Character cannot be developed
in ease and quiet. Only through experience
of trial and suffering can the soul be strengthened,
vision cleared, ambition inspired, and success
— Helen Keller
There is much written about
diagnosis and treatment of breast cancer.
However, what happens to a cancer survivor
goes far beyond that moment of relief when
treatment is finally over. For some, the
treatment is continuous, so even that milestone
does not come. Life goes on.
the National Cancer Institute (NCI), more
people are surviving cancer than ever before.
The NCI estimates that there are now two
million breast cancer survivors in the
United States today. While survivorship is
the goal of treatment, reaching and living
it does not mean life becomes less complicated.
do I become a breast cancer survivor?
The short answer, immediately. From
the very instant you receive your diagnosis
of breast cancer until you take the very
last breath of life, you are a survivor.
matter if you are still in treatment,
have all your hair back or at what point
anyone else starts their count.
may be times when you don’t feel
like a survivor—times when you
me?” or “why now?” You
may even ask, “where’s God
in all of this?” You may never
know the answers to those questions.
In fact, some people respond to that
way of thinking by asking, “why
NOT me?” and “why
NOT now?” Who ever heard of a good
time to be diagnosed with breast cancer?
Dealing with these questions and your
feelings is part of the healing process.
happen in an instant, and sometimes it
takes a long time to come to a place
of acceptance. No matter how long the
healing and acceptance takes, you are
and will remain a survivor.
of changes will I face as a breast cancer
There are physical changes. Breast
surgery (including reconstruction) changes
the appearance of your body. Sometimes
these changes are minimal, other times
more dramatic. Either way, your body
holds reminders of your experience with
breast cancer in the surgical scars.
Physical problems can happen because
of the cancer itself or from the treatments.
Surgery, chemotherapy and radiation are
strong treatments and can have physical
effects months or even years after treatment.
For example, radiation therapy can damage
surrounding tissue, and chemotherapy
can be toxic to the heart and other organs.
There can be changes in sexuality,
loss of desire, premature menopause, infertility
and more. There are other physical problems
that arise as a result of treatment,
such as persistent fatigue and pain.
You may have some of these symptoms or
none of them.
There may be changes in
your quality of life that need to be addressed
and accepted. For example, you may require
medications that affect how you feel
physically and emotionally, and you
may not be able to do everything that you
once were able to do. Your memory may
not serve you as well as it did before
chemotherapy. Some refer to this as “chemo-brain,” and
it may be a temporary condition that
resolves after chemotherapy.
have questions about what doctor to
see if you are not feeling well, have
an ache or pain for which the origin
is unclear. Many survivors make positive
lifestyle changes, such as eating healthier,
exercising, reducing stress.
Your emotional “balance” or “compass” may
change as a result of how you are able
to deal with having breast cancer.
You may discover that you are more
sensitive and have your feelings hurt
easier. You may become stronger emotionally
and not let things bother you as they
may have in the past. The process of
dealing with a diagnosis and treatment
for any cancer is stressful for everyone.
Sometimes coping with cancer
can trigger depression, post-traumatic stress
disorder, and a fear of recurrence. Or, you
may come out of the cancer experience stronger
than ever before.
Some of your relationships
with loved ones, friends and others may
also change. These changes can occur in you
for any number of reasons, such as changed
body image, fear of intimacy, not
wanting to be a burden and not knowing how
to deal with the pressures that accompany
the reality of being a cancer patient
and survivor. Your relationships
always change at the same pace as
you do. Your personal relationships may
evolve and grow stronger, or they
may get “stuck” and
eventually end. Feeling comfortable
with yourself, wherever you are in
the cancer journey, will help you
to enjoy the relationships you share.
may be financial hardships that linger.
Cancer treatment is expensive, even
with health insurance. Medical bills
do not disappear the day you are
finished with treatment. Sometimes
it can take years to pay for medical
expenses, leaving cancer survivors
deep in debt. Some people worry about
losing their jobs or being discriminated
against because they have had cancer.
This can increase stress and anxiety
and interfere with daily living.
may be more prone to second cancers. People
who have survived one cancer have almost
twice the risk of developing a second cancer
as the general population has of developing
cancer. This could be due to whatever reasons
caused the first cancer, or it could be
a result of chemotherapy and radiation
Making the transition from
being a patient on active treatment to
long-term follow-up and survivorship
can be difficult for some cancer
survivors, especially if they are
having trouble coping with the physical,
emotional and financial challenges.
