After the Diagnosis?
You gain strength, courage
and confidence by every experience in which
you must stop and look fear in the face.
You must do the thing you think you cannot
If you have been diagnosed
with breast cancer, you are likely to be
experiencing many different emotions. You
may feel that you have to make immediate
and instant decisions regarding your treatment.
In most cases, you do not. It is important
that you are comfortable with the treatment
choices you make. Whatever personal approach
you use to help you cope, be sure that you
are not alone. Developing a support structure
right from the start can be vital. Once you
have gathered all the information you need,
it is ultimately up to you to decide which
path you will follow.
Although you have important
decisions to make after diagnosis, you
DO have time for the following:
ask questions, do some research and
get a second opinion (if you desire). You
do not need to get permission from your
doctor to obtain the second opinion.
collect your thoughts and become more
informed about and comfortable with your
- To talk with other women
who have been treated for breast cancer
and learn how they made their own decisions for
treatment and how they feel about it now. (If you are
not sure how to find someone,
try Women Building Bridges on page 197.
Over fifty North Carolina breast cancer
survivors have volunteered to talk about
their experiences and share their insight.)
GETTING A SECOND OPINION
While you may feel uncomfortable
or embarrassed to tell your doctor that you
would like to get a second opinion regarding
your diagnosis and the recommended treatment,
your doctor should not be offended or question
your right to a second opinion. Many doctors
welcome a second opinion.
involves taking your medical records to
another doctor who practices in the same
field of medicine, who will reevaluate your
diagnosis and provide his or her treatment
In most situations, you have
time to gather all the information you
need, including second opinions, in order
to be comfortable and confident in the treatment
decision you make. In some cases, your
insurance provider may require you to obtain
a second opinion.
to consider when you go for your appointment
with the second physician:
- Call a
few days before your appointment
to be sure that all your records have
arrived (or bring a copy of your records
with you to the appointment).
- Be prepared
for your visit with a list of questions
you would like to ask, and bring along
a notebook to write down the answers.
You may even want to use a tape
recorder and take notes later.
- Try to bring someone
else with you to the appointment. You
may need the emotional support, and having
a second pair of ears will be very helpful
in remembering the information you are
given. He or she may also ask questions
you have not considered.
For more information about
second opinions, see the Resources at the
end of this section.
About Your Diagnosis
Ask your doctor
if there is more than one name for
your diagnosis. For example, “breast
ductal carcinoma” and “infiltrating
ductal carcinoma” can all
mean the same thing.
Is this the
first time you have ever had
breast cancer? If so, here are
some important questions to ask
- Is my breast
cancer invasive or non-invasive?
stage is my breast cancer? (For
example, Stage 0, Stage 1, Stage
IIA, Stage IIB, etc.)
- How large is
- Has the cancer spread
to my lymph nodes?
If so, how many lymph nodes are
- Is my breast cancer
estrogen receptor-negative or
estrogen receptor-positive (ER- or
- Is my breast cancer
progesterone receptor-negative or
progesterone receptor-positive (PR-
- Is my breast cancer
HER2/neu-negative or HER2/neu-positive?
to these questions will help you understand some of your
disease characteristics. Be sure
to ask what each disease characteristic
means for you. You need this information
to make informed treatment choices.
Guide to Quality Breast Cancer Care
by the National Breast Cancer Coalition
Fund (toll-free 866.624.5307 or www.stopbreastcancer.org/nbccf).
If your doctor recommends
that you have breast surgery, your choices
may include lumpectomy, partial mastectomy
and modified radical mastectomy. Your doctor
may recommend a particular surgery for
you based, in part, on the size and location
of the tumor, the type of cancer and whether
or not the malignancy seems to have spread.
There are standard protocols for treatment
of breast cancer, but your treatment may
not be exactly the same as any other woman’s
Surgeries for breast cancer
removal of the lump and a surrounding rim
of normal tissue. Some of the underarm (axillary)
lymph nodes may be removed to see if the
cancer has spread. This is called axillary
node dissection. The lump and lymph nodes
are examined by a special doctor called
a pathologist, who then checks the
tissue for the number and kind of cancer
cells. The pathologist’s
report will help your doctors decide
if you need more surgery and will help
your healthcare providers determine
what other care you may need. Lumpectomy
is almost always followed by radiation therapy.
or segmental mastectomy (quadrantectomy) involves
removal of up to one fourth or more of
the breast, depending on findings. Underarm
lymph nodes may also be removed. Radiation
therapy is usually given following surgery.
More breast tissue is lost in this method
than with a lumpectomy.
or total mastectomy involves removal
of the entire breast.
radical mastectomy involves
removal of the entire breast and some of
the underarm lymph nodes.
lymph node biopsy is part of some breast cancer
surgeries. It is a relatively new procedure.
