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© Nancy Davis Ph.D. (2009)
Although
breast cancer is the most frequently diagnosed cancer in U.S. women,
with over 212,000 invasive cases expected each year, it is only the
second leading cause of cancer deaths. Lung cancer claims the lives of
over 70,000 women each year; while 39,800 deaths are projected annually
from breast cancer. Heart disease, not cancer, is the leading cause of
death in U.S. women, causing between 350,000 – 500,000 deaths a year.
Despite this rather substantial disparity between the number of deaths
from heart disease and breast cancer, it is reported that
“significantly more women fear breast cancer over heart disease”
(Morales, 2003)
Some professionals who work with heart disease patients have asserted
that this fear is misguided, and it simply based on a lack of
information. It is, however, more likely not a lack of information,
but information related to these women from their relatives or friends
who have lived with breast cancer and its treatment which makes them
more fearful of this disease.
Mortality:
When a suspicious spot in her breast becomes the basis for additional
tests to determine if she has breast cancer, a woman’s sense of her own
mortality begins to emerge. If the tests reveal malignant cells, her
life view is even further altered. Although most people recognize and
accept, at least on an intellectual level, that death is part of the
natural cycle of life, when one is advised they have a potentially
fatal disease, it suddenly becomes a jarring reality.
Decision making:
She begins to face the first of many life-altering choices, beginning
with the decisions about which doctors will treat her. Breast cancer
treatment typically involves a number of physicians: a primary care
doctor, possibly a gynecologist, surgeons, radiologists and
chemotherapy specialists (hematologists). These doctors often have
offices in different locations. Multiple and time consuming
appointments often become a regular part of her life.
Some
women respond to a diagnosis of breast cancer by searching for as much
information as possible. In doing this, she may become very educated
as to the treatments with the most favorable outcomes and other
valuable information about the treatments. However, she also is likely
to learn of the sometimes frightening side effects of these treatments,
as well what are often rather cold and clinical prognosis for woman
diagnosed with each type and stage of breast cancer. Other women may
respond by refusing to research anything, leaving the choice of doctors
and treatments to relatives, trusted friends or largely to their
physicians.
Her doctors may ask her to choose
among a number of treatments depending on the type of breast cancer she
has and the stage of the cancer. For example, she may be asked to
choose between having a complete mastectomy or removing the cancer
cells and tissue around the suspicious or cancerous area. If she
chooses a mastectomy, she will be asked to decide if her breast should
be rebuilt, with the alternative being a flat, scarred area on her
chest. She may even have to decide if she wants to have both of her
breasts removed to reduce the possibility that cancer will appear at a
later time in the breast which is cancer free. She is often given the
option of chemotherapy, radiation, surgery or a combination of these
treatments. If she chooses chemotherapy, her doctors may review a
number of chemotherapy protocols and ask that she decide which of these
she wants. “My doctor gave me four different chemotherapy protocols
and told me to choose. I had only a very short time period to decide.
Even when I reviewed the available information on each treatment, I was
aware that those that were the most potent had the greatest side
effects and that the choice I made might determine if I lived or died.”
She
is also aware that she may be choosing treatments which will leave her
exhausted and alter her immune functioning, thus making her venerable
to pathogens (bacteria, viruses and fungus). Some treatments may cause
her to lose her hair and can lead her to feel as if she has been
poisoned. She may find herself suddenly moving from a life of low or
medium level of stress to one in which the decisions she is forced to
make can be life altering and even lethal.