As survivors, we may want life to
return to what it was like before, “back
to normal.” The
fact is that our lives have changed
forever, and we need to discover a
survivors talk about how their experience
with cancer has given them “new
life,” a different set
of priorities, the motivation
to do something they’ve
always wanted to do (travel,
climb mountains, skydive, paint,
spend time writing, enjoying
family time). We encourage you
to persevere. As best you can,
try to find a way to turn the
difficult experience into something
that brings about a positive
How do I deal with fear
Wondering whether your breast
cancer will return is normal.
Over time you can find ways to
cope with the fear. Talking to
other survivors, family and friends,
counselors, or health professionals
in a supportive environment can
be helpful. Being part of a support
group may be helpful as well. Seeking
individual and spiritual counseling
is another way that people deal with
Sometimes reading “survivor
be inspiring, comforting and
encouraging. Relaxation techniques and imagery can help
to ease negative thoughts or
feelings. Reaching out to others through participation in volunteer
activities may also be a way
for a survivor to feel stronger and more in control. If
you find your fear overwhelms
you and affects your daily activities, you may want to seek
Is it difficult
for breast cancer survivors to obtain health
An issue that can come as a surprise
is the enormous challenge some
cancer survivors have in securing health
insurance. Even after you reach the
significant milestone of being cancer-free
for five years, you may find yourself
in a fight for coverage. Many breast
cancer survivors are not eligible
for individual health insurance coverage,
or are unable to find coverage that
Your best chance of
obtaining affordable health insurance
is through an employer that offers group
health insurance as a benefit, or through
coverage. See Insurance Issues on page
140 for more information and suggestions
on how breast cancer survivors can obtain
Which doctor do I call
when I have questions about my health?
Good question. There are some people
who do not have a “regular doctor.” You
will need to decide which doctor will provide
your cancer follow-up care and which one(s)
will provide other medical care. For follow-up
breast cancer care, this may be the same
doctor who provided your cancer treatment.
For other medical care, you can continue
to see your family doctor or medical specialist
as needed. If you don’t have a family
doctor, your oncologist may be able to provide
you with a referral, or ask people in your
community for a recommendation.
Depending on where you
live, it may make more
sense to get cancer follow-up
care from your family doctor
than to travel long distances
to see an oncologist. No
matter who you choose as
your doctor, try to find
those with whom you feel
comfortable. Make sure
any doctors you see have
updated copies of your medical
How often should I be seen
for follow-up care?
Follow-up care will be different
for each breast cancer survivor based
on the type of breast cancer, the
type of treatment, and the person’s general health. The
American Society of Clinical
Oncology (ASCO) offers the following guidelines for follow-up
- A medical
discussing possible symptoms) and
physical exam every
3-6 months for the first three
- A medical history
and physical exam every 6-12 months during
the next two years;
- A medical history, physical
exam, mammogram, clinical
breast exam and pelvic exam (including Pap smear) every year after
the first five
years. After lumpectomy, the first mammogram
should be six months after the end of radiation
doctors will order more tests (such as blood
tests, tumor marker tests,
bone scans, ultrasound,
chest X-ray or CT scans) than
others at each follow-up visit.
You should decide with your doctor
which follow-up plan you prefer.
Some women and their doctors
prefer an aggressive plan (more
tests) after initial treatment
in order to feel more in control.
This may change later as the
inconvenience, expense and anxiety
start to outweigh the possible
benefit (or not). In addition, check
with your health insurance plan to
see what kind of follow-up is covered,
for how long, and if there are any
restrictions on which doctor(s) you
In terms of scientific evidence,
there is no difference in overall
survival between aggressive (more tests)
and more moderate follow-up screening
programs. Also, studies show that
overall survival is not affected by when a
recurrence is detected, but this could change
as new treatments are developed.
To Ask Your Doctor About Follow-up
- How often should
I see the doctor for a routine
- What follow-up
tests, if any, should be done?
- How often should
these tests be done?
- What symptoms should
I watch for?