It may not be available in all areas.
This procedure identifies the first (sentinel)
lymph nodes that receive lymph fluid
and cells from a breast tumor. The
surgeon then removes these few nodes,
and the pathologist checks for cancer
This procedure helps determine
if the cancer has spread and if patients
can avoid axillary node dissection (removing
underarm lymph nodes). In axillary
lymph node dissection, many (10-30)
lymph nodes are removed, the incision
is bigger, recovery time is longer,
and there is a greater risk of lymphedema
(collection of lymph fluid in arm or
hand after lymph nodes have been removed
or damaged). For information about
lymphedema, see Coping
with Post-Treatment Issues.
a different procedure. It involves removing
the breast when there is no cancer present.
In some cases, a woman will decide
that she wants to have a prophylactic
mastectomy of one or both of her breasts.
Prophylactic mastectomy is an option
for women who have a very strong family
history of breast cancer. It is important
for a woman to speak with a genetic
counselor before making this kind of
decision. (For other women, it may
be desired in order to “balance” the
physical appearance of the
breasts, usually followed by reconstruction
of both breasts.)
It is important that
the woman, her surgeon and her oncologist
work together. In some instances,
a second opinion may be required
in order to be certain that the
decision to have prophylactic mastectomy
is physically and psychologically
of Breast Cancer
After breast cancer
has been diagnosed, tests are done
to find out if cancer has spread in
the breast or to other parts of the
body. This is called “staging.” The
stage of breast cancer usually determines
the type of treatment a doctor will
- Stage 0 (carcinoma
in situ): There are two types of breast
carcinoma in situ: ductal (DCIS)
and lobular (LCIS). Neither condition
is invasive, but they may increase
the chance of developing invasive
- Stage I: The tumor
is 2 centimeters (cm) or smaller
and has not spread outside the
- Stage IIA: The tumor is
2 cm or smaller and has spread
to underarm lymph nodes; or the
tumor is 2-5 cm and has not spread;
or there is no breast tumor,
but cancer is in the underarm lymph
- Stage IIB: The tumor is
2-5 cm and has spread to underarm
lymph nodes; or the tumor is larger than 5 cm but
has not spread.
- Stage IIIA: Tumor is any size (or there is
no tumor) and has spread to underarm
lymph nodes that are attached
to each other or to other structures.
IIIB: The cancer may be any size
and has spread to tissues near
the breast (skin or chest wall,
including ribs and muscles in
chest); and may have spread to
lymph nodes in the breast or underarm.
IIIC: The cancer has spread to
lymph nodes beneath the collarbone
and near the neck; and may have
spread to lymph nodes in the breast or underarm
and to tissues near
the breast. Stage IIIC breast cancer
is divided into operable and inoperable
- Stage IV: The cancer
has spread to other organs of
the body, most often the bones, lungs, liver or brain.
from Breast Cancer PDQ: Treatment from the National Cancer Institute, 800.4.CANCER
What are common side effects
of lumpectomy or partial mastectomy?
you might anticipate some swelling, tenderness
and hardness in the surgical site for some
time after the surgery. Pain from the incision
wound and discomfort also accompany lumpectomy.
While this usually subsides, there
can be some persistent twinges of discomfort
experienced for months after the initial
surgery. Patients also describe pulling
or stinging sensations at the incision
site as they begin to increase their
activity. A ridge of healing, remodeling
tissue forms along the incision. This
ridge can be felt by you and may remain
for many months after surgery.
are common side effects of mastectomy?
Physically, you might have seroma
(accumulation of clear fluid in the
wound), hematoma (accumulation of
blood in the wound) and wound infection.
There will also be a certain degree
of pain and limitation in arm and
shoulder movement. Your doctor or
nurse should provide you with medication
for pain relief and instructions
on how to do exercises that can help
you regain range of motion in your
arm and shoulder. You may get numbness
or discomfort under your arm. You
may need time to adjust to the initial
appearance of the incision and the
changes that occur as healing and
remodeling take place.
What are some
side effects of removal of the lymph
You may experience numbness of
the underarm and upper inner arm skin.
Another less common, but possible,
side effect is lymphedema (swelling
of the arm). It is important to know
how to prevent or reduce the effects
of lymphedema, as it is preventable
but not fully curable. (See Coping
with Post-Treatment Issues.) If you experience swelling, tightness
or pain in your arm, you should tell
your doctor or nurse immediately. This
can happen immediately after the removal
of underarm lymph nodes or years later.
Radiation therapy uses special X-ray beams
to kill local cancer cells that may remain
behind where the lump was removed from
the breast. It involves daily, brief, painless
treatments, usually for six to seven weeks.
Before you receive any treatments,
you will go through a dry run called a simulation.
You will have to lie still on your back.
