Cover story I wrote for the October 2005 issue of the
Scene, a monthly
publication in the local area. When the story was "promoted" to
the cover story, I was also given the opportunity to design the cover
art (above). Here is the text of the story:
The Past, Present and Future of Breast Cancer
Are we making progress?
By Valerie Nevitt Pfeiffer
While breast cancer death rates for women have remained relatively
flat, the number of newly diagnosed breast cancer cases has risen a
little over 1% every year since the 1940s. In 1960, a woman had a 1 in
20 chance of developing breast cancer in her lifetime; today her
chances have increased to 1 in 7. More than 500 Fox Valley women will
be diagnosed with breast cancer this year, and in 2004, I was one of
those women.
Receiving a diagnosis like breast cancer is never easy. Many women are
devastated by the news, but it surely isn't the death sentence that it
once was. Today, even women who have advanced stage breast cancer
manage it as a chronic disease, instead of one that requires them to
plan their own funerals. Since the day in late November 2004 when I
received my breast cancer news, I have taken a much different path than
the one taken by women with breast cancer a generation ago. Things
have changed for women with breast cancer: they know they can beat the
disease, they fight to find the best way to do that, and they are
advocates for other women who have or will be diagnosed with breast
cancer.
From the 1950s through the 70s and 80s, breast cancer wasn't often
discussed in public. Rather than talk openly with friends and
co-workers about their condition, most women with breast cancer were
careful to conceal it from everyone outside their close circle of
friends and family. When a woman was diagnosed with breast cancer, she
listened to her doctor, asked few questions, and didn't mention her
condition publicly after she walked out the door. And unlike today, a
woman diagnosed with breast cancer years ago didn't feel very hopeful
about her chances for survival.
In 2005, things are different. The death rate for women with breast
cancer is lower, and awareness of the disease is at an all-time high.
Pink ribbons are ubiquitous, including car bumpers, yogurt caps and
candy packages. Women with breast cancer are likely to talk about it
with whomever will listen. Popular media has also done its part to
bring breast cancer issuesinto the forefront. Who can forget the
episodes of "Sex in the City" after Samantha's breast cancer diagnosis,
when she donned a variety of wigs after losing her hair to chemo, or
when she tore off her wig in sweat and frustration while giving a
speech to a tuxedo-clad dinner crowd?
In the Family
One former Oshkosh family dealt with breast cancer through life and
death and several of the women later became strong advocates for breast
cancer awareness. In February 1978, Mary Kay Brown found a small lump
in her breast. She was 39, the mother of five children, and very
physically active. Her doctor wasn't concerned about the lump, but
just a few months later, the tumor had grown, and surgery took place
that June. By then, however, the damage was done. In the late 70s,
chemotherapy was crude, toxic to the rest of the body, and not as
effective as it is today. Brown endured three years of chemo and
radiation, and fought the disease until 1982 when her cancer spread to
her lungs and brain, causing her death. Unlike other women of her
generation, Mary Kay communicated openly about breast cancer with her
friends and family and chose stylish scarves and headpieces instead of
wigs.
Her four daughters were concerned about the hereditary nature of breast
cancer, but their concern was heightened in 1996 when Maggy, Mary Kay's
third child, was diagnosed with breast cancer at age 31. During her
surgery they found that her tumor was larger than expected and it was
located against her chest wall, making a successful surgical outcome
difficult. Maggy had chemo, then a bone marrow transplant, then
radiation. Three months later, her breast cancer had spread to her
brain, and four months later she was dead. Because of the rapid rate
at which researchers are developing new treatments, if Maggy's
diagnosis had come just a few years later, her treatment
recommendations and outcome may have been very different.
Julie Brown successfully battled breast cancer after her sister's
death, and Mary Kay's other daughters, Betsy and Becky, chose to have
their breasts removed before the disease could catch up with them.
Their only brother, Henry, has a daughter who will also live with an
increased risk of contracting breast cancer. In 2002, Betsy Brown, a
poet who now lives in Minneapolis, published a collection of poems
entitled "Year of Morphines," which was her way of expressing her
frustration with her family's experiences. Julie lives in Colorado and
is an outspoken advocate on breast cancer issues.
