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She'd felt it. She'd urged doctors to treat it. But it wasn't until she was told that that the 7-centimeter mass inside her left breast was cancerous that Janice Fine felt she was about to face something truly ominous. Hearing the word "cancer" sent her reeling. "Having lost my mother to cancer, and hearing that I had cancer, confirmed my deepest fears," she says today.
But Fine, 43, is now an official 10-year breast cancer survivor and the subject of a new documentary, One in Eight: Janice's Journey. The Bostonian has had no recurrence of the carcinoma for which she was treated with surgery, radiation, and chemotherapy in the early months of 1994. And she is more than a single success statistic.
The last decade has seen improvements in the prevention, diagnosis, and treatment of breast cancer -- and in the amount of money being spent on research. What's more, the breast cancer movement -- the grass-roots efforts by women to see that the disease commands the attention of policy-makers, drug companies, and physicians -- has burgeoned since Breast Cancer Awareness Month was born 20 years ago. The Internet has enabled women from far-flung locations to meet one another virtually and stay in touch, sharing critical information, advice, hope, and well wishes. At the same time, corporate America, from cosmetics chains like Sephora to Fortune 500 companies like 3M to smaller convenience store chains such as Wawa have contributed money, ideas, and products to help individual women and the breast cancer movement. Authors committed to breast cancer awareness have worked with publishers and TV stations to create huge events around the release of their books. And dozens of celebrities have gotten involved in projects as creative as breastcancer.org's Celebrity Talking Dictionary, which helps women learn to say and understand the complex medical terms they need to speak intelligently with their doctors.
"Twenty years ago people wouldn't even say the words 'breast cancer,'" says Nancy Brinker, founder of the Susan G. Komen Breast Cancer Foundation, a leading advocacy organization. "While there is still more work we can do, we have come a very long way in the fight to bring awareness and early detection to top of mind."
According to Marisa Weiss, MD, president and founder of breastcancer.org, a nonprofit organization of medical experts that distributes free, up-to-the-minute information on breast cancer diagnosis and treatment over the Internet, "Women today are busier than they've ever been before. No one has time to get breast cancer. So what women are doing today that they were not able to do in the same ways five years ago is arm themselves with medical information, connect, support each other, and lobby to conquer this disease." The Internet is making such connections possible, says Weiss, who is also a breast radiation oncologist practicing in the Philadelphia area.
Weiss says that the amount of information on breast cancer has doubled in the past 10 years and will double again in the next five, making rapid, fluid communication among women and their doctors more critical than ever. "Gone are the days of Saturday conventions for women to gather and talk about breast cancer," says Weiss. "Women want a 24-7 medical resource, and they want to be able to speak to each other, virtually, any time of day and night."
In the last few years, efforts to push for more research and to contribute to the cause have surfaced in myriad forms from around the world. Some examples:
And in recent years, individual women, from tiny towns and major metropolises, have gone public on Internet message boards, a practice almost unthinkable less than five years ago. For instance, with less than a week's notice, 22 cyberfriends of Florence Mink, 53, of North Wildwood, New Jersey, convened at the Jersey shore for a week this past June to support her through treatment for breast cancer that had just spread to her brain. "It was the most wonderful thing," says Mink, who is now undergoing one regimen of chemotherapy to attack the cancer in her brain and another because the cancer has metastasized to her bones. "These were women I'd never met in person, and the outpouring of friendship was truly overwhelming." Mink organized parties, