Advanced (Metastatic) Breast Cancer and Recurrences
Courage is as often the outcome
of despair as hope; in one case we have nothing
to lose, in the other, all to gain.
— Diane DePoitiers
ADVANCED (METASTATIC) BREAST
A diagnosis of advanced breast
cancer means that cancer cells have metastasized
(spread) outside of the breast to other
parts of the body (such as the bones or other
organs) or to the lymph nodes that are not
near the breast (such as those above the
collarbone). If breast cancer spreads to
a different part of the body, it is still
regarded as breast cancer. (For example,
if breast cancer spreads to the lungs, it
is not lung cancer; it is still breast cancer.)
Advanced or metastatic breast cancer is referred
to as Stage IV breast cancer.
cancer metastasizes or spreads, it usually
goes to the bones, lungs and liver. Less
commonly, it may also spread to the brain,
spinal cord and eye.
What are some of the symptoms?
diagnosis. It may also be a recurrence
(return) of breast cancer following initial
treatment. (Recurrence will be discussed
in more detail later in this section.)
Diagnosis of metastatic breast cancer
is generally done using some combination
of the following tests: bone scan, chest
X-ray, CT scan, MRI scan or PET scan. Some
symptoms of metastatic breast cancer may
- bone pain that
does not go away;
- shortness of breath,
chest pain, or cough;
- pain or discomfort
under the right side of the ribcage
- lack of appetite;
- neurological pain
or weakness and headaches;
These symptoms may be
possible signs of metastasis to the bone,
lung, liver, brain or other parts of the
body. However, this does not mean that
every woman who experiences them has metastatic
breast cancer. There can be a variety of
other reasons why you might experience
the above symptoms that may have nothing
to do with cancer of any kind. Short-lived
aches and pains and lumps often have
nothing to do with cancer, but can be a normal part
of aging. If something serious is happening,
it will most likely persist and get
worse. The important thing is that you
listen and pay attention to your body and
that you see your doctor to determine the
cause of the symptoms.
How is metastatic
breast cancer treated?
woman is different, and each situation
is unique, the treatment options may
vary. However, treatment of Stage IV
breast cancer generally involves systemic
(whole body) treatment such as chemotherapy.
Other treatment options are available.
They may include additional surgery,
radiation, hormonal therapy or use of
other drugs that may shrink the tumors
and provide symptom relief.
of treatment you receive to fight your
disease depends on your physical condition,
how the disease has progressed, options
available to you and your doctors,
and your own choice. You can decide what
is right for you.
What is inflammatory
breast cancer? Is it considered advanced
breast cancer has the appearance of inflamed
breasts (red and warm), and the skin
of the breast looks thick and pitted.
It is sometimes difficult to distinguish
from benign (non-cancerous) conditions
such as mastitis (a breast infection).
For this reason, misdiagnosis or delayed
diagnosis may occur.
cancer is a rare form of breast cancer
and accounts for only one to three
percent of all breast cancer cases. However,
it is an aggressive breast cancer and
may spread quickly to other parts of
Inflammatory breast cancer is classified
as Stage III breast cancer (meaning
it has spread to nearby lymph nodes).
If it has spread to distant organs
or lymph nodes that are not near the
breast, it would be classified as Stage
IV. Inflammatory breast cancer usually
requires aggressive treatment.
are the chances of surviving metastatic
have lived many years with metastatic
breast cancer, with a small percentage
of them in complete remission (no symptoms).
Thanks to increased treatment options
available, women can live for an extended
period of time with advanced disease.
Metastatic breast cancer can respond
well to treatment. It can often be dealt
with as a chronic and highly treatable
illness for many years.
In the 1990s,
there were significant advances in
the treatment of metastatic breast cancer.
New drugs such as Taxol, Taxotere,
Herceptin and aromatase inhibitors were
developed. Many of these therapies were
first introduced in clinical trials for
women with metastatic breast cancer. Currently,
there are new hormonal therapies, new chemotherapy
drugs, new vaccines and other treatments
Women with metastatic
breast cancer may want to consider entering
a clinical trial for one of the promising
new drugs. Sometimes the treatments are
more effective than the standard of
care, and sometimes they are not. Regardless,
women in clinical trials usually receive
state-of-the-art care and are helping
to identify new and better treatments
for women with breast cancer in the
future. (For more information, see
treatments are being developed all the
time, and a cure gets closer every day.
The longer you stay alive, the better
your chances of living a long time, even
with metastatic breast cancer.What can
a woman do to help herself?