The Brown girls exemplify the biggest generational difference in breast
cancer patients today. Thirty years ago, women battled breast cancer
quietly, and today many women feel the need to do something other than
simply beat the disease. Christine Druther had a Stage IV breast
cancer recurrence ten years after her Stage I tumor was removed in 1990
(see Staging illustration). Rather than do nothing after beating
cancer in her brain and lungs, she and her husband started a website
dedicated to sharing information among women with her type of breast
cancer. Their website is highly respected by breast cancer industry
professionals, and has helped countless women around the world get
information they need to help fight their disease.
Risk Factors
Family history plays a significant role in a woman's breast cancer
risk, but only about ten percent of the women diagnosed have a family
history. Other factors that are believed to contribute to breast
cancer incidence include poor diet, smoking, exposure to radiation,
exposure to harmful chemicals in the environment or their food, alcohol
intake (even modest amounts), lack of exercise…the list goes on. Since
her recovery from breast cancer surgery and chemotherapy in 2003,
Brenda Nelson has completely changed her diet. She buys organic food
products and is strict about the types of products she puts on her
skin. While is little scientific research to quantify the exact foods
that decrease a woman's chances of developing breast cancer, one can't
argue with the logic of avoiding the chemicals and preservatives that
are found in most of our food supply. Some also point to the heavy
concentration of paper companies in the Fox Valley as a reason that we
are at risk for breast and other types of cancer.
The truth is that no one can pinpoint the exact cause of breast cancer
in any individual woman, and we aren't close to finding that cause.
Dr. Walter Carney of OncoGene Science in Cambridge, Massachusetts, was
interviewed via phone about his research into serum testing for
treatment of breast cancer. While discussing his research projects, he
also touched on his thoughts about the likelihood of discovering a
cause relatively soon. "The problem is that all women are genetically
different, and it's difficult to determine cause when multiple risk
factors are present," Carney said. "Determining cause is a long way
off."
It's apparent that breast cancer is an epidemic among women, and some
groups feel that research efforts fall woefully short in attempting to
determine the root cause. The concern is that plenty of resources are
expended on finding new ways to treat breast cancer once it's
diagnosed, but little effort is spent trying to understand why certain
women get breast cancer in the first place.
According to Breast Cancer Action, a national group whose goal is to
"inspire and compel the changes necessary to end the breast cancer
epidemic," research programs exist that were designed to liberate
science from the constraints of traditional research models so they
could be free to move more quickly to invent better treatments and find
ways to prevent breast cancer. But with more than $1 billion and 12
years invested in this research, this group thinks that we should be
much closer to finding a way to prevent the development of breast
cancer in the women of tomorrow.
Are we making enough progress in the fight to wipe out breast cancer
before the next generation of women is at risk? For the 800 women in
Wisconsin and the 40,000 women nationally who will die from breast
cancer this year, the answer is probably not. While progress may seem
to move at a snail's pace, especially for those currently living with
advanced stage cancers, there have been some impressive advances in
breast cancer research since 2000, the year that many secrets to the
genetic code were unlocked.
"Part of the problem with cancer treatment research is that bringing
new technology to the general population is a time-consuming process,"
said Carney. "Much is happening in the research community, but it
takes so long to get final approval. You have friends with cancer and
you know they can't wait around. It's frustrating."
Carney's work is just one of the ways that research will be benefiting
women struggling with breast cancer. The serum testing developed by
his firm offers early prediction of the success of certain cancer
treatments. Oncologists can use this test to determine if the chemo
drugs a patient is receiving are doing their job, and if the test shows
that they aren't, the chemo mix can be adjusted. For the patient, it
means a higher likelihood of a positive outcome.
Another study uses DNA analysis of a blood sample to determine if a
patient will have a recurrence of her primary breast cancer. Dr. David
Hoon, Director of Molecular Oncology at the John Wayne Cancer Institute
in California, also spoke via telephone about his work. "When a woman
'beats' her breast cancer, there isn't a way to be certain whether or
not it will return," said Hoon. "With this DNA model, a routine blood
test can detect recurrences at early stages of development. Early
diagnosis means greater chances of survival."
