care team. They can
suggest someone for you to talk to. Or they can give you
medicines that will help. Some of the nondrug choices for pain
may work for your anxiety as well (see above 10).
"Every tomorrow has two handles. We can take hold of it
with the handle of anxiety or with the handle of faith." - Henry Ward Beecher |
"Honestly, I feel scared about a lot of things. Things I try
not to think about. It comes and goes, but there always
seems to be something. Even when I am having good days,
the fear is always in the back of my mind. It never goes
away really." - Deena |
It's normal to feel scared and worried. You may be afraid of
pain or other side effects, either from the cancer or the
treatment. You may worry about looking different as a result
of your treatment. You may worry about taking care of your
family, paying your bills, and keeping your job. You may be
afraid of dying.
It's hard to deal with the fear of so many unknowns. Some
people say it helps if you know what to expect in the future.
Ask your health care team questions, so you can understand
more about your cancer and treatment choices. Also, update
your will and other legal papers, if you haven't already done
so. Then you won't have to worry about them.
Fear can be overwhelming. Remember that others have felt
this way, too. It's okay to ask for help.
"I feel sad a good bit of the time now. One thing that
cheers me up is to be with my 4-year-old grandson. I love
watching him as he grows more and more each day.
Sometimes just thinking about him makes me feel better." - Edmund |
Sadness is a normal response to any serious illness. You may
feel sad that you have to go through treatment again. You
may feel sad that life won't be quite the same from now on.
It's okay to feel blue. You don't need to be upbeat all the
time or pretend to be cheerful. Many people say that they
want the freedom to just give in to their feelings sometimes.
But others say that it helps to look for what is good in life,
even in the bad times.
Depression can happen when sadness or despair seems to
take over your life. Some of the signs listed on the next page
are normal at a time like this. But if they last more than 2
weeks, talk to your doctor. Some symptoms could be due to
physical problems. This is why it's important to let your
doctor know about them.
Signs of Depression
- Feeling helpless or hopeless, or that life has no
meaning
- No interest in family, friends, hobbies, or things
you used to enjoy
- Loss of appetite
- Feeling short-tempered and grouchy
- Not being able to get certain thoughts out of
your mind
- Crying for long periods of time or many times
each day
- Thinking about hurting or killing yourself
- Feeling "wired," having racing thoughts or
panic attacks
- Sleep problems, such as not being able to sleep,
having nightmares, or sleeping too much.
|
"It challenged my faith... But I've come out of it okay. It
was tough in the beginning, trying to understand why God
would do this to me." - Bob |
You may also feel angry or frustrated. It's normal to ask,
"Why me?" You may be mad at the cancer, your doctors, or
your loved ones. If you are religious, you might even be
angry with God. If you feel angry, it's helpful to remember
that you don't have to pretend that everything is okay.
Try to figure out why you are angry. Anger sometimes comes
from feelings that are hard to show. These might be fear,
panic, frustration, worry, or helplessness.
It's not always easy to look at what is causing your anger. But
it's healthy to try. Being open and dealing with your anger may
help you let go of it. It's also good to know that anger is a form
of energy. You can express this energy through exercise, art, or
even just hitting the bed with a pillow.
"I am so tired all the time. I feel bad that my mom has to
take care of me and handle things for me like she did when
I was younger. I see everything she and Dad are dealing
with, yet there's nothing I can do about it. I know they
hate the fact that I'm going through this. I try to do what
I can, but I can't stop feeling guilty for what they are
going through, too." - Anne |
It's normal for some people to wonder whether they did
things that caused their cancer to recur. People feel guilty
for a number of reasons:
- They worry about how their family and friends feel.
- They envy other people's good health and are
ashamed of this feeling.
- They blame themselves for certain lifestyle choices.
- They feel guilty that their first treatment didn't work.
- They wonder if they waited too long to go back to the
doctor. Or they fear that they didn't follow the
doctor's instructions the right way.
But it's important to remember that the treatment failed you.
You didn't fail the treatment. We can't know why cancer returns
in some people and not others. So, it's important for you to
try to:
- Focus on things worthy of your time and energy.
- Let go of any mistakes you think you may have made.
- Forgive yourself.
You may want to share these feelings with your loved ones.
Some people blame themselves for upsetting the people they
love or worry that they'll be a burden to others. If you feel
this way, take comfort knowing that many family members
say that it is an honor and a privilege to care for their loved
one. Many consider it a time when they can share
experiences and become closer to one another. Others say
that caring for someone else makes them take life more
seriously and causes them to reevaluate their priorities.
If you don't feel that you can talk openly about these things
with your loved ones, getting counseling or joining a support
group may also help. Let your health care team know if you
would like to talk with someone about your feelings.
"I have lots of people around me who care, but I still feel
like no one really understands." - Carlos |
You may feel lonely, even when lots of people support and
care for you. Here are some common feelings:
- You feel like no one else understands what you're
going through, even those you love and care about.
