Continuing To Care for Your Health
What You Can Expect
After you have been treated for cancer, you will have two ongoing health
needs. First, you'll want to take the health steps that doctors suggest
for anyone your age. Second, you'll have special needs for caring for your
body based on your type of cancer, treatment, and current state of health.
(See "Briefs.")
Other long-term health needs for cancer survivors differ from person to
person. In addition to regular checkups, you may need rehabilitation or
home care. Some survivors may need help in dealing with emotional or sexual
problems, while others may seek pain control therapy. And more cancer treatment
sometimes occurs. To get a good picture of your individual needs, ask your
doctor. He or she can let you know what you need to do this year-and in
the future-to take care of your health. The following stories highlight
some of the most common issues for cancer survivors.
- "I had expected that leaving the hospital after cancer treatment
would be the happiest day of my life. When that time came, though, I was
actually more afraid than happy. I felt very alone, and I missed the support
of being watched over and cared for by the medical team. My social worker
said that this was a common reaction, but I remember that my family had
a hard time understanding it." -Jack C.
- "In the first couple of years after my recovery, the thing I hated
most was going in for my checkups. Just seeing the hospital again reminded
me of a part of my life I'd rather have forgotten. I had an almost physical
reaction to the sounds and smells of the place. But more than that, those
visits reminded me that I'd been sick and that my cancer might recur. In
my daily life, I'd kept those thoughts out of my mind.
- Fortunately, it's better now. Maybe I've just gotten used to the routine,
and I also understand how important these checkups are to my health."-Janet
V.
- "I find I walk a fine line between watching for signs of recurrence
or long-term effects of my radiation therapy and going overboard. I never
used to be like this, but it's hard not to be scared by changes that might
mean problems. My first doctor was not very sympathetic about my concerns,
so I found another doctor who is. She understands, and she doesn't tell
me 'it's all in your head.' " -Louise F.
- "I'm in a support group for cancer survivors, and we have people
with all kinds of cancers who've made all kinds of adjustments: living with
artificial limbs, ostomies, breast changes, energy loss, chronic pain. But
we all have one thing in common. At one time or another we each have been
so angry that this happened to us. Before I joined the group, my anger was
having as much of a negative effect on my life as my disability. Talking
about it, and seeing how others cope, helped me put things in perspective."-Sacha
R.
- "When I think about my cancer treatment, I almost feel like it
began when I left the hospital after surgery. Much of my care took place
at home-for a while my room looked like a hospital. Now I'm back to the
hospital some times for radiation therapy to control my pain. I'm getting
used to the fact that my cancer is more like a lifelong, chronic disease
that I need to manage than something the doctors can 'cure' once and for
all. "-Irene L.
- "My family wonders if it's a waste of time and money for me to
get yearly checkups for the colon cancer I had 15 years ago. But I feel
that I'm doing something important for my health."-Rhea S.
Briefs
Basics of Health Care for Cancer Survivors
- Get regular checkups. In general, people who have been treated for cancer
return regularly to the doctor every 3-4 months at first, and once or twice
a year later on. Ask your doctor how often you should be rechecked.
- Be alert to signs of a possible return of cancer and long-term effects
of treatment. Ask your doctor to explain what symptoms should be watched.
- Get tested as needed for other cancers. Your doctor can tell you how
often you should have tests to detect breast cancer and colon cancer. With
early detection, these cancers often can be controlled.
- Have good health habits: Eating right and getting enough sleep and exercise
will help you feel better.
Tips for Managing Your Care
- Keep accurate, up-to-date records of all the medical care you receive
for cancer and other conditions. Future decisions about your care may depend
on how you have been treated in the past. If you move or go to several different
doctors, no one but you will have your complete history.
- Do things you enjoy, even if you don't feel perfect. Pleasure can be
a powerful tool for health.
- Work as a partner with your doctors and other health professionals in
your continuing care. When you first were treated for cancer, you may have
taken an active part in making decisions about your care. The same active
role can help you take control of your long term health needs. The two main
steps are to ask questions and give information to your caregivers.