Research Bringing Results
Hundreds of studies and many clinical trials are in progress that hold
promise for women who have breast cancer or who are yet to be
diagnosed, including:
• Researchers at Rice University are studying the use of metal
nanoshells, spheres measuring just a few billionths of a meter in
diameter. The nanoshells are designed to seek out and destroy cancer
cells by reacting to a specific wavelength of light that's targeted at
them. When the nanoshells are let loose in the woman's body, they find
and attach themselves to cancer cells, and doctors to target a harmless
beam of light at the body, lighting up the location of breast cancer
cells. The nanoshells absorb the light, convert it to heat and destroy
the cancer cells.
• Lots of industry buzz in 2005 was about the new wonder drug,
Herceptin, and its miraculous effect on tumors that overexpress
Her2/neu. Up to one third of breast cancer cells over-express the
Her2/neu receptor protein, which continuously "tells" the cancer cell
to grow, producing an aggressive cancer that is difficult to stop.
• Individualized, targeted drug therapies are being customized to
the patient. Herceptin is one such drug; only women with a specific
celltype benefit from it. Other drugs are in development that will be
combined with Herceptin and other chemo drugs for specific people based
on the pathology of their cancer cells.
• Using immune cells from a sibling, researchers have been able to
shrink tumors in patients with Stage IV breast cancer. "The tumors
were not completely eliminated, but the responses we saw provide hope
that this is worth pursuing," says the study's lead author, Michael
Bishop, MD, of the National Cancer Institute's Center for Cancer
Research.
• Sentinel node biopsy and other less invasive surgery choices are
becoming much more common. Using sentinel node biopsy, the surgeon
looks for the lymph node or nodes that are the first stop for anything
draining from the tumor area and removes only that node and a few of
the adjacent nodes. In the past, if cancer cells were found in the
lymph nodes, a woman stood a good chance of losing many nodes, which
causes more surgical complications.
• It's possible that by the time today's young girls reach the age
when they're at risk for breast cancer, there will be a vaccine
available to prevent it. Researchers at the University of Texas M. D.
Anderson Cancer Center vaccinated mice that were genetically engineered
to develop breast cancer, and none of the mice that received the
experimental vaccine developed a tumor. Many other breast cancer
vaccine trials are currently underway in research facilities around the
country.
• Mammography is still the gold standard for early detection of
breast cancer, but it fails to detect some early tumors in
pre-menopausal women. Dr. Thomas Nelson, professor of Radiology at the
University of California in San Diego, is working on a CT alternative
to mammograms for women with breast cancer risk. CT allows an image
to be rotated and viewed from multiple angles so a small tumor has a
better chance of being noticed. Additionally, MRI is a technology that
is being evaluated for early detection of breast cancer.
Breast Cancer on the Local Front
My battle with breast cancer isn't unique. Like many of my
contemporaries, I have become educated about the disease, and in the
process, I have learned fascinating things about the quality of breast
cancer care in the Fox Valley. Wedon't havelarge academic hospitals
in our community, nor do we have big-time medical research facilities.
However, we are fortunate to have some extremely well-educated medical
providers who have sophisticated knowledge of the latest in breast
cancer treatment. If you live in the Fox Valley and are diagnosed with
breast cancer, you are more fortunate than women in many other parts of
the country.
Dr. Carney from OncoGene Science was surprised to hear that neoadjuvant
(meaning received before surgery) chemotherapy with Herceptin was being
used with patients in our area last December when I began using it.
Few providers around the country were using Herceptin for early stage
cancers at the time, and even fewer were using it in a neoadjuvant
setting. Yet doctors in our comparatively small market were offering
it. Ray Georgen MD, a surgeon with Surgical Associates of Neenah, and
Jack Swanson MD, an oncologist with Fox Valley Hematology and Oncology,
knew well the powers of Herceptin for tumors that overexpress Her2/neu,
so before it had become common practice, they started using it for
patients with Her2 tumors.
While providers here were using Herceptin with favorable results, women
around the country were fighting with their doctors and insurance
companies to get Herceptin. Locally, our insurance providers seem to
be more open-minded than others. Network Health Plan, an HMO
headquartered in Menasha, has stayed informed on the latest treatments,
and has approved Herceptin for the patients who need it.