Small, permanent marks (tattoos) will be
placed on your skin. These marks allow
the radiation technologists to aim the therapy
beam precisely. As you lie with your hand
above your head, a specialist will measure
your breast to determine the right amount
of therapy for you.
Some women find the
simulation and radiation therapy process
emotionally draining. You might try to
prepare for the session by practicing relaxation
or spiritual techniques such as prayer.
You might bring a music player to the session
to listen to music or an audiobook. You
may want to check with your doctor or the
radiology technologist first to see if these
will be allowed during the simulation.
the last five days of radiation, some women
will have a procedure called a boost. The
boost is an extra bit of radiation directly
aimed at the original tumor site. During
this time, a different kind of radiation
machine is used. The area of boost may
become a little red, similar to sunburn.
If you experience any pain or difficulty
during this procedure, let your radiation
oncology nurse or doctor know immediately.
you have side effects, they will most likely
be fatigue, skin changes, such as redness,
drying or peeling at the radiation site,
or a change in the color of your areola,
nipple or breast. Your radiation oncology
nurse can suggest ways for you to take
care of these symptoms. These expected side
effects of treatment will gradually disappear
over weeks to months after you finish the
course of radiation.
breast cancer is a systemic (whole body)
treatment. During chemotherapy one or more
anti-cancer drug(s) will be given through
a vein or by mouth in pill form. Most women
receive chemotherapy for breast
cancer as an outpatient in a clinic or hospital.
However, there are instances during
which you would receive chemotherapy
as an inpatient of a hospital.
goals for chemotherapy are to cure cancer,
prevent its spread, decrease the speed
at which cancer grows, kill cells that have
moved from the original tumor site to other
parts of your body, or to relieve
some of the symptoms caused by cancer.
Ask your doctor or nurse to explain
what you can expect from the chemotherapy
a 14-day cycle, you receive the drug(s)
on Day 1, then wait 13 days until the
next cycle of chemotherapy. You may need
support drugs for nausea or for your bone
marrow during this time.
- In a 21-day cycle,
you receive the drug(s) on Day 1, then
wait 20 days before the next chemotherapy treatment.
- In a 28-day cycle, you
usually receive the drug(s) on Day 1
and Day 8, and then get a 20-day break.
This process is repeated for three,
six or twelve months, depending
on your type of cancer and on the type
of chemotherapy your doctor recommends.
Chemotherapy attacks cells,
especially those that reproduce rapidly,
as cancer cells do. It also affects normal
cells that reproduce rapidly, such as cells
in the stomach lining or mouth.
drugs act on normal cells, you will probably
experience some side effects as these cells
are destroyed. The most common
side effects are loss of energy (fatigue),
hair loss, nausea and vomiting,
or mouth soreness. Your healthcare team
will work with you to minimize
any side effects that you have. (See
Side Effects of Treatment)
When you are first
diagnosed with breast cancer, and there
is no evidence the breast cancer has spread
outside the breast and lymph nodes, your
doctor may advise receiving adjuvant
chemotherapy. This can be thought
of as chemotherapy given as an “insurance
policy” to help
reduce the risk of
the breast cancer recurring
in other areas in the
body such as the liver,
lungs, bones or the
For a minority
of women, their breast
cancer has already
spread to other organs,
or it recurs. In those
cases, the patient
is offered chemotherapy
with a less definite endpoint
to her treatment, which may
last until the cancer cells
stop responding to a particular
High Dose Chemotherapy with
Stem Cell Transplantation
Women with high-risk breast
cancer are more likely to have
their breast cancer recur than
women with a more favorable
diagnosis. (High-risk breast
cancer is generally defined as having
cancer in four or more underarm lymph
nodes.) For the past several years,
researchers have been trying to find
out whether higher doses of chemotherapy
drugs can do a better job of preventing
or delaying the spread or return of
breast cancer in these patients.
However, high-dose chemotherapy
damages the bone marrow, which is then
no longer able to produce needed blood cells.
To combat this, patients receive
stem cell transplants to help repair
the damage. Stem cells are found in
the bloodstream and are collected from
the patient before the chemotherapy
is given. After the high-dose
chemotherapy, the stem cells are “transplanted” back
into the patient and
are able to become fully mature red blood cells.
there is no convincing scientific evidence that high-dose
chemotherapy with stem cell transplant
is better than standard therapy
for breast cancer. It also costs
much more than standard therapy
and is more difficult and dangerous
for the patient.
Currently, this therapy is
offered only as part of a clinical
trial. However, high-dose chemotherapy with
stem cell transplant may still prove to
be a viable option for some patients
and continues to be tested in ongoing
clinical trials. To learn more
about clinical trials, see the Clinical
Although your doctor may give you
a timetable for when your treatment
will begin and when it will end, remember
that keeping to the schedule depends
primarily on how your body responds
to the treatments. Infection or other
factors may lengthen the duration of
your chemotherapy or radiation treatments.