ASK QUESTIONS
You need information to carry out your role in managing your care. These
facts are as important to quality of care as any other aspect of treatment.
With this in mind, no question you have about your care is "dumb."
Many people bring a tape recorder, take notes, or ask a friend along to
help them remember everything that's said. It is also a good idea to bring
a list of questions when you visit your doctor. The following are some questions
you may want to ask:
- How often should I have a checkup?
- What are the signs of cancer's return or of long-term effects?
- How likely are they to occur?
- What changes might I see that are not danger signs?
- What kind of diet should I have?
- What are my treatment options for handling chronic pain, the return
of cancer, the long-term effects of therapy?
- What is the best way to talk to you about my concerns? (By phone? At
a special appointment? At a regular visit scheduled in advance to run longer?)
- Who else is available to talk with me about specific problems (e.g.
sexual concerns, care instructions, general fitness)?
GIVE INFORMATION
Doctors need to know key facts about you to prescribe the best treatments
and help keep you involved in your care. Tell them:
- What medicines you now are taking for all conditions (including over-the-counter
medicines such as aspirin or laxatives). Doctors need this information to
avoid problems when they give you a new medicine.
- About fears or concerns you have, especially those that might be keeping
you from following treatment. Talking openly may help solve the problem.
- About changes in your lifestyle. Even changes that seem minor could
affect your treatment. For example, if you quit smoking you may need a different
dose of some medicines.
- How you are feeling. Include danger signs you may have noticed as well
as any other changes that may be worrying you.
- About problems you may have and how much the doctor tells you about
your cancer. You have a right to hear as much or as little information as
you wish.
Options for Coping With Body Changes
Get help if you need it.
- Ask your nurse or the social worker at your hospital about homemaker
services, home health services, seminars and classes, rides to the hospital,
and other community aid.
Find out how to use special tools to over come disability or discomfort.
- Mechanical aids can replace many lost functions. Talk to your rehabilitation
professional.
Learn from others who have the same problem.
- Ask your local cancer support organization, social worker, or doctor's
office staff to put you in touch with other survivors. They can give you
practical tips to make your new situation easier.
Find ways to meet your needs for intimacy.
- Most survivors of any cancer can still enjoy sexual touching and sexual
closeness.
- Talk to your doctor, nurse, or therapist to learn proven ideas for solving
problems.
Focus on your best features.
- Make the most of them with makeup, clothes, or accessories. Feel good
about yourself.
Find new shopping sources for products that help you look better.
- Ask your local cancer support organization, your social worker, and
other survivors for ideas and addresses (see Resources)
.
Resources
ADDITIONAL READING
Cancer patients, their families and friends, and others may find the
following booklets useful. They are available free of charge by calling
the Cancer Information Service (1-800-4-CANCER) .
- Chemotherapy and You: A Guide to Self-Help During Treatment
Explains chemotherapy and addresses problems and concerns of patients undergoing
this treatment.
- Datos sobre el tratamiento de quimioterapia contra el cancer
Introduces chemotherapy to Spanish-speaking persons.
- Eating Hints for Cancer Patients
Provides recipes and tips that help patients meet their needs for good nutrition
during treatment.
- El tratamiento de radioterapia: guia para el paciente durante el
tratamiento
Provides an explanation of radiation therapy for Spanish-speaking persons.
- Radiation Therapy and You: A Guide to Self-Help During Treatment
Explains radiation therapy and addresses concerns of patients receiving
radiation treatment.
- Taking Time: Support for People With Cancer and the People Who Care
About Them
Discusses the emotional side of cancer- how to deal with the disease and
to learn to talk with friends, family members, and others about cancer.
- What Are Clinical Trials All About?
Explains clinical trials (studies of new cancer treatments) to help patients
decide if they want to take part in a trial.
- What You Need To Know About...
This is a series of booklets. Each provides information about a specific
type of cancer.