It is important
for every woman—whether
she has been diagnosed
with advanced breast cancer or not—to
be proactive with regard to
her health and healthcare.
To this end, you
and maintain healthy lifestyle habits,
including good nutrition and exercise;
very familiar with your own body and
be aware of what is “normal” for
your instincts and seek medical attention
when unusual changes occur;
- Be persistent in
communicating your concerns
to your doctors and do not give up until you are satisfied that your concerns
- Remember that you
have the right to choose—your
as your treatment.
you are not happy
with your treatment,
you can go somewhere
else. Different medical
centers offer different
Ask your doctors, and do
some research. There may
be a new treatment or clinical
trial offered at a different
hospital, even one out of state, that
will work better for you.
RECURRENCE . . . WHEN
CANCER COMES BACK
There are times when
breast cancer returns
(or recurs) after you
have completed treatment
for your initial diagnosis
of breast cancer. A recurrence
can happen within a relatively short
period of time after treatment or many
years later. The diagnosis of cancer
returning can sometimes be more difficult
to accept and handle than the initial
Although you may experience
many, if not all, of the
same emotions you had when you were first
diagnosed, the intensity of these feelings
and fears may be greater. You may
be forced to face difficult
choices and think about serious consequences
based on your diagnosis
and the choices you make.
Again, every woman is
unique. How you and your family and friends
choose to handle the news of a recurrence
(and the options available
to you) may not be the same as how anyone
else handles the news. It may not even be
the same as how you handled
your initial diagnosis of breast cancer.
of recurrence is common and normal among
breast cancer survivors. However, when
this fear becomes overwhelming and interferes
with your normal daily life, consider
talking about your feelings with a counselor
or therapist or joining a support group.
types of recurrences can happen?
are three types of breast cancer recurrence — local,
and distant. Recurrences
usually develop from cancer cells that
were there all along, but grew very slowly.
Diagnosis of cancer returning
does not necessarily mean that the breast
cancer is advanced or metastatic.
It may be able
to be treated successfully.
A local recurrence
happens when the breast cancer tumor
cells grow back in the original
site (or breast). If a lumpectomy
was performed, the breast cancer
cells may have grown back in
the same area. If a mastectomy
was performed, this may mean
that the cancer cells grew
back in cells close to the
chest wall, skin or nearby
A regional recurrence
happens when the breast
cancer has spread outside the breast and
underarm (axillary) lymph nodes. This could
include areas such as in
the chest (pectoral) muscles, lymph nodes under
the breastbone and between
the ribs (internal mammary), in the lymph
nodes above the collarbone (supraclavicular)
or in the lymph nodes
surrounding the neck.
distant recurrence (or metastasis) happens
when the breast cancer spreads through
the lymph system or bloodstream to other
sites in the body—such
in the bone, lungs, liver, brain or
other areas. This is the most
serious type of recurrence.
occurs in a separate part
of the same breast
that had cancer, or
that occurs in the
other breast, is usually
a new cancer and not
after a recurrence
Once a recurrence is
found, your doctor will order
some of the same tests that are ordered when
a metastasis is suspected. These tests
would include bone
scan, chest X-ray, CT scan or MRI scan.
These tests are performed to find out the
extent to which your breast cancer
Treatment options for
a recurrence depends on a
number of factors, including
how you were originally treated for
breast cancer, the extent of the spread
of the breast cancer—whether
it is local, regional or distant—and
what options are available
at the time. If the cancer
comes back only in the
breast, it often can
be completely removed by
radiation, hormonal therapies
or additional surgery.
Whatever you decide to
do with regard to treatment
is between you, your family and your
doctors. If your breast cancer recurrence
is advanced (metastatic), you may want
to consider entering a clinical trial
for experimental drugs or other methods
Remember, advances in
being made every day, and what may not have been available to you at
time of your original diagnosis may now be a viable option for treatment.
Do Not Tell The Whole Story
If you talk to your doctor or do your
own research about metastatic breast
cancer, you will probably hear or read
different statistics that talk about
survival rates and mortality (death)
Reading or hearing information
like this can be discouraging and even
frightening. Remember that you are
not a number or statistic, and what
happens to you in the course of your
breast cancer journey is not dictated
There are many reasons
why the statistics you read are not
accurate predictors for you. For
one, the numbers are based on older
treatments that may not have worked
While your medical providers
may give you some statistical information
regarding your particular type
of breast cancer and survival, no one
can determine with absolute certainty
how you will respond to treatment.