It is better to be prepared for “unexpected” (and
unwanted) delays and rejoice in their
absence than to set yourself up for
disappointment when changes occur in
your treatment schedule.
Whether your doctor suggests
hormone therapy depends on the results
of a hormone-receptor test of your
tumor. Hormone-receptor tests determine
whether or not your tumor is hormone
or not (“estrogen-receptor
or hormonal suppressants
are given either
alone or with other
to inhibit the
growth of breast
cancers that are
They do this by
affecting the amount
of estrogen in
the body. In a
breast cancer that
estrogen can stimulate
drug used is tamoxifen.
Tamoxifen is one
of a class of drugs
called SERMs (selective
modulators). SERMs chemically
resemble estrogen and work by “tricking” cells
into accepting them instead
of estrogen. Unlike estrogen, they do not stimulate
breast cancer cell growth.
class of drug used in hormone therapy is the aromatase
inhibitor, a drug for post-menopausal
women. After menopause, the ovaries
no longer produce estrogen. However, estrogen
is still created by the
conversion of androgen (another naturally-occurring
hormone in the body)
Aromatase inhibitors keep
this conversion from happening. Therefore,
there is less estrogen in the bloodstream
to reach estrogen receptors in tumor cells
and stimulate tumor growth.
Aromatase inhibitors include the drugs
Arimidex, Femara and Aromasin.
Another way to control breast
cancer tumors hormonally, in
pre-menopausal women, is ovarian
ablation (stopping the function
of the ovaries). Radiation may
also be used for this. Pre-menopausal
women may receive drugs such as Lupron
or Zoladex to chemically suppress ovarian
function. Or they may undergo surgery
to remove the ovaries and induce menopause.
Ovarian ablation reduces the amount
of estrogen available to reach estrogen
receptors in tumor cells and stimulate
Immune therapies include drugs meant
to boost your immune system.
These are given to allow the chemotherapy
treatment to continue in
a timely fashion so that it does not have
to be delayed by slow recovery of blood counts.
group of immunotherapy drugs is the growth
factor drug. These include filgrastim
(G-CSF) and a similar drug pegfilgrastim,
which help treat and prevent infection after
chemotherapy by stimulating your bone
marrow to make infection-fighting white blood
cells. Another type of growth
factor is called Procrit or Aranesp. These
drugs prevent and treat anemia
(low red blood cells) from chemotherapy.
You may have heard about a new,
promising treatment called Herceptin.
It is a form of treatment that
works on the tumor protein HER-2/neu.
Herceptin is effective in fighting
metastatic breast cancers that
have too much HER-2 protein. It
limits the cancer cell’s
to continue to grow and divide. This
is usually combined with chemotherapy
or hormone therapy, but can be used
alone or as a maintenance drug.
your doctor if you have questions
about any of these
are designed to restore “normal” appearance
after mastectomy. Some women choose to
undergo breast reconstruction, and others
decide that reconstruction is not for them.
your treatment choice includes mastectomy,
you may want to find out about your options
for breast reconstruction. If you know
you will definitely have a mastectomy and
would want to have reconstruction, it is
important that you consult with a plastic
surgeon before your mastectomy. In some cases,
you can undergo reconstruction at the time
of the mastectomy. It is possible for you
to have reconstruction years after your surgery.
In other situations, this might not be advisable.
If you decide that you would
like to have breast reconstruction, you should
make sure that you talk with a plastic surgeon
who is Board-certified and a member of
the American Society of Plastic Surgeons.
See the Resources at the end of this
You may find it helpful to
talk with someone who has had the same type
of reconstruction you are considering. (See
Coverage For Reconstruction
In 1998, the U.S. Congress enacted the
Federal Breast Reconstruction Law, which
requires insurance coverage for reconstructive
surgery following mastectomies (North
Carolina’s law was enacted in 1997).
This includes coverage for:
of the breast on which the mastectomy
- surgery and reconstruction
of the other (non-diseased) breast
to produce a symmetrical appearance,
- prostheses, and
complications for all stages of
mastectomy, including lymphedema.
are my choices for reconstruction?
One option you may have involves insertion
of an implant filled with either silicone
gel or saline (saltwater solution).
Following mastectomy, your surgeon would
insert a tissue expander beneath your skin
and chest muscle. Over several weeks or
months, the expander is gradually filled
with saline through a tube in order to
stretch the skin enough to accept an implant
beneath the chest muscle. Once the
tissue has been expanded enough, you would
have another surgery to remove the tissue
expander and insert the permanent implant.