- If I develop any
of these symptons, who should I
Adapted from Follow-Up
Care: Questions and Answers, from
the National Cancer Institute, 800.4.CANCER
can I get involved and be active in breast
There are many ways to be involved
and active in supporting breast
cancer issues. Often, a good place
to start is in your own community.
Getting involved in a support group
allows you to meet others who have
also had breast cancer (or are currently
being treated). Meeting and sharing
with others will give you opportunities
to learn about what is being done
to support breast cancer locally. You
can participate in local events such
as health fairs, talk to groups about
your breast cancer experience, volunteer
for fundraising events that support
breast cancer programs or research.
There are also statewide and
national organizations that provide many
different ways for you to become an advocate
for breast cancer. For more information on
how to get involved in North Carolina and
nationally, see Breast
if I don’t want to get
involved or be active in breast cancer
This is entirely
normal, too. Some
people find that
breast cancer leads
to a desire to get
more involved in
other issues important
in their lives, but not always
breast cancer issues. Other
people find it easier to
walk away from the whole
experience and try to forget
that it ever happened. Other
people find that they can’t do enough to fight
the disease (or
fight back from what it does to people’s lives), so they find ways
to get involved.
Some volunteer in their community, others participate on the national
level. What is
important is that you do what is best and feels right for you.
just one person. How can I make a difference?
You’d be amazed at what “just
one person” can
do. For example,
a breast cancer
founded the Susan
G. Komen Breast
in honor of a
promise she made
to her sister,
who lost her
life to breast
cancer. It only
takes one person
to make a difference
in someone else’s
life. When all
one persons” come
impact is mighty
The impact of
your words of
as an inspiration
point for others.
You may not ever
realize it, but
you make a difference
just by being
who you are.
can wear pink
events in your
talk to someone
going through breast
Volunteer for a peer
such as Women Building
Bridges, Reach to Recovery
or others. There are other ways you
can volunteer and reach out to help
others. The benefits of giving of your
time and talents to another person
or organization can return a thousand-fold— whether
you spend five
minutes talking with someone, two hours volunteering to work a booth at
event or twenty years fighting for a cause.
Share your story
and your time as
much as you feel
comfortable and able
to do. Just as you
may have been encouraged
and inspired by the
experiences of other
survivors, you have
the opportunity to
do the same for others
who are at the beginning
of the journey. You can help,
and you can make a difference.
(and men) tend to take caregiving,
tending to others’ needs,
and volunteering further than one
person can physically or emotionally
handle — to the point of exhaustion
Find a comfortable
balance between living your own life
and doing for others.
We encourage you to take inventory
of what matters most
Recognizing that life is
precious and fragile is part
of the awakening you may
experience when faced with
a serious and life-threatening disease.
We aren’t born with guarantees
that our lives
will always be perfect or challenge-free. It’s often the trials
that help us grow and become the person we are.
No one wishes
for or anticipates
Many of us go
about our daily
living without giving
it a second thought—until it
us or to someone we care about. What’s good is that you have a chance
to make the
changes necessary to live the life you want to live, to do the things you’ve
to do. You can choose to do whatever is best for your life.
brings a new appreciation
for life and all that
each moment holds.
It isn’t always easy or simple, but
you can survive
American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
ACS offers a Cancer Survivor’s Network
by phone or online, 24 hours/day. Call
877.333.HOPE for talk shows and survivor
stories or see the web site.
Provides support, public education and
advocacy to assist survivors to reclaim
their lives after cancer. Site has resources,
survivor stories and more for survivors,
family and healthcare professionals.
Lance Armstrong Foundation
512.236.8820 or 866.235.7205
LAF’s mission is to enhance the quality
of life for those living with, through
and beyond cancer. Web site includes survivorship
facts, stories, caregiver resources, and
information on long-term survivorship.
Living Beyond Breast Cancer
610.645.4567 or Survivors Helpline at 888.753.5222
Empowers women with breast cancer to live
as long as possible with the best quality
of life. Offers programs, resources, conferences,
newsletter, Young Survivors network and
interactive message boards. Survivor’s
Helpline is staffed by breast cancer survivor
Cancer Information Service
One of the best resources available for
cancer patients, this government organization
provides the toll-free hotline above in
English and Spanish. Has free booklets
about follow-up care and life after cancer
National Cancer Survivors Day Foundation
Promotes America’s nationwide, annual
celebration of life for cancer survivors,
their families, friends and oncology teams
(first Sunday in June).
