facing
cancer risk informed
and empowered
When
I speak to audiences about my breast cancer experience,
I tell them that I was a "tree-hugging,
granola-crunching, exercise-addicted, vegetarian
health-nut, who didn't drink or smoke" when I
was
diagnosed at age 33. I didn't have a strong family history of cancer. My doctors
implied that my cancer was a "fluke".
Yet
there were red flags in my medical records,
hints that might have alerted a health care team better
educated in cancer genetics that my cancer might be
hereditary. I learned about the existence of genetic
testing for
hereditary cancer not from my doctors, but from a magazine
article. I also discovered that I fit the criteria for
a possible hereditary cancer syndrome. I chose to pursue
genetic counseling and genetic testing and learned that
I carry a BRCA2 mutation which predisposed me to cancer.
Why does it matter if cancer is hereditary? For those
who have already had cancer, genetic testing can affect
treatment recommendations. It means there is a high risk
for further breast cancer and for ovarian cancer. It
also means that
blood relatives may carry the mutation. A positive genetic
test enables adult relatives who haven't had cancer to
determine if they inherited the same cancer predisposition.
The lifetime cancer risk that accompanies a hereditary
predisposition is much higher than the risk in the general
population.
Additionally, hereditary cancers tend to be younger onset,
when women are less likely to be screened and doctors
are less likely to take their symptoms seriously.
There is the mistaken impression that nothing can be
done if you have an increased risk for cancer, or that
the options available are too drastic to consider. In
reality there are several risk-management options, including
surveillance programs specifically designed for high-risk
women. These options sometimes involve making serious
and deeply personal decisions. These decisions need to
be based on solid information from experts specially
trained in cancer genetics, not on myth or misinformation.
Genetic testing and its aftermath came with a need to
connect with others who understood my situation. The
issues
were no worse than those I faced with my cancer diagnosis,
just different. I found the lack of support and credible
information isolating. To assure that no one else would
have to face these issues alone, I started FORCE: Facing
Our Risk of Cancer Empowered, (http://www.facingourrisk.org)
an organization devoted to families affected by hereditary
breast and
ovarian cancer.
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"The
news was no less than the feeling
of a truck hitting me in the stomach," says
Bree, who is now in her 50s and requested
that her full name not be used. "1
have no family history of breast
cancer and the only possible known
predisposition was my never having
had children."
Bree's fight against the disease involved a lumpectomy, six months
of chemotherapy, seven weeks of radiation and five years of tamoxifen,
an anti-estrogen drug, FDA-approved for risk reduction. Now breast-cancer
free, Bree says a positive attitude also played a critical role in
her survival.
" I never let any fear run rampant. 1 faced it all head on," she says.
Surviving
Cancer
Bree
is among more than 2 million breast
cancer survivors in the United States
today, according to the National Alliance
of Breast Cancer Organizations in New
York, NY. As scary as this disease
is - one out of nine women will develop
breast cancer in her lifetime and nearly
40,000 women are expected to die of
the disease in 2003 - experts say more
and more cases of early detection coupled
with new treatment options provide
much hope for battling this disease.
Today, only six percent of breast cancers are diagnosed at advanced
or metastatic stage (the spread of cancer from its original site) when
the five-year survival rate is 23 percent, according to the National
Alliance of Breast Cancer Organizations. Treatment options, meanwhile,
continue to grow in scope, experts say.
" There has been a tremendous increase in the variety of treatments of breast
cancer," says Dr. Elizabeth Ann Shaughnessy, a surgical oncologist specializing
in breast disease at the University of Cincinnati Department of Surgery. "It's
probably one of the most treatable cancers there is today. Our abilities to help
people live with their cancers are so good that you look at a cancer that is
stage four (terminal) and there are people living six to 10 years out from their
diagnosis. That certainly wasn't the norm 20 to 30 years ago."
This is encouraging news for women like Marcella Hinkel, 41, whose
cancer has spread from her breast to her liver and bones. Hinkel, who
received her breast-cancer diagnosis at age 35 after a self-exam revealed
a lump, thought she had beaten the disease after going through a lumpectomy,
chemotherapy and radiation. She also took the drug tamoxifen for five
years.
" 1 started having pain in my upper right abdomen for about a year before
I was diagnosed with the metastasis to my liver," says the Baltimore, Md.,
mother of a 7 -year-old son.
Risk
factors
This
year, 211,300 new cases of
female invasive breast cancer
- cancer that has spread to
nearby tissue, lymph nodes
under the arm, or other parts
of the body - and 55,700 cases
of noninvasive cancer will
be diagnosed, according to
the National Alliance of Breast
Cancer Organizations.
Some 77 percent of new breast-cancer cases each year occur
in women age 50 and older, with the average age of diagnosis
being 62 years old, says Elizabeth Woolfe, director of information
services for the National Alliance of Breast Cancer Organizations.
Breast cancer runs in Hinkel's family her sister, now in remission,
was diagnosed in 1999. If a family history is present, it's
the greatest influence on a woman with a breast cancer diagnosis,
Dr. Shaughnessy says. Still, the majority of breast cancer
cases occur in women who have no identifiable risk factors.
Hormone replacement therapy in post-menopausal women has shown
to increase a woman's risk for developing breast cancer, Dr.
Shaughnessy says. The age a woman is when she has her first
period as well as when she has babies also play roles.
" Women who get pregnant before age 30 whose age at menarche is 12 or after,
and women whose age at menopause is 50 to 52 or before, actually have a lower
risk," she says.
" Women never pregnant or pregnant after 35 have a higher risk. It's not
absolutely clear, but the hormones continuously cycling appear to playa role.
There's probably some other factors present that we don't fully understand."
Other risk factors, according to NABCO, include:
•Not having children or having a first child after age 30.
•Radiation therapy (RT) to the chest or upper body to treat Hodgkin's
•Disease, thyroid conditions or cancer.
•A history of previous breast biopsies and benign (not cancerous) breast
disease with certain findings.
•Being overweight or obese after menopause. Maintaining a healthy weight
and losing excess weight lowers a woman's risk of breast cancer compared to overweight
women. It's important to maintain a diet low in fat, exercise regularly and avoid
alcohol and smoking.
Fighting
Back
If detected
early, breast cancer can be
treated effectively with surgery
that preserves the breast,
followed by radiation therapy
This local therapy is often
accompanied by chemotherapy
and/or hormonal therapy Currently,
63 percent of breast cancers
are discovered at an early, "localized" stage,
and five-year survival after
treatment for early-stage breast
cancer is 97 percent, according
to NABCO.
In addition to medical treatment, which varies from woman to
woman depending upon the breast cancer stage and the route
she and her healthcare provider deem most appropriate for her
disease, positive attitudes make a huge difference, say those
personally touched by the disease.
During treatment, which left her feeling fatigued, Bree paced
her work. She also went into what she called "a fierce
survivor mode."
" All small situations became very unimportant. I concentrated on my wellness
- emotional, physical, spiritual," she says.
Despite having metastasis, Hinkel remains optimistic today: "Once
you are diagnosed with a cancer that has spread, you are automatically
considered Stage 4, which means terminal," she says. "But
I don't plan on going anywhere."
Support from loved ones, whether in the form of family and
friends or support groups if a woman is comfortable in these
settings, also is key, Dr. Shaughnessy says.
Adds Bree, "A diagnosis of breast cancer is not a death
sentence."
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About the Author: Heather Johnson Durocher is
a senior contributing writer for Women's Health & Fitness
and iParenting.com.
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