Don’t give up, and don’t
let a statistic you find in the
course of doing research or talking
to your doctors rob you of hope.
to Cope With Metastatic Breast Cancer or
When you are told
that you have metastatic breast cancer
or that your breast cancer has come back,
you may experience many different feelings
or emotions. Some of these may include
shock, fear, sadness, anger, depression,
confusion, frustration, disbelief, disappointment
and a sense of losing control over your
You may develop an acute
sense of how quickly and drastically life
can change. You may have thoughts about
facing death, what you will miss in life
and how your family will handle all that
is about to happen. All of these feelings
and reactions are normal and understandable.
may feel as though choices have been
taken away and that from the time you are
diagnosed with a recurrence you are in
the hands of the medical community. This
is not so. While you do need to be attentive
to what your doctor says about your particular
situation and the medical treatment options
that are available, you still have one
very real and powerful area of control
within your grasp — you
get to choose your response to what
you are facing.
The following are some
ways to regain a sense of control and
to cope with a diagnosis of metastatic
breast cancer or a recurrence:
about your thoughts, feelings
and emotions to someone with whom you
feel comfortable. This can be your partner,
a family member, friend, support group,
professional counselor or therapist.
Letting your feelings out will help those
who care about you understand your needs
a little better and will help
you to understand what you need as well.
to figure out what gives you strength
to face the days ahead.
Some people find comfort and strength
in their spiritual life and find that
their faith is strengthened through adversity.
For some, prayer or meditation can give
them just the boost they need to get
through another day.
- Take charge of the
aspects of your health that you can
control, such as exercising and following
a healthy diet.
- Continue to participate
in as many of your regular activities
as possible, including work, playing sports, doing volunteer work
and visiting with friends
and family. Many people have a sense of peace when they
feel they are still able to live their lives as
normally as possible,
even when they are undergoing treatment. Remember, though,
to be wise about how much you do and to conserve
your strength for those
things you really want to do.
- Take steps to relieve
your pain and discomfort. One thing
you do not have to tolerate is physical pain. You have a right
to the best pain
control available. Talk to your doctor
or nurse about how to control your pain.
wait until your pain
is severe to ask
for assistance. You might
also consider relaxation
imagery or other
complementary therapies to help relieve
any pain you are
having. (See the Pain section)
joining a support group for women with
metastatic breast cancer. Talking with
other women in similar situations may
help you to realize that you are not
alone in your experience
and may provide you with a support network that fits your needs. See
Groups in North
in your area, or
try the online
listed in the Resources
at the end of this
- Let others
help you. We
all want to feel that
we can handle
everything that comes our
way. Asking for
help is often
very difficult to do.
help you also helps
friends and family feel
lost. When you let them
for you, it gives them some small comfort
that they were able to make your days
a little easier. (See also Family,
Partner and Caregiver
- Keep the lines of
communication open. You need to be
honest with yourself and with others about your emotions and your needs.
care about you want to know what they
can do to help you through the difficult
them know when you need company, when
you need to be alone, when you need for
them to listen to you, or even when you
just need a hug.
- Consider keeping a
journal about what is happening,
how you are feeling and what you want to do about it. Do not feel guilty
that you express. Sometimes, when you put your thoughts on paper and
look at them later, it helps you to gain insight
you need to do to manage what is happening
are many other ways in which people find
comfort and strength in their journey
of living with breast cancer (whether
it is an initial diagnosis, metastatic
breast cancer or a recurrence). If you
or a loved one are facing the difficult
challenge, you will learn what is best for you. There is
no right or wrong way to
face a breast cancer experience. Do what
works for you and your family.
800.ACS.2345 or 866.228.4327 (TTY)
Provides information and services for all
forms of cancer; diagnosis, treatment
and many other topics. Has information
on advanced breast cancer and metastatic
Buddy Kemp Caring House (Charlotte, NC)
Provides a home-like environment for emotional
support away from the hospital setting. All
services are free and available to anyone.
Cornucopia House Cancer Support Center (Chapel
Offers education, companionship and support
to help people with cancer, their family
and friends. Offers support groups, including
Living with Metastatic/Advanced Cancer.