(Some patients do not require preliminary
tissue expansion. In these cases the
surgeon would insert the permanent
If you are considering reconstruction
with an implant, you should consult
with your surgeon, plastic surgeon
and oncologist to be sure that this
choice is available to you in your
Another common form
of reconstruction involves creating
a flap, including skin, fatty tissue
and muscle taken from other parts of
the body, such as the back or abdomen.
In one type of flap surgery,
the tissue remains attached to its original
site, retaining its blood supply. The flap,
consisting of skin, fat and muscle
with its blood supply, is tunneled
beneath the skin to the chest, creating
a pocket for an implant or, in some
cases, creating the breast mound itself
without the need for an implant. This
type of procedure is sometimes referred
to as a TRAM flap, if tissue from the
abdomen is used, or a latissimus dorsi
flap if tissue is used from the back.
flap technique involves using tissue that
is surgically removed from the abdomen,
thighs or buttocks, and then transplanted
to the chest by reconnecting the blood
vessels to new ones in that region. This
procedure requires the skills of a plastic
surgeon who is experienced in microvascular
surgery as well. These types of procedures
are referred to as free
TRAM flap (using
tissue from the abdomen, including muscle),
free DIEP flap (using
tissues from the abdomen, but no muscle),
SGAP flap (using
tissue from the buttocks). Because muscle
flap reconstruction involves the blood
vessels, women who smoke or have diabetes,
vascular or connective tissue diseases
may not be good candidates for this type
of breast reconstruction.
In either case,
flap reconstruction is more complex than
skin expansion, and recovery will take
longer than with an implant. As with
any surgical procedure, you should understand
the risks involved, be aware of the pros
and cons of each reconstructive surgery
option and discuss them fully with
your healthcare team before you make
Along with breast reconstruction,
you may also have nipple reconstruction.
Generally, this is accomplished by
using existing skin and fat on the
chest wall/breast reconstruction site.
The skin is molded to form the shape
of a nipple on the breast mound. Areola
reconstruction may also be done through
the use of a dark pigmented color (matching
that of the other areola) tattooed
around the nipple or a skin graft from
the groin. Unless the skin graft option
is used, this is not major surgery,
and both nipple and areola reconstruction
may be performed in your plastic surgeon’s
For more detailed information
about these procedures, and which
procedure may be best for your
particular situation, you should
see a Board-certified plastic
BREAST PROSTHESES (Breast Forms)
In the event that you do not
have breast reconstruction, you may consider
using an external breast prosthesis (breast
form). This is an artificial breast form
that you attach to your body or place in
your bra, lingerie or swimwear. There are
many companies (locally, regionally and nationally)
that either manufacture or carry a variety
of breast prostheses.
Most insurance companies
allow patients to choose where to purchase
a prosthesis. It is helpful for you to
see a specially trained fitter who has the
skills to help you choose and fit a prosthesis.
You should also check with your insurance
company about how much it will cover for
the prosthesis. Breast forms have a wide
range of prices, and some can be very expensive.
When you begin to look for
a breast form, you will quickly discover
that they come in a variety of shapes (i.e.,
heart-shaped, asymmetrical, triangular, tear-shaped,
oval and round). These variations are
designed to accommodate the different needs
and shapes of the women who will wear them.
Prostheses also come in different weights.
A professional fitter will be able to
help you choose the correct shape in order
to distribute weight evenly against the body
for anatomical fit and alignment. The
silicone breast forms are available in light,
medium and dark skin tones.
If you choose
to use a prosthesis, you will find that
there are surgical support bras available
in attractive, feminine styles to fit most
sizes. In addition, bras purchased in department
stores may be customized to accommodate your
prosthesis, as can other clothing, such as
bathing suits and lingerie.
The 1974 Medicare Ruling, Section
6109A of the Medicare Law, states that
a vendor must file for the partial
reimbursement for breast forms and
surgical bras. If you are eligible
for Medicare benefits, you are entitled
to reimbursement. A patient must pay
for the items first. Then, the vendor
will file with Medicare for reimbursement
to the patient. The patient will need
to have a prescription from a physician.
Hints When Shopping For a Prosthesis:
sure your doctor fills out a prescription
for your prosthesis (or wig) so
that costs may be covered by your insurance.
It is a good idea to check with your
insurance provider about coverage. Policies
vary on what is covered.
- Look for a prosthesis
when you have plenty of time to evaluate
which breast form suits your needs. Most
times it is best for you to make an appointment
with a certified fitter so that you can
get the personal attention you need to
fit your form.
- Bring someone with you
who will be supportive and honest about
how the breast form looks on you. You
may take a T-shirt or light sweater with
you to see how the breast form fits under
different types of clothing.