- You feel distant from others. Or you find that your
family and friends have a hard time dealing with
your cancer.
- You realize that you aren't able to take part in as
many events and activities as you used to.
Although it may be harder some days than others, remember
that you aren't alone. Continue to do the things you've always
done as best you can. If you want to, tell people that you
don't want to be alone and that you welcome their visits.
More than likely, your loved ones have feelings like yours.
They may feel isolated from you and lonely if they are unable
to talk with you.
You may feel that this is not happening to you. It's tough to
accept that the cancer has come back. Feeling that you need
more time to absorb everything is natural. You may need
more time to adjust to the news. But this can become a
serious problem if it lasts longer than it should. It can keep
you from getting the treatment you need or talking about
your treatment choices. As time passes, try to keep an open
mind. Listen to what others around you suggest for your care.
Your feelings will come and go, just like they always have. If
you have some strategies to deal with them, you have already
taken a step in the right direction.
Know that many other people have been where you are.
Some do better when they join a support group. It helps
them to talk with others who are facing the same challenges.
You may prefer to join an online support group. That way
you can chat with people from home. Be sure to check the
privacy issues before you join.
If support groups don't appeal to you, there are many experts
who are trained to give cancer support. These include
oncology social workers, psychologists or health psychologists,
counselors, or members of your faith or spiritual community.
For more information, see the
Resources section 6.
A Word About Support Groups |
You may have heard about support groups in your area
for people with cancer. They can meet in person, by
phone, or over the Internet. They may help you gain new
insights into what's happening, get ideas about how to
cope, and help you know that you're not alone.
In a support group, people may talk about their feelings
and what they have gone through. They may trade advice
and try to help others who are dealing with the same
kinds of issues. Some people like to go and just listen.
Others prefer not to join support groups at all. Some
people aren't comfortable with this kind of sharing.
If you feel like you would enjoy outside support such as
this, but can't get to a group in your area, try a support
group on the Internet. Some people with cancer say that
Web sites with support groups have helped them a lot. |
"What I need at least once or
twice a week is to talk to one or
a group of people who are in
the same shoes as I am." - Vince |
Ways You Can Cope
You may be able to
continue many of
your regular
activities, even
though some may
be more difficult
than before.
Whatever you do,
remember to
conserve your
strength for the
things you really
want to do. Don't
plan too many
things for one day.
Also try to stagger
them during
the day.
Here are some
things other people
with cancer say
have helped them
cope. As you can
see, even the little
things help!
Setting Goals
"There are lots of things I still like
doing, but I know that I can't do
them as well or as much. But that
doesn't stop me from trying to
achieve them in a different way." - Sookie |
Cancer treatment can take up a lot of your time and energy.
It helps to plan something that takes your mind off the
disease each day. Aim for small goals each day, such as:
- Exercising
- Completing tasks you've been wanting to do
- Making phone calls
- Having lunch with a friend
- Reading one chapter of a book or doing a puzzle
- Listening to music or a relaxation tape.
Many people with cancer also set longer-term goals. They say
that they do much better if they set goals or look forward to
something special. It could be an anniversary, the birth of a
child or grandchild, a wedding, a graduation, or a vacation.
But if you set a long-term goal, make sure you are realistic
about how you will achieve it.
Remember, too, that being flexible is important. You may
have to change your plans if your energy level drops. You
may have to adjust your
goals if the cancer causes
new challenges. Whatever
your goals, try to spend
your time in a way that
you enjoy.
Family and Friends
"My father and I are so much
closer. It's a totally different
family than we were before I
was diagnosed. We've learned
how to talk about how we feel,
how to talk to each other about
what's going on and what we're
afraid of." - Charles |
Your loved ones may need time to adjust to the news that
your cancer has returned. They need to come to terms with
their own feelings. These may include confusion, shock,
helplessness, anger, and other feelings.
Let family members and friends know that they can offer
comfort just by:
- Being themselves
- Listening and not trying to solve problems
- Being at ease with you.
Being able to comfort you can help them cope with their
feelings.
Bear in mind that not everyone can handle the return of
cancer. Sometimes a friend or family member can't face the
idea that you might not get better. Some people may not
know what to say or do for you. As a result, relationships may
change, but not because of you. They may change because
others can't cope with their own feelings and pain. If you
can, remind your loved ones that you are still the same
person you always were. Let them know if it's all right to ask
questions or tell you how they feel. Sometimes just
reminding them to be there for you is enough.
It's also okay if you don't feel comfortable talking about your
cancer. Some topics are hard to talk about with people you
are close to. In this case, you may want to talk with a member
of your health care team or a trained counselor. You might
want to attend a support group where people meet to share
common concerns.