National Coalition for Cancer Survivorship
Provides free booklet “What Cancer
Survivors Need to Know About Health Insurance,” and
audiotape program, “The Cancer Survivor’s
Toolbox,” that focuses on key cancer
survival skills for survivors, family members
and caregivers. Call 877.TOOLS.4.U or see
Office of Cancer Survivorship at National
This office conducts and oversees cancer
survivorship research. Call or see the
web site for a list of current research
projects in cancer survivorship.
SHARE: Self-help for Women with Breast
or Ovarian Cancer
212.719.0364 or 866.891.2392
Survivor-led organization has mission to
ensure that no one faces breast or ovarian
cancer alone. Offers support from diagnosis
through treatment and beyond.
Susan G. Komen Breast Cancer Foundation
Provides information on breast cancer as
well as survivors’ stories (www.komen.org/survivor).
Four affiliates in North Carolina (Komen
NC Triangle, Komen North Carolina Triad,
Komen NC Foothills and Komen Charlotte)
host annual Race for the Cure and other
Information Network Against Breast Cancer
Mission is to increase public awareness
about breast cancer and the resources available
to women. Has information on breast health,
breast cancer, peer support and referral
services, and healthcare options.
Y-ME National Breast Cancer Coalition
Provides breast cancer information and
support to women with breast cancer, their
loved ones and caregivers. Also publishes
bi-monthly Hotline Newsletter.
Young Survival Coalition
Focuses on the issues and challenges faced
by women age 40 and younger who are diagnosed
with breast cancer.
Books and More
Breast Cancer: A Common-Sense Guide to
Life After Treatment, by Hester Hill
Schnipper (2003). Schnipper, a breast cancer
survivor and an oncology social worker,
helps prepare women for life after breast
cancer with information covering all aspects
of the experience.
Art and Writing by Women with Breast
Cancer, Intro by Jill Eikenberry
(1998). Celebrates the essence of women
with breast cancer. Powerful and moving.
View sample online and order at www.breastcancerfund.org.
Cancer Book of Strength and Courage:
Inspiring Stories to See You Through
Your Journey, by Judie Fertig Panneton,
Ed. (2002). Forty-six women share their
stories about cancer, addressing depression,
looking back on facing cancer.
Cancer Journal: A Century of Petals,
by Juliet Wittman (1994). Written by a
journalist about her diagnosis, treatment
and her relationship with her husband and
10-year old daughter.
Cancer? Let Me Check My Schedule! by JoAnn Loren, Ed., (2000). Addresses
difficulties encountered by women in maintaining
their professional lives and meeting their
personal goals while coping with breast
Come Here Where I Am? The Poetry and
Prose of Seven Breast Cancer Survivors,
by Rita Busch, Ed., Helen Rash, Katherine
H. Traynham, Judy T. Klevins (1998). Demonstrates
the healing power of words from a breast
cancer support group who express their
feelings as they face diagnosis, treatment
Has Its Privileges: Stories of Hope and
Laughter, by Christine Clifford
(2002). Author shares a collection of stories
and anecdotes from her fellow survivors
that go from funny to moving.
Almanac: Charting Your Journey, edited
by Barbara Hoffman, JD (1998). Reference
volume from the National Coalition for
Cancer Survivorship has information about
health insurance, disability, employment
rights, legal, financial and survivorship
issues. Call 877.NCCS.YES or www.canceradvocacy.org.
with Cancer. Bi-monthly magazine
for anyone affected by cancer. Includes
survivor stories, support and nutrition
as well as news briefs, financial and treatment
issues and resources. May find free copies
in clinics. Call 615.790.2400.
the “Can” in
Cancer, by Nancy Emerson, Pam Leight,
Susan Moonan and Terri Schinazi (2005).
Four long-term survivors combine personal
stories and experiences with practical
tips for coping with side effects, information
on tests and procedures, emotional and
spiritual encouragement, and advice on
how to let others help during this difficult
time. See www.findingthecanincancer.com.