- Do not feel
that you have to make an instant decision
when choosing a breast prosthesis. You
will have it for some time, and it is
important that you are comfortable with
See Suppliers of Breast Cancer Products
and Services for stores
with certified fitters who can
help fit your prosthesis or find or adapt
clothing to your particular needs.
RECOVERY AND REHABILITATION
Some women devote so much time,
energy and courage to getting through surgery
that they neglect their recovery plan. A
proper recovery plan requires attention to
psychological and physical healing. If you
are able to regain control of your physical
recovery, it can positively affect the other
components in your recovery plan.
physical problems may arise after breast
cancer surgery. These problems will vary
depending upon the woman, the specific
type of surgery and the reconstruction efforts.
Following surgery, you will likely have
some pain or discomfort in the breast area,
and possibly numbness or tingling in the
arm. You may also have discomfort under your
arm where the lymph nodes were removed. This
may radiate down the arm, giving you the
sensation of “pins and needles” or
You should not lift anything
heavy or begin any exercises until your doctor
has given you permission to do so. You
will need to exercise the arm on the
side of your surgery to restore normal range
of motion and to learn how to prevent
or treat lymphedema. With the aid of a trained
physical therapist, you should be able
to recognize and treat these different
Studies have shown
that women who exercise after surgery tend
to have more energy and miss fewer days
of work. Exercise may also improve survival.
Women diagnosed with breast cancer who
exercised by walkng at least an hour a week
lowered their risk of dying from breast cancer
as compared with women who exercised less.
Women who walked three to five hours a week
lowered their risk even more.
problems would benefit from physical therapy
Some problems may include, but are
not limited to: lymphedema, pain, decreased
flexibility and strength of the arm
(or other areas), and tightness and
rigidity of the scar tissue. (For information
about lymphedema, see Coping
with Post-Treatment Issues.)
causes pain, and how can a physical
The incision site itself can cause
pain. Scar tissue can adhere to nerve
cells and cause a variety of sensations,
including pain. A physical therapist
can address the scar and the tight
tissue surrounding the incision through
manual techniques that can also be
taught to the patient.
Muscle “guarding” and
spasm is a normal response to any injury
including surgery. This guarding is not
only painful but can lead to a particularly
shoulder.” Specific exercises
can help stretch this tissue and
prevent further tightening of the
Should I wait until
all my treatments are completed before
seeking physical therapy?
Not necessarily. You should discuss
this option with your doctor first,
but physical therapy can be beneficial
both before and during certain treatments.
For example, during radiation therapy,
you must lie very still with your arm
extended overhead. This position can
be very uncomfortable if arm tightness
or arm pain persists after breast surgery.
Addressing the tightness and pain through
specific exercises can make radiation
treatments more comfortable for patients.
women choose reconstruction with a breast
implant. In this case, a tissue expander
is placed and is periodically filled
with saline to stretch the muscle and
skin and make room for the breast implant.
In some cases, the pectoralis muscle
will respond by involuntary contractions
or spasms. These spasms can be controlled
through both manual stretching and exercises
called isometric contractions.
I get referred to physical therapy?
Ask one of your doctors to refer
you to physical therapy. It is important
for your physical therapist to maintain
communication with your physicians
during your physical therapy treatments.
Also, insurance coverage for physical
therapy usually requires a doctor’s
Several hospitals in North
Carolina offer rehabilitation programs
for breast cancer patients. To find
out if your local hospital has a rehabilitation
program or offers lymphedema services,
ask your doctor or see North
Carolina Hospitals and Cancer Centers.
What should I expect at physical
At your initial evaluation with
the physical therapist, it is important
for him or her to know: the type
of surgical procedure that was performed
(simple mastectomy, modified radical
mastectomy, etc.), if any cosmetic
procedures were done at the time of surgery
(breast reconstruction, implants or expanders),
and if you are having any chemotherapy
or radiation therapy. The therapist will
also assess the range of motion of your
arms and neck, strength of your arms and
trunk, and evaluate your posture. Soft
tissue mobility of your scars and surrounding
tissue should also be assessed.
evaluating your strengths and weaknesses,
your therapist will design an individualized
treatment plan. The ultimate goal is
to become independent of physical therapy
with a complete home-exercise program
designed to address your specific needs.
if I can’t afford physical therapy
or my insurance doesn’t
Some organizations and hospitals
offer free and low-cost breast rehabilitation
programs. For example, the American
Cancer Society sponsors “Reach to Recovery,” which
provides support and information
to women facing breast cancer by trained volunteers
who are also breast cancer
Some YWCAs have a program called
ENCOREplus, which is designed especially
for emotional and physical support
following breast cancer surgery.
This program includes gentle exercises
performed in warm, shallow water
to improve flexibility and strengthen
affected muscles, gentle floor exercises
and relaxation techniques. Ask your
doctor or nurse if these programs
are available in your area, or call
your local YWCA.