Some families have trouble expressing their needs to each
other. Other families simply do not get along. If you don't
feel comfortable talking with family members, ask a member
of your health care team to help. You could also ask a social
worker or other professional to hold a family meeting. This
may help family members feel that they can safely express
their feelings. It can also be a time for you and your family to
meet with your entire health care team to solve problems and
set goals. Although it can be very hard to talk about these
things, studies show that cancer care is a smoother process
when everyone remains open and talks about the issues.
Often, talking with someone close to you is harder than
talking with anyone else. Here's some advice on talking with
loved ones during tough times.
Spouses and Partners
- Try as much as you can to keep your relationship as it
was before you got sick.
- Talk things over. This may be hard for you or your
spouse or partner. If so, ask a counselor or social
worker to talk with both of you together.
- Be realistic about demands. Your spouse or partner
may feel guilty about your illness. They may feel
guilty about any time spent away from you. They also
may be under stress due to changing family roles.
- Spend some time apart. Your spouse or partner
needs time to address their own needs. If these needs
are neglected, your loved one may have less energy
and support to give. Remember, you didn't spend
24 hours a day together before you got sick.
- Body changes and emotional concerns may affect
your sex life. Talking openly and honestly is key. But
if you can't talk about these issues, you might want to
talk with a professional. Don't be afraid to seek help
or advice if you need it.
Children
Keeping your children's trust is very
important at this time. Children can
sense when things are wrong. So it's
best to be as open as you can about
your cancer. They may worry that they
did something to cause the cancer.
They may be afraid that no one will
take care of them. They may also feel that you are not
spending as much time with them as you used to. Although
you can't protect them from what they might feel, you can
prepare them for these feelings.
"My illness became a vehicle for teaching my children
lessons I'd want to teach them if I'd never been sick. Instead
of fighting or trying to hide all the challenges, I used them
to teach my kids the value of delayed gratification, how to
find hope when the chips are down, that you are the same
person inside even if your appearance changes, and that you
try your best and forgive yourself if things don't go well.
My treatments became a powerful way to say to my
children, 'I love you and will do whatever I must to
be with you.'" - Wendy Harpham, M.D., author of
When a Parent Has Cancer: A Guide to Caring
for Your Children |
Some children become clingy. Others get into trouble at
school or at home. It helps to keep the lines of communication
open. Try to:
- Be honest. Tell them you are sick and that the
doctors are working to make you better.
- Let them know that nothing they did or said caused
the cancer. And make sure that they know that they
can't catch it from you.
- Reassure them that you love them.
- Encourage them to talk about their feelings.
- Tell them it's okay to be upset, angry, or scared.
- Be clear and simple when you talk, since children can
focus only briefly. Use words they can understand.
- Let them know they will be taken care of and loved.
- Let them know that it's okay to ask questions. Tell
them that you will answer them as honestly as you
can. In fact, children who aren't told the truth about
an illness can become even more scared. They often
depend on their imagination and fears to explain the
changes around them.
Teenagers
Teenagers have some of the same needs as those of younger
children. They need to hear the truth about an illness. This
helps keep them from feeling needless guilt and stress. But
be aware that they may try to avoid the subject. They may
become angry, act out, or get into trouble as a way of coping.
Others simply withdraw. Try to:
- Give them the space they need. This is especially
important if you are relying on them more to help
with family needs.
- Give them time to deal with their feelings, alone or
with friends.
- Let them know that they should still go to school and
take part in sports and other fun activities.
If you have trouble explaining your cancer, you might want
to ask for help. A close friend, relative, healthcare worker, or
trusted coach or teacher could help answer your teenager's
questions. Your support group, social worker, or doctor can
also help you find a counselor or psychologist.
"It's a roller coaster ride, so we just ride the roller coaster.
I've got the whole family prepared, and that's what you
have to do when you have cancer. Things are going well
one minute, then change to really bad the next." - Gwen |
Adult Children
Your relationship with your adult children may change now
that you have cancer again. You may have to rely on them
more. And it may be hard for you to ask for support. After
all, you may be used to giving support rather than getting it.
Adult children have their concerns, too. They may start to
think about their own mortality. They may feel guilt, because
of the many demands on them as parents, children, and
employees. Some may live far away or have other duties.
They may feel bad that they can't spend as much time with
you as they would like. Often it helps to:
- Share decision-making with your children.
- Involve them in issues that are important to you.
These may include treatment choices, plans for the
future, or activities that you want to continue.
- If they aren't able to be there with you, keep them
updated on your progress.
- Make the most of the time you have. Share your
feelings with them.
Try to reach out to your adult children. Openly sharing your
feelings, goals, and wishes will help them adjust. It will also
help prevent problems in the future. Remember, just as
parents want the best for their children, children want the
best for their parents. They want to see your needs met
effectively and with compassion. Your children don't want to
see you suffer.