You Cry, by
Betty Rollin (2000). Rollin, an NBC News
correspondent discusses her struggle
with breast cancer in the 1970s—coping
with the news, undergoing a mastectomy,
and recovering her emotional health.
Incredible Battle for Survival at the
South Pole, by Jerri Nielson and Mary
Anne Vollers (2001). Tells the story
of a doctor who was diagnosed with breast
cancer during her stay in the Antarctic.
I’m Alive and the Doctor’s
Dead: Surviving Cancer With Your Sense
of Humor and Your Sexuality Intact, by
Susan Buchanan (1998). A book for any woman
facing a medical verdict she does not want
to hear. Assures women that there is life—and
lots of it—during and after cancer.
Beyond Breast Cancer: A Survivor’s
Guide for When Treatment Ends and the Rest
of Your Life Begins, by Marisa C. Weiss,
MD, and Ellen Weiss (1998). Focuses on
the physical, emotional, social, legal
and financial issues women face after being
diagnosed with breast cancer. Call 610.645.4567
or see www.lbbc.org.
Women, Cancer and Community. This
magazine includes informative and well-written
articles that address many issues of
breast cancer and women’s
health. Includes survivor stories, medical
updates, research findings, resources
and much more. See www.mamm.com for more
. . . I’m
Having a No Hair Day: Humor and Healing
for People With Cancer, by Christine
Clifford (1996). Using her own experience
with breast cancer, the author shows
how the power of laughter and positive
thinking promote recovery and growth.
Call the Cancer Club at 800.586.9062
or online at www.cancerclub.com.
Picasso’s Woman: A Breast Cancer
Story, by Rosalind MacPhee, Kathy LaTour
and Deborah Baker (Ed.)(1996). A personal
memoir of MacPhee’s battle with breast
cancer told as a survival “adventure” by
the poet, medic and hiker. Reveals much
about self-image and the difficulties of
coming to terms with an altered body.
of Hope: Conquering Breast Cancer: 52
Inspirational Stories of Strength, by
Marcia Stevens Sherrill and Nora Feller
(1998). Includes passages from both male
and female breast cancer survivors, from
social workers, teachers, activists and
artists to celebrities including Julia
Child, Linda Ellerbee and Betty Ford.
From the Heart: Letters of Hope and Inspiration
from Survivors of Breast Cancer, by Ina L. Yalof (1996). Containing
nearly 100 actual letters from breast cancer
survivors, this work is a gift of life
from women who have rediscovered their
for the Mammogram: Fighting Cancer with
Faith, Hope and a Healthy Dose of Laughter, by Laura J. Walker (2000). Encouragement
through humor with doses of hope, courage
of Warrior Women: 30 Courageous Breast
Cancer Survivors, by Melissa Springer,
with Marcia Ann Gillespie (2003). Photographs
and personal vignettes of breast cancer
survivors, captured by photo-journalist
Association of Cancer Online Resources
Has online discussion and support groups
for people with cancer. Includes several
breast cancer-related groups and a long-term
survivors’s discussion list (“LT-SURVIVORS”).
Breast Cancer Answers
Contains art gallery, personal stories
from breast cancer survivors and links
to information, support, treatment and
ways to improve quality of life.
Breast Cancer Support
Online support for breast cancer survivors.
Provides research updates and information
from breast cancer experts on a broad range
of breast cancer topics. Holds regular
chats with oncologists on different topics.
Humorous web site by breast cancer survivors.
Recommended only for those who are ready
to laugh through, and at, the cancer experience.
Irreverent and a little off-color.
Cancer Survivors Network
A section of the American Cancer Society’s
web site created specifically for cancer
survivors. Has stories and personal experiences,
chatrooms, discussion forums, and lists
Cancer Survivors On-Line
Many links to resources for cancer survivors.
Hosted by Joni Rodgers, lymphoma survivor
and author of Bald in the Land of Big Hair,
this site gives encouragement and information
Easy to navigate with information on a
variety of breast health and breast cancer
topics. List of links to resource organizations
and an e-newsletter.
Living With It
This Aventis Pharmaceuticals site provides
basic cancer information as well as tips
on diet, exercise, lifestyle and money
matters. Also in Spanish.
Learn about others’ experiences with
cancer and share your own.