Emotions/feelings:
beginning with the identification of a suspicious spot on a mammogram
or a sonogram, her view of mortality may begin to change. Fear can
become a constant companion…fear of pain, of the changes that a
diagnosis of cancer will cause in her life, and fear of the final
diagnosis. If the diagnosis of breast cancer follows, she begins to
experience a multitude of emotions, as well as having to deal with the
reactions of her family members, friends and business associates. She
may realize she has little memory of anything her doctor said in the
minutes after she was informed she had breast cancer. After the initial
shock begins to fade away, intense emotions may arise: fear of death,
of pain, of disfigurement, of changes in her social and professional
relationships. She may experience an intense anger or sense of
injustice, asking, “Why me and not her?” or “I am a good person, I take
care of myself, I go to church, I thought God would protect me.” Some
women experience guilt, convincing themselves that cancer is a
punishment for some action or failure to take action in some area of
their lives. Grief, caused by the loss of things that in part define
who she is, can surface throughout treatment, mingled with sadness and
depression. Following her diagnosis she may have wait days or weeks as
additional diagnostic tests or treatments are scheduled. As she waits
for treatment to begin, she can’t help but wonder if the cancer is
continuing to grow and whether this delay could have a significant
impact on her recovery. She may have to give her doctor permission to
perform several alternative surgical procedures, depending on what is
discovered during surgery, with the knowledge that she may not discover
what she has lost until she wakes up in the recovery room.
Sense of Isolation:
She often experiences a sense of stepping into an altered reality which
can only be understood by women who have also lived with breast cancer
and its treatment. As she receives radiation or spends long hours and
multiple days undergoing chemotherapy, she may experience an intense
sense of isolation; even when supported by loved ones. The treatments
for her breast cancer ultimately must be experienced alone. Treatment
for heart disease often involves one day of surgery, a relatively short
hospital stay, although the recovery may be long and painful.. Breast
cancer treatments often take days and weeks before completion.
Chemotherapy may be scheduled several days a week for weeks and may
take four or five hours or more each day to complete. Radiation may
require that she go for treatment several days a week for two or three
months.
She may have experiences that are
demeaning. The medical personnel responsible for providing treatment
are most often caring individuals, but often see so many patients that
she may feel as if she is no longer a person to them. Breast cancer
involves an intimate and private part of the body. Her breast may be
exposed and viewed by individuals who are not doctors or nurses,
causing her to be humiliated or embarrassed. “The doctor told me to
take off everything above my waist. He came in to examine me for a
minute, then left the door open during the time he was gone. People
walking down the hall turned to look at me. I felt small and
embarrassed.”
She now views her world through
eyes which her diagnosis of breast cancer has altered. This altered
view may trigger intense feelings of fear and dread, as well as
memories of scenes related to her diagnosis and treatment which have
been painful. She may not be comfortable sharing this with anyone,
because she does not think they will understand or doesn’t want to
upset them.
If chemotherapy is part of the
treatment, it may leave her immune system so compromised that she could
contract a fatal infection if exposed to germs or illnesses that would
have had little impact before her treatment, “I was virtually isolated
for two months; when neighbors brought food, and my husband went to the
end of the driveway to get it.” If serious infections develop, she is
often hospitalized because her almost non-functioning immune system
cannot fight the illness,
Body Image/physical appearance:
The biopsy may be just the beginning of many disfiguring and painful
changes to her body. Both chemotherapy and radiation can leave her
feeling exhausted and unable to function normally. Radiation usually
requires that her body be tattooed with permanent marks that are used
to focus the rays of radiation; a mark which can be a constant reminder
of her treatment and diagnosis in the years that follow. Radiation can
also cause her skin to feel tender and sunburned and the color can be
permanently altered. Chemotherapy causes far more dramatic changes to
her body because the chemicals that are effective in attacking and
eliminating cancer cells also cause skin changes, blisters in the
mouth, dramatic changes in her blood and immune system as well as what
some patients have referred to as “chemo brain” ( i.e., problems with
memory and the processing of information). Unlike treatment for other
types of diseases, if she is receiving chemotherapy, she usually loses
her hair. Although men often become bald as a natural course of aging,
for a woman, the loss of her hair makes her diagnosis and treatment
obvious to those around her. She can wear a wig, but she may find this
makes her look quite different and it is uncomfortable. Her sense of
taste may change and food may become unappealing, although her doctors’
typically want her to maintain her weight. “I came home after the
first treatment and I felt like I had been poisoned. The side effects
seemed to increase with each treatment and it became harder and harder
to force myself to go.”
Chemotherapy usually
requires that a port be surgically implanted into her chest; a tube
which goes directly into the artery leading to her heart because the
chemotherapy is so toxic that it cannot be infused into arteries in the
arms or legs. This port must be cleaned with great care because it is
also a pathway that bacteria can take directly into her bloodstream.