There are other organizations
and hospitals in North Carolina that offer
rehabilitation programs for lumpectomy and mastectomy
patients. To see if your
local hospital offers lymphedema services,
Carolina Hospitals and Cancer Centers.
American Cancer Society (ACS)
800.ACS.2345 or 866.228.4327 (TTY)
Provides information and services for all
forms of cancer, diagnosis, treatment and
more. Programs include Reach to Recovery
(rehabilitation after surgery and support)
and Road to Recovery (transportation help).
Free booklets about breast cancer surgery,
chemotherapy and radiation.
American Society of Plastic Surgeons
Has information about breast reconstruction
and a free referral service to find a plastic
surgeon in your area.
Buddy Kemp Caring House (Charlotte, NC)
Provides a home-like environment for emotional
support away from the hospital setting in
Charlotte, NC. All services are free.
212.221.3300 or 800.813.HOPE (4673)
All services free. Provides emotional support,
information and practical help. Staffed by
trained oncology social workers. Support
groups, information, educational programs
and referrals for services.
Cancer Services, Inc. (Winston-Salem, NC)
336.760.9983 or 800.228.7421
A local, North Carolina non-profit organization
serving Forsyth, Davie, Stokes, and Yadkin
counties, offering patient services, support
and education. All services are free, including
cancer medication fund, wigs (as available),
Pink Broomstick rehabilitation after breast
surgery, and community education programs.
Cornucopia House Cancer Support Center (Chapel
Offers education, companionship and support
to help people cope with cancer. Services
are free and open to people with cancer,
their family and friends at any stage of
National Breast Cancer Coalition
202.296.7477 or 800.622.2838
A national advocacy organization that offers
the excellent, free Guide to Quality Breast
Cancer Care. Includes sections on Understanding
Your Diagnosis, Getting a Second Opinion,
and Getting Comprehensive Care.
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 for questions about any type of cancer.
Offers many free booklets about breast cancer
National Comprehensive Cancer Network
215.728.4788 or 888.909.6226
NCCN publishes breast cancer treatment guidelines
with the American Cancer Society. Call for
a copy or see the guidelines on their web
U.S. Food and Drug Administration
Breast Implant Information
Published a 2000 Breast Implant Information
Package, available on their web site or write
to request it. To report a breast implant
problem, or to receive an FDA MedWatch Package,
call 888.463.6332. Web site also has a list
of consumer groups for breast implant problems.
Y-ME National Breast Cancer Organization
312.986.8338 or 800.221.2141
Offers breast cancer education, support and
a National 24-hour, toll-free breast cancer
information hotline, including confidential
question and answer feature and referrals.
ENCOREplus programs provide peer support
and exercise for women under treatment or
recovering from breast cancer. Call the YWCA
in your county to see if it has these programs
A Breast Cancer Journey:
Your Personal Guidebook, by the American
Cancer Society (2001). Written for the
newly diagnosed and includes insights from
breast cancer survivors. Call American
Cancer Society at 800.ACS.2345 or see www.cancer.org.
A Woman’s Decision:
Breast Care, Treatment and Reconstruction,
3rd ed., by Karen Berger and John Bostwick,
III, MD (1998). A comprehensive resource
on breast cancer surgical options and reconstructive
surgery. Includes interviews with survivors.
Be a Survivor: Your Guide to Breast Cancer
Treatment, by Vladimir Lange, MD (2002).
Combines medical knowledge from experts in
the field with words of wisdom from survivors;
includes photos and graphics.
The Breast Cancer Handbook–Taking
Control After You’ve Found a Lump,
by Joan Swirsky and Barbara Balaban (1998).
Gives concrete advice and reassurance about
getting a diagnosis and second opinion, choosing
doctors, making treatment choices, coping
with side effects.
The Breast Cancer Survivor Manual: A Step
by Step Guide for the Woman with Newly Diagnosed
Breast Cancer, 2nd ed., by John Link, MD
(2000). Valuable guide for women newly diagnosed.
Discusses second opinions, understanding
pathology reports, how breast cancer is staged
and how that affects prognosis.
Breast Implants: Everything You Need to
Know, 2nd ed., by Nancy Bruning (2002). For
women considering breast implants, or for
those who have them. Includes details of
potential health risks, alternatives to implants,
advice on when and whether to remove them.
Diagnosis Cancer: Your Guide Through the
First Few Months, by Wendy Schlessel Harpham,
MD (1997). Written by an internist who is
also a cancer survivor. Has explanations
of different diagnostic tests, chemotherapy
drugs and abbreviations commonly used by
Essential Exercises for Breast Cancer Survivors:
How to Live Stronger and Feel Better, by
Amy Halverstadt and Andrea Leonard (2001).