Newly-approved drugs can be costly, but insurance companies like
Network understand that keeping patients healthy means lower costs in
the long run.
The delivery of industry-leading radiation oncology services is another
way that the Fox Valley leads other parts of the country. Editha
Krueger MD, a radiation oncologist at the ThedaCare Cancer Institute in
Appleton has conducted research with some of the national leaders in
breast radiation oncology, and offers planning approaches to breast
radiation therapy that isn't available in most cities. I worked with
Dr. Krueger for radiation therapy after spending a great deal of time
researching the latest approaches to breast radiation. A lengthy
report requesting to use Dr. Krueger, an out-of-plan provider, was
submitted to and approved by Network Health Plan at a time when they
did not have a similar provider. The information in the report also
led them to send other women with similar radiation needs to Dr.
Krueger. This is a commendable action for an HMO and it illustrates
the impact on others when one person speaks out about the need for
necessary services.
The delivery of radiation services locally will continue to improve
when the new partnership between Affinity Health System and the
University of Wisconsin Comprehensive Cancer Center in Madison
officially gets underway. Physicians with the Cancer Center will work
with Affinity physicians and local oncologists to offer new ways of
providing radiation oncology to Fox Valley cancer patients. We don't
have leading medical research facilities, but we have their services,
which is lucky for us.
Despite the fact that research seems slow and wrapped in red tape,
access to information is quicker and easier because of the Internet,
making it less complicated for a woman diagnosed with breast cancer to
find information related to her care (see website chart inset). Most
oncologists caution their patients about bad information found online,
however the Internet has become extremely useful for finding clinical
trials, second opinions, and general information about breast cancer.
The Internet has also been used to uncover abuses in the delivery of
breast cancer care. A breast cancer patient in Chicago posted a
question on
Her2support.org,
the site created by Joe and Christine Druther, about Herceptin prices.
It turned out she was paying much more than people elsewhere, and
according to Joe, her efforts caused the hospital to refund
overpayments to many patients and insurance companies.
Lyn, a resident of Australia who has battled breast cancer for years,
is vocal about her frustration with her government, who won't approve a
drug already approved in the U.S. until it conducts its own research
and approval process. In the meantime, women are dying. According to
Lyn, it wasn't until the Prime Minister's wife had breast cancer that
Herceptin became widely available in Australia. "Does our government
think that people in the rest of the world are aliens and that their
drugs may be harmful to us?" she said via online chat. "Don't they
realize we are the same humans as Americans, and that if the drugs work
for them, they should work for us?" Yes, one wouldcertainly think
so…
Access to talented local physicians doesn't lessen the importance of
personal involvement and self-education in the fight against breast
cancer –it helps breast cancer patients get better care, and can
directly or indirectly impact women diagnosed in the future. Dr. Walt
Carney said that in the next ten years it's likely we will learn to
manage breast cancer like we do blood pressure: we will manage it and
prevent it from becoming a future health problem. Let's hope he's
right, because then we can concentrate on finding a way to prevent it.
(c) 2005 Scene Publications--Reprinted with permission
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
SIDE BAR ONE:
Breast Cancer Online
Many oncologists advise patients to stay away from the Internet because
it contains too much bogus advice and too many “doom and gloom”
statistics. However, the Internet has become an important
informational tool for women with breast cancer. Some sites worth
visiting:
www.clinicaltrials.gov
Tracks current clinical trials. Helpful for women looking for a trial to join.
www.cancer.gov
Website for the National Cancer Institute, which was the source for statistics in the accompanying story.
www.cancer.org
Official site for the American Cancer Society
www.her2support.org
Website cited in the accompanying story. Offers a board where women
can post and reply to questions about Her2 breast cancer (30 to 50% of
breast cancer cases).
www.komen.org
Official site for the Susan G. Komen Foundation
www.y-me.org
Support services and educational resources forwomen witbreast cancer.
www.breastcancer.org
A non-profit organization for breast cancer organization; includes some useful discussion boards.
www.bcaction.org
Site for Breast Cancer Action, a breast cancer advocacy site.
(see next entry for SIDEBAR TWO)
(c) 2005 Scene Publications--Reprinted with permission