These booklets discuss symptoms, diagnosis, treatment, emotional issues,
and questions to ask the doctor about a number of cancer types. Some are
available in Spanish.
- When Cancer Recurs: Meeting the Challenge Again
Explains the ways that cancer may recur and discusses types of treatment
and methods of coping with recurrence.
Magazines and Journals
- Hundreds of articles on cancer are published each year. You can locate
those that appear in popular magazines and journals in the Reader's Guide
to Periodical Literature, which is available in most public libraries.
If you need help using the guide or finding an article, ask a librarian.
- You can find articles published in over 3,000 health-science journals
by looking in Index Medicus. Medical libraries, most colleges and
universities, and some public libraries carry this resource.
- You also can locate cancer-related articles published in technical journals
by using or having access to the National Library of Medicine's (NLM) MEDLARS
program. MEDLARS, in turn, provides access to CANCERLIT, a computerized
database system which contains almost 1 million citations and abstracts
of articles on cancer from technical literature published since 1963.
- Librarians in medical libraries and in libraries at nursing schools
can retrieve information stored in MEDLARS. However, if you or your doctor
want to get information using your own computer system, you can contact
NLM at the following address or telephone number:
- MEDLARS MANAGEMENT SECTION
- National Library of Medicine
- 8600 Rockville Pike
- Bethesda, MD 20894
- (301) 496-6193
- (800) 638-8480
- Your local library also may be able to do a computer information search.
If it belongs to the Federal Library System, you may be able to borrow government
publications.
ADDITIONAL RESOURCES
- Looking Good
- If you are a woman interested in making the most of your appearance,
contact the Look Good, Feel Better program through local American Cancer
Society offices or at 1-800-395-LOOK.
- If you are over 65, have had a mastectomy and want reconstructive surgery
or a prosthesis, you may want to contact your local Medicare office. Medicare
covers either of these if necessary due to a mastectomy. The coverage is
the same in all states.
- If you plan to buy a cosmetic aid, you may want to contact your local
American Cancer Society unit, which may have a list of stores that sell
them. The unit also may maintain a "wig bank," a collection of
wigs that are given free of charge to cancer patients. Or call the Cancer
Information Service at 1-800-4-CANCER, which may have a list of local stores
that sell the product you need. And check with your insurance company. Some
policies cover some cosmetic aids.
- These books on cosmetic aids also may be useful:
- Looking Up: The Complete Guide to Looking and Feeling Good for the Recovering
Cancer Patient, Suzy Kalter. McGraw-Hill: 1987- Provides tips (with photos)
on hair care, wigs, makeup, and exercise. (Out of print; check your local
library to find a copy.)
- Buyer's Guide to Wigs and Hairpieces. This 2-page summary is available,
as well as additional literature as needed. Contact Ruth L. Weintraub Co.lnc.,
420 Madison Avenue, Suite 406, New York, NY 10017, (212)838-1333.
- A full-color catalogue of wigs for medical purposes is available nationwide.
Contact Jacques Darcel, 50 West 57th Street, New York, NY 10019, (212)753-7576.
Sexual Concerns
- Cancer and cancer treatment may affect sexual relationships. Although
treatment for cancer sometimes causes sexual problems, often a patient's
or partner's feelings about cancer and sex can make a difference. Your doctor,
nurse, or social worker may be able to help. They also may be able to help
you find a sex therapist who helps couples understand their sexual problems
and suggests ways to deal with them. The following association can provide
names of sex therapists in your area:
- American Association of Sex Educators, Counselors, and Therapists (ASECT)
Suite 1717
435 North Michigan Avenue
Chicago, IL 60611
(312) 644-0828
If you write ASECT, be sure to include a self-addressed, stamped envelope
and a $3.00 handling fee.
- The American Cancer Society has two publications on sexuality that may
be helpful:
- Sexuality and Cancer: For the Woman Who Has Cancer and Her Partner
- Sexuality and Cancer: For the Man Who Has Cancer and His Partner
Contact your local unit or the national office at 1-800-ACS-2345 to get
copies.