Although removed when chemotherapy is over, the scar it leaves is a
trigger for memories of her treatment
Physical Functioning:
If she has not yet had children, a diagnosis of breast cancer may end
any possibility of her ever having them. When treatments of
chemotherapy, radiation and/or surgery are complete, those women
testing positive for hormone receptors are commonly given medications
which block estrogen in their bodies. These medications can cause her
to prematurely move into menopause.
Her
ability to sleep may be dramatically changed. She may want to sleep
all the time, from being weakened and exhausted by the treatments or be
unable to sleep as she did prior to her diagnosis and treatment. If she
normally exercised to keep herself physically fit prior to her
diagnosis, she may find that treatment leaves her too weak or sick to
continue to do this.
Self Image: Her self image may be dramatically impacted as she
looks in the mirror and sees herself without hair and realizes how much
her appearance prior to treatment depended on her hair. Her skin may
change; her breasts may be dramatically altered.
Sexuality:
Breasts are such a visible symbol of a woman’s sexuality, of being a
woman and attractive, of nurturing her child through breast feeding.
Even when if her husband or significant other tells her that she is
still sexually desirable, and sincerely means it, she may not feel
sexual and may believe he/she is lying to her to make her feel better.
Chemotherapy, and even radiation, can have a very negative impact on
her desire for sex and enjoyment of it. The medications which induce
menopause often diminish her desire for sex.
Social and Professional Relationships:
Following her diagnosis, she is faced with how she will tell others of
her diagnosis and treatment and to how to deal with their reactions.
Social relationships may be dramatically altered as she is abandoned by
“good time” friends or those who cannot deal with her pain and their
fear that they too will get breast cancer. She may receive unwelcome
and sometimes inappropriate if well-meaning advice on the treatments
she should choose and regarding the choices that she has already
made. She becomes aware that the men and women who are aware of her
diagnosis and treatment for breast cancer now greet her by starring at
her chest, a behavior of which they are probably unaware. She may find
herself answering questions that seem to suggest that she is somehow
responsible for contracting breast cancer. (“Did you smoke? Did you do
monthly breast examinations? If the lump was that big, I’m surprised
you didn’t find it yourself.)
Intimate and family relationships:
A diagnosis of breast cancer almost always causes the relationship with
a spouse or significant other to change. Her husband or significant
other may become more supportive and helpful, or her diagnosis may
further fracture a relationship that already had a few cracks, leaving
her feeling even more isolated and alone. If her husband or
significant other responds by “hovering” too much, she may feel
smothered. She may want to talk to him about her fears of dying and he
may refuse to do so, believing if they don’t talk about it, she will be
protected or not want to even wish to consider the reality that he
would lose her. Even if he does listen to her feelings about death and
her treatment, he probably will hesitate to disclose how he is
experiencing her treatment and his fears that she could die, wanting to
protect her. Her children, parents and siblings probably treat her in
a very different way, a response to which she must learn to adapt.
If
she is single, or a single mother, she finds herself even more
responsible for her treatment decisions. Finding others to help her,
such as babysitters, someone to drive her to treatments if she is too
sick to drive herself, or a person who will respond if she suddenly
becomes very ill and must be driven to the hospital adds to her stress
and can be time consuming.
Ability to work:
If she has been working a full-time job, her treatment often impacts
her ability to continue at this level. Her life is now filled with day
after day of doctor and hospital visits, recovering from procedures,
and the physical changes that these treatments have caused that can
interfere with her ability to work. Radiation is generally given daily
for about six weeks. An entire course of chemotherapy usually takes
about 3 to 6 months. Because chemotherapy often has a dramatic impact
on making her more susceptible to disease (because of the change in her
immune system) she may be isolated from physical contact with all but
family members to protect her. The change in her physical appearance
and her physical functioning may also my impact her ability or desire
to work.
Financial: The impact breast
cancer has on her ability to work may dramatically impact her
financially, depending on how much she can work, and if she has sick
leave Unless she has very good medical insurance, the expense of her
treatments may cause a substantial financial burden. If her husband or
significant other has to take time off from his job to accompany her to
treatments; her family may have further financial problems. If her
children are small, she may have to pay for childcare that was not
required previously. If she is single, the financial consequences may
be even more devastating.