Guidelines and illustrations for an exercise
program with pointers for identifying and
to Cancer Therapy: How Cancer is Diagnosed,
Treated, and Managed Day to Day (4th Edition),
by Malin Dollinger, MD, Ed., Ernest H.
Rosenbaum, MD, and Greg Cable (2002). Includes
information on diagnosis and treatment,
developments in molecular therapy and antiangiogenesis,
cancer biology and gene therapy, guidelines
for prevention and screening, second opinions
in cancer treatment and more.
The First Look, by Amelia Davis with foreword
by Nancy Snyderman, MD (2000). Photo collection
of mastectomy, lumpectomy, and breast reconstruction
with personal stories of women of various
ages and ethnic backgrounds.
Guide to Body Image and Cancer. This guide
gives women tips about clothing types and
styles to wear while undergoing treatment
and beyond. Available through Women Helping
Women in North Carolina (919.846.1203) or
call 800.799.690 or see www.shopwellwithyou.org.
Informed Decisions: The
Complete Book of Cancer Diagnosis, Treatment
and Recovery, by Gerald P. Murphy, Lois
B. Morris & Dianne
Lange (1997). A comprehensive and supportive
volume with information on cancer risks,
screening, diagnosis and treatment.
Making Informed Medical Decisions:
Where to Look and How to Use What You Find,
by Nancy Oster, Lucy Thomas and David Joseph,
MD (2000). Introduces the world of medical
information (in print, on the Internet, and
through contact with medical experts and
patients) and acts as a friendly referral
Managing the Side Effects of
Chemotherapy and Radiation Therapy, by Marylin
J. Dodd, RN, PhD (2001). Easy-to-read book
describing the possible side effects and
symptoms of chemotherapy agents and radiation
therapy, offering suggestions for each side
“One Move At a Time: Exercises for
Women Recovering from Breast Cancer,” (video,
1996). Simple, gentle exercise video to restore
range of motion and aid in recovering feeling
in the arm. Call The Cancer Club, 800.586.9062
or see www.cancerclub.com.
Reconstructing Aphrodite, by Terry Lorant
with foreword by Susan Love, MD (2001). Photographic
story of breast cancer survivors of various
ages and backgrounds who chose to have reconstruction.
Recovering From Breast Surgery: Exercises
to Strengthen Your Body and Relieve Pain,
by Diana Stumm, PT (1995). Stumm, a physical
therapist for breast cancer patients, describes
how to speed up the recovery process.
Show Me: A Photo Collection
of Breast Cancer Survivors’ Lumpectomies,
Mastectomies, Breast Reconstructions and
Thoughts on Body Image, by the Breast Cancer
Support Group at Penn State Geisinger Women’s
Health Center (2001). Photos and reflections
by breast cancer survivors on their surgeries
and reconstruction. Contact the Women’s
Health Center, 717.531.5867 or see www.susanlovemd.com/showme_frames.html.
“Woman to Woman–Breast Cancer
and Reconstruction Options”, by Bosom
Buddies, Inc. (video). Has information about
reconstruction, combined with real life experiences
and before-and-after photos of breast cancer
survivors. Call 877.245.1300 or see www.bosombuddies.org.
A series of videos with breast cancer survivors
explaining stages of breast cancer care
and treatment. Includes diagnosis, surgical
choices, treatment, family support, intimacy,
recurrence and metastasis, young women,
and life after breast cancer. Contact 800.775.5790
American Society of Clinical Oncology
A resource for oncologists as well as patients
living with cancer. Sponsors the “People
Living With Cancer” web site (www.peoplelivingwithcancer.org).
An online discussion and support group for
women dealing with breast cancer metastasis.
BRCA: Breast Cancer Discussion List
Breast-ONC: Current Advances in Breast Cancer
Treatment Discussion List
These public online support groups provide
information and community to their members.
Breast Cancer: Help Me Understand It!
Written by a physician who had breast cancer,
to clarify information about breast cancer
and to help women make choices about treatment.
This site has comprehensive information written
by oncology doctors and nurses about many
breast cancer issues, including understanding
your pathology report and your diagnosis
Cosmetic/Reconstructive Breast Surgery
Site has comprehensive information on breast
reconstruction, including images.
Offers information and support for women
regarding HER2 gene.
IBC Research Foundation
IBC Research Foundation specifically targets
inflammatory breast cancer and the research
to find a cure.
Includes information about inflammatory breast
cancer, patient stories, resources and links.
Myself: Together Again (M:TA)
Designed to be a visual guide for younger
women who want to see how their bodies will
transform before, during and after mastectomy
and reconstructive procedures. For a booklet,
contact email@example.com. (2006
Komen NC Triangle Affiliate Grantee)
Understanding Breast Reconstruction
Site has a comprehensive guide to breast