Looking for Meaning
At different times in life, it's natural for people to look for
meaning in their lives. And many people with recurrent
cancer find this search for meaning important. They want to
understand their purpose in life. They often reflect on what
they have gone through. Some look for a sense of peace or a
bond with others. Some seek to forgive themselves or others
for past actions. Some look for answers and strength through
religion or spirituality.
Being spiritual means different things to different people.
It's a very personal issue. Everyone has their own beliefs
about the meaning of life. Some people find it through
religion or faith. Some find it by teaching or through
volunteer work. Others find it in other ways. Having cancer
may cause you to think about what you believe - about God,
an afterlife, or the connections between living things. This
can bring a sense of peace, a lot of questions, or both.
You may have already given a lot of thought to these issues.
Still, you might find comfort by exploring more deeply what
is meaningful to you. You could do this with someone close
to you, a member of your faith or spiritual community, a
counselor, or a trusted friend. Or
you may find that talking to others
at gatherings and services at places
of worship is helpful.
"I really struggled with my
diagnosis. I couldn't understand
why I had to go through this one
more time. Although I wouldn't
consider myself religious, I found
that prayer helped me. I began to
understand that I had a purpose
in life, and that the cancer was
just part of the plan." - Bill |
Or you may just want to take time for yourself. You may want
to reflect on your experiences and relationships. Writing in a
journal or reading also helps some people find comfort and
meaning. Others find that prayer or meditation helps them.
Many people also find that cancer changes their values.
The things you own and your daily duties may seem less
important. You may decide to spend more time with loved
ones or helping others. You may want to do more things
outdoors or learn something new.
A Time To Reflect
"I've been through this once,
and I'll get through it again.
I just wish I didn't have to, but
that's the challenge before me." - Janet |
This is a hard time in your life. Living with cancer is tough,
especially when it has come back. You battled the disease
once, and now you must face it again. But you're more
experienced this time around.
Use this knowledge to your advantage. Try to remember
what you did before to cope. Reflect on what you might have
done differently. By looking back in this way, the hope is that
you may find new strength. And that this strength can help
carry you through each day, and through the coming weeks
and months.
"Think only of today, and when tomorrow comes, it will be
today, and we will think about it." - St. Francis de Sales |
Resources
National Cancer Institute
Provides current information on cancer prevention, screening, diagnosis,
treatment, genetics, and supportive care. Lists clinical trials and specific
cancer topics in NCI's Physician Data Query (PDQ®) database.
|
Cancer Information Service
Answers questions about cancer, clinical trials, and cancer-related services
and helps users find information on the NCI Web site. Provides NCI printed
materials.
|
Administration on Aging
Provides information, assistance, individual counseling, organization of
support groups, caregiver training, respite care, and supplemental services.
Centers for Medicare and Medicaid Services Provides information for
consumers about patient rights, prescription drugs, and health insurance
issues, including Medicare and Medicaid.
Equal Employment Opportunity Commission Provides fact sheets about job
discrimination, protections under the Americans With Disabilities Act, and
employer responsibilities. Coordinates investigations of employment
discrimination.
Toll-free: |
1-800-669-4000 |
TTY: |
1-800-669-6820 |
Visit: |
www.eeoc.gov |
U.S. Department of Labor Office of Disability Employment Policy Provides
fact sheets on a variety of disability issues, including discrimination,
workplace accommodation, and legal rights.
American Cancer Society
National Cancer Information Center Available to answer questions 24
hours a day, 7 days a week.
CancerCare
Offers free support, information, financial assistance, and practical help to
people with cancer and their loved ones.
Kids Konnected
Offers education and support for children who have a parent with cancer or who
have lost a parent to cancer.
National Coalition for Cancer Survivorship
Provides information on cancer support, employment, financial and legal issues,
advocacy, and related issues.
National Employment Lawyers Association
Can help find a lawyer experienced in job discrimination cases.
NeedyMeds - Indigent Patient Programs
Lists medicine assistance programs available from drug companies. NOTE: Usually
patients cannot apply directly to these programs. Ask your doctor, nurse, or
social worker to contact them.
Patient Advocate Foundation
Offers education, legal counseling, and referrals concerning managed care,
insurance, financial issues, job discrimination, and debt crisis matters.
The Wellness Community Provides free psychological and emotional support
to cancer patients and their families.
For more information
The following free booklets may be helpful if your loved one is
receiving cancer treatment:
These booklets are available from the National
Cancer Institute (NCI.) To learn more about the
specific type of cancer you have or to request any of
these booklets, visit NCI's Web site (www.cancer.gov).
You can also call NCI's Cancer Information Service
at 1-800-4-CANCER (1-800-422-6237) to speak with
an information specialist.
We would like to offer our sincerest gratitude to the
extraordinary caregivers, health professionals, and
scientists who contributed to the development and
review of this publication. |
|