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67

When Cancer Returns

JASCAP
JEET ASSOCIATION FOR SUPPORT TO CANCER PATIENTS, MUMBAI, INDIA
This booklet is adapted from the publication (When Cancer Returns – February 2019) of the
National Cancer Institute, USA (the originator) and the source is the Web site of the National
Cancer Institute (http://www.cancer.gov). The adaptation/translation and any changes to the
content are the sole responsibility of JASCAP.

Publisher: JASCAP, Mumbai 400


055 Edition: March 2019
CONTENTS
When Cancer Returns
Adjusting to the News
Why and where cancer returns
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

Managing the Side Effects of Your Treatment


• Comfort Care
• Pain Control
• Other Ways To Treat Pain
• Fatigue
• Nausea and Vomiting
• Nutrition
• Sleep Problems
• Physical Therapy
• Complementary and Alternative Medicine

Your Feelings
• Stress
• Hope
• Gratitude
• Anxiety
• Fear
• Sadness and Depression
• Anger
• Guilt
• Loneliness
• Denial
• Ways You Can Cope

Setting Goals
• Family and Friends
• Family Meetings
• People Close to You

Looking for Meaning


A Time To Reflect
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When Cancer Returns

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.

Why and Where Cancer Returns


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).
• 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.
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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.

Talking With Your Health Care Team


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.

Other Tips for Talking With Your Health Care Team

• 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.
• 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.
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Treatment Choices
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:

• A local recurrence may be best treated by surgery or radiation therapy. This means that the doctor
removes the tumor or destroys it with radiation.
• A distant recurrence may need chemotherapy, biological therapy, or radiation therapy.

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.

Clinical Trials
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.

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?
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• 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?

Making Your Wishes Known


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

• A living will lets people know what kind of medical care you want if you are unable to speak for yourself.
• A durable power of attorney for health care names a person to make medical decisions for you if you
can't make them yourself. This person is called a health care proxy.

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.)
• 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.
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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.

Comfort Care
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.

Pain Control
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
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• Where you felt it.

Your doctor may also ask you some questions about how your pain affects your daily routine . Having your
pain managed means that you can focus on living your life and not be distracted by pain.

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.

Other Ways To Treat Pain


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.

Fatigue
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:
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• 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 and Vomiting


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.

Nutrition
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.

Sleep Problems
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)
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• 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.

Physical Therapy
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


Complementary and alternative medicine (CAM) treatment can be helpful for some people. And some
CAM treatments are safe, such as those listed for pain on page 9. 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.

Your Feelings
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.

Stress
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.
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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.

Hope
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.

Gratitude
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.

Anxiety
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.
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Fear
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.

Sadness and Depression


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.

Anger
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.
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Guilt
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.

Loneliness
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.

Denial
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.
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Ways You Can Cope


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.

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.

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
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.
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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


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.

Knowing that they are able to comfort you may 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.

Family Meetings
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.

People Close to You


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.
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• 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.

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.

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.


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• 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.

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
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.

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Words to know

Acupuncture (AK-yoo-PUNK-cher): A form of Chinese medicine that stimulates certain points on the body. It is
often done using thin needles. Before using acupuncture, ask your health care team if it is safe for your type of
cancer.

Advance directives: Legal documents that allow you to decide ahead of time how you want to be treated when
you are unable to speak for yourself. The two main types are living wills and durable power of attorney for health
care.

Biofeedback: Using a special machine, a person learns how to control certain body functions. Examples of such
body functions are heart rate and blood pressure.

Biological (bye-uh-LAHJ-uh-kul) therapy: Treatment that aims to use or restore the body’s own immune
(defense) system. It is used to fight cancer, infections, and other diseases. It is also used to reduce the side effects
that some cancer treatments cause. Also called immunotherapy.

Breakthrough pain: Pain that is sudden and intense or that is very painful for a short time. It can occur
several times a day. This can happen even when a person is taking the right dose of pain medicine.

Cancer: A term for diseases in which abnormal cells divide out of control. Cancer cells can invade nearby tissues
and spread through the bloodstream and lymphatic system to other parts of the body.

Chemotherapy (kee-moh-THAIR-uh-pee): Treatment with drugs that kill cancer cells.

Clinical trial: A type of research study that tests new methods of screening, prevention, treatment, or diagnosis of
a disease. Also called a clinical study.