Living Beyond Breast Cancer
610.645.4567 or 888.753.5222(LBBC)
Addresses post-treatment needs of women with
breast cancer through educational programs,
newsletter and toll-free Survivor’s
Helpline above available Tuesdays 11:00 am
- 3:00 pm. Hosts online message board, “Our
Corner: A Forum for Women Living With Metastatic
Cancer Information Service
800.4.CANCER or 800.332.8615 (TTY)
One of the best resources available for cancer
patients, this government organization provides
the toll-free hotline above in English and
Spanish to answer questions of any type of
cancer. Has free booklets about advanced
cancer and recurrence.
Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141
Spanish Hotline: 800.986.9505
Offers breast cancer education, support and
a 24-hour toll-free hotline. Has frequently-asked
questions about recurrence, and “I
Still Buy Green Bananas: Living with Hope,
Living with Breast Cancer” online.
Books and More
Breast Cancer: A Guide to Living With Metastatic
Disease, 2nd ed., by Musa Mayer and Linda
Lamb, Editor (1998). Helps women lead their
lives while coping with advanced disease.
Discusses treatment options, side effects
and pain, support and emotional issues.
Battle Plan: Six Strategies for Beating
Cancer, from a Recovered ‘Hopeless
Case’, by Anne E. Frahm with David
J. Frahm (1998). Written by a survivor of
metastatic breast cancer. Helps patients
learn more about advanced cancer, treatment
choices and more.
in Two Voices, by Sandra Butler and Barbara
Rosenblum (1996). An account of the authors’ identity
as Jewish lesbian women and how they live
with advanced breast cancer, from diary
Muscle: A Chicken’s Guide
to Living With Breast Cancer, by Monique
Doyle Spencer (2005). Uplifting, humorous
account of author’s battle with advanced
Buy Green Bananas: Living With Hope, Living
With Breast Cancer, by Michelle Melin (1997). Shares advice and personal stories
on coping with advanced breast cancer and
living life fully. Call 800.221.2141 or see
Miracles Happen, by Gregory White Smith
with Steve W. Naifeh (1997). Smith,
a long-time cancer survivor, writes a detailed
primer on how to keep searching for the right
doctor and right treatment to stay alive
many years after a terminal diagnosis.
Devil: To Hell With Cancer—And
Back, by Katherine Russell Rich (1999). A
young woman’s personal account with
insights about her relationships and the
details of her disease’s progression
to Stage IV status.
the Crab: A Memoir of Dying, by Christina
Middlebrook (1998). A memoir by Middlebrook,
a breast cancer patient, illustrating what
goes on inside the mind of a person with
terminal metastatic breast cancer.
to Live Out Loud: An Inspiring Family Journey
Through Illness, Loss and Grief, by Myra
MacPherson (1999). Gives advice for dealing with grief,
drawing on the author’s
personal experience with the family and friends
of a dying woman.
That’s So Funny
I Forgot to Laugh, by Lauren Brower (2004).
Written by a three-time breast cancer survivor
living with metastases, the book shares
the experience and emotional impact of
metastases, and the struggle to rediscover
laughter and joy.
Cancer Comes Back: Skills for Living, (video) by metastatic breast cancer
survivors, Liz Nichols and Jeanne Blake.
Five women tell how they meet the challenges
of advanced breast cancer. Call 978.282.9970
or see www.abouthealth.com.
Breast Cancer Center
Resource center created especially for
those with metastatic breast cancer.
Site includes information and resources for
advanced breast cancer and recurrence. Also
has transcript from “Ask the Expert
Conference on Metastatic Disease-Treatment
and Quality of Life Issues.”
CLUB-METS Discussion List
Click on Mailing Lists, then enter club-mets-bc
in the Search box. A public online support
group for people with metastatic cancer.
Community Breast Health Project
Has a useful metastatic breast cancer section,
including personal stories; click on “Support
and Practical Information” on the left.
Home Care Guide for Advanced Cancer,
from the American College of Physicians
Information for family, friends and hospice
workers caring for persons with advanced
cancer at home when quality of life is the
IBC Research Foundation
IBC Research Foundation specifically targets
inflam-matory breast cancer and the research
data to find a cure.
Includes information about inflammatory breast
cancer, patient stories, resources and links.
MAMM: Women, Cancer and Community
Has a link to Mamm magazine’s live
audiocast on Living with Advanced Breast
The Metastatic Breast Cancer Web Site
A source for information about metastatic
cancer created by members of bcmets, an online
support community. Offers information, a
listserv, resources and more.
Cancer Stage IV
Founded by a Stage IV breast cancer survivor.
Includes information on Stage IV (metastatic)
breast cancer, survivor stories, web links,