Pain:
Beginning with the biopsy, she experiences pain. Although a breast is
“deadened” during a biopsy, one patient stated, “The pain was so
intense, it took my breath away. I had to ask the doctor to stop the
biopsy for a few minutes so I could catch my breath.” The more
extensive the surgery required to remove cancerous tissue, the greater
probability that pain will follow. The insertion of a port can also be
painful. Radiation and chemotherapy can be painful. If breast cancer
progresses, the pain from the disease itself can be intense. In
addition, if lump nodes are removed from her underarm during surgery
because cancer cells have spread, she may experience problems related
to this procedure such as edema.
Control:
Breast cancer can seriously alter the woman’s sense of control of her
life. About 25% have been found to have post traumatic stress syndrome
(PTSD) -- their sense of safety has been seriously challenged. She is
told that if she makes it through five years without a reoccurrence of
cancer, the cancer will probably not reoccur. Those with heart disease
seem to experience a sense of control over the progression of their
disease; they can take medications that reduce their cholesterol and
trig., exercise, eat differently and have surgeries that correct their
problem. Breast cancer patients often feel that they have no control
over the reappearance of their cancer; all she can do is wait and hope.
Altered
sense of the future: When her acute treatment stage has ended,
(Surgery, radiation and/or chemotherapy) a sense of dread or fear may
prevent her from continuing to have diagnostic tests recommended by her
doctors to determine if the cancer has reappeared or spread. “My
doctor’s office kept calling me and asking that I make an appointment;
I just couldn’t make myself do it. I didn’t’ want to know if the
cancer had returned. I couldn’t bear the thought of further treatments
and what cancer would do to by body.” If her cancer returns or if her
initial diagnosis is of a late stage cancer, she must face the
possibility of her own death. Her doctors, however, may have problems
being totally candid with her about her prognosis, perhaps because they
don’t want her to give up hope or because they want to be a healer and
death may make them feel they have failed...
After
receiving a diagnosis of late stage cancer and consulting with her
medical team, a woman may realize that subjecting herself to further
treatment will only incrementally prolong her life and will likely
cause her to be very sick in her last months and weeks. However,
refusing treatment may lead to conflict with those she cares about,
because her family may regard this as giving up. Some family and
friends can have great difficulty accepting that she is dying and may
pressure her to agree to treatments which offer no reasonable
likelihood of a cure while only incrementally prolonging her life and
can make the time that she has left much more difficult.
The
fact that significantly more women fear developing breast cancer, as
opposed to heart disease, is understandable, given the dramatic changes
its treatment often creates in virtually every area of their lives.
A light in the darkness:
Rather than passively accepting the status quo regarding the diagnosis
and treatment of breast cancer, breast cancer patients, former
patients, together with their loved ones and friends, have responded
with defiance and action. Working together, they have become a
powerful force promoting early diagnosis, information on treatment and
research regarding the causes and treatment of the disease. They have
raised millions and millions of dollars for treatment and research by
promoting the sales of signature pink ribbons, bracelets and T-shirts
as well as sponsoring races, walks and other events. The Susan G. Komen
Race for the Cure is probably the best-know event and organization, but
there are many others at the national and local level. Businesses and
other non-profit groups have joined their efforts to raise breast
cancer awareness and generate funds by donating a percentage of items
sales and creating a wide variety of “breast cancer pink” merchandise,
ranging from home appliances to entire clothing lines.
Their
demand for more effective treatments and eventually a cure is creating
real and measurable results. Although breast cancer is the most
diagnosed cancer for US women, the improvements in treatment have
decreased the death rate to less than 20% of those diagnosed,
continuing to drop more than two percent per year, a trend that began
in 1990.
Given the many challenges detailed
above relating to the diagnosis and treatment for breast cancer, it
would seem that the experience would be an entirely negative one.
Thankfully, this is not the case. Many women indicate that this
experience has given them inner strength and a number of positive and
life-altering experiences. One author put it this way: “Life
threatening illness may cause us to re-examine the very premises on
which we have based our lives, perhaps freeing ourselves to live more
fully for the first time.” (Remen, 1996).