Complementary and alternative medicine (CAM): Treatment used along with, or instead of, standard health
care. CAM includes methods such as acupuncture and massage. Some CAM treatments may help relieve cancer
symptoms or side effects. But not all CAM treatments are safe. And they should not take the place of standard
health care.

Diagnosis (dye-ug-NOH-sis): The name and details of your disease or health condition.

Dietitian (dy-uh-TIH-sun): A person with special training in nutrition, who can help you with choices in your diet.
They also can suggest ways to make eating easier.

Distant cancer: Cancer that has spread from the primary tumor to distant organs or lymph nodes.

Durable power of attorney for health care: This type of advance directive appoints a person (a health care
proxy) to make medical decisions for you when you can’t make them for yourself.

Health care proxy: The person you have named in an advance directive to make medical decisions for
you. This person can make health care choices for you when you can’t make them for yourself.

Health psychologist: A mental health professional who works with people and families affected by
illness.

Hypnosis: A state of relaxed and focused attention. The person focuses on a certain feeling, idea, or
suggestion.

Imagery: A method in which a person focuses on positive images in their mind.


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I.V : Short for intravenous (in-truh-VEE-nus). It means to get medicine or nutrients into the body
through a vein.

Living will: A type of advance directive. A living will is a legal document that lets people know what
kind of medical care you want if you are unable to speak for yourself.

Local cancer: Cancer that appears only in the organ where the cancer began. It has not spread beyond the
original site.

Lymph (limf) nodes: Small, bean-shaped organs that are part of the lymphatic system. Bacteria or
cancer cells that enter the lymphatic system may be found in the nodes. Also called lymph glands.

Massage therapy: Gentle rubbing of different body parts or muscles to help you relax and gain a sense
of well-being.

Metastasis (meh-TASS-tuh-sis): The spread of cancer from one part of the body to another. Cells that
have metastasized are like those in the original tumor.

Notary public: A person with authority from the courts to witness legal documents and signatures.

Oncologist (ahn-KAH-luh-jist): A doctor who specializes in treating cancer.

Oncology social worker: A social worker who specializes in helping cancer patients and their
families.

Palliative (PAL-ee-yuh-tiv) care: Care to improve the quality of life of people with a serious or life-threatening
illness. The goal of palliative care is to prevent or treat as early as possible:
• Symptoms of the disease
• Side effects caused by treatment
• Psychological, social, and spiritual problems related to the disease or its treatment. Also
called comfort care, supportive care, and symptom management.
Power of attorney: Appoints a person to make financial decisions for you when you can’t make them yourself.

Radiation (ray-dee-AY-shun) therapy: Treatment with high-energy radiation to kill cancer cells.

Recurrence (ree-KUR-ens): Cancer that has come back after a period of time during which it could not be
found. The cancer may come back to the same place as the original tumor or to another place in the body.
Also called recurrent cancer.

Recurrent cancer: See “recurrence.”

Regional cancer: Cancer that has grown beyond the original tumor to nearby lymph nodes or organs and tissues.

Relaxation techniques: Different methods, such as deep breathing and relaxing the muscles that are used to
reduce tension and anxiety and to control pain.

Second opinion: When you go to another doctor after getting a diagnosis. The second doctor looks at your test
results and examines you, just as the first one did. The second doctor may or may not make the same diagnosis.
And they may or may not recommend the same treatment. Either way, you will have more information. This may
help you decide on your treatment.

Specialist: A doctor who has studied and trained in a certain area of medicine.
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Standard treatment: In medicine, treatment that experts agree is appropriate, accepted, and widely used. Also
called standard of care or best practice.

Surgery (SER-juh-ree): A medical procedure that involves entering or cutting into the body. Surgery is used to
remove or repair a part of the body or to find out whether disease is present.

Trust: This type of legal document appoints a person you choose to manage your money for you .

Tumor (TOO-mur): An abnormal mass of tissue.

Will: This type of legal document tells how you want to divide your money and property among your heirs.

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Rs.20.00
Important
DISCLAIMER
This booklet published by JASCAP is not designed to provide medical advice or professional
services. It is intended to be for educational use only. The information provided in this booklet by
JASCAP is not a substitute for professional care and should not be used for diagnosing or treating
a health problem or a disease. Please consult your doctor for any health related problem.

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