By
facing this adversity, many women are discovering a strength and
determination they had not recognized they possessed. “You will never
truly know yourself or the strength of your relationships until both
have been tested by adversity. Such knowledge is a true gift, for it
is painfully won, and it has been worth more to me than any
qualification I have ever learned.” (J.K. Rowling; 2008)
Although
“good-time friends” may drift away, they are often replaced with other
friends and loved ones who are amazingly supportive and help them to
move through these challenging experiences. A cancer patient may
become aware for the first time of how many people value her and reach
out to her in this difficult time. She may find that her relationship
with her husband or significant other becomes much more intimate and
meaningful.
She may learn many new and
important things about life. She may find a new empathy and for the
pain, fear and uncertainty experienced by others. She may feel
comforted by the incredible caring of the physicians, nurses and other
medical personnel who specialize in the treatment of cancer patients
She
may become aware that there are many others who have encountered
problems and experiences in their treatment far more traumatic and
difficult than hers.
Her diagnosis often changes her view and relationship with her God.
While
we work together toward a future in which breast cancer is no longer a
live-threatening disease, it is important to provide our caring and
support to women who are living through the current reality of
diagnosis and treatment.
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Dr.
Rachel Remen describes a ritual she designed to change the feeling of
isolation and being alone of cancer patients as they go through
treatment. This ritual is a way for those who care about a patient to
support and give strength to them. Prior to surgery, chemotherapy or
radiation, Dr. Remen suggests that the family and friends who love and
care about the patient gather in her hospital or treatment room. As her
part of this ritual, the patient is asked to bring a stone just large
enough to fit in the palm of her hand. As her support group gathers
around her, each of them, in turn, holds this stone in his or her hand
as they tell a story of a time in their life when they faced a crisis.
These crisis’s have many forms, such as stories of survival, death or
critical injury of a family member or loved one, losses of
relationships, jobs or physical functioning. They many include
virtually any incident which the friend or family member discovered the
strength they needed to work through it. As they complete their story,
they describe the inner strength or personal quality that helped them
deal with and move through this difficult time. Then, speaking directly
to the one preparing for treatment or surgery or treatment, they
transfer this strength into the stone they hold in their hand by saying
things like: “I put perseverance in this stone for you” or “I put
laughter in this stone for you” or I put optimism in this stone for
you.” After each person in the group has presented their story, they
present this stone, which contains within it all of their collective
and individual strengths, to the patient. She then keeps it with her to
ward off any feeling of isolation and to provide strength as she
undergoes the surgery or other treatment. (Kitchen Table Wisdom; pages
151-153).
Note:
This
article and the CDs and .mp3 audio files on cancer are dedicated to my
close friends Cyndi, both Sharon’s, Diane, Roberta, Chuck, Jim, Butch
and a number of others. I have learned much from your battles with
cancer and have been greatly inspired by your courage, strength and
optimism.
Dr. Rachel Naomi Remen is one of the
earliest pioneers in the mind/body health field, and was one of the
first to develop a treatment approach to people with life-threatening
illnesses that included their mental health and emotional needs. Dr.
Remen has been counseling those with chronic and terminal illness for
more than 20 years and is a co-founder of Commonweal Cancer Help
Program and author of Kitchen Table Wisdom and My Grandfather’s
Blessings: Stories of Strength, Refuge and Belonging. Her wisdom has
been woven throughout the audio files for cancer as well as other audio
files created by Dr. Davis. Dr. Remen is a unique and special woman.
Information and statistics from:
The National Cancer Institute; www.cancer.gov
Mayo Clinic; http://www.mayoclinic.com/health
www.MyBreastCancerNetwork.com
American Cancer Society, 9/25/07; www.cancer.org/docroot/MED/content/MED
Tatiana Morales; ‘Women’s Top Cause of Death’ CBS news, 2/12/03
Reader’s Digest; 2009; www.rd.com/your-america-inspiring-peope-and-stories/5-winners-teach-us-how-to-learn-from-failure/article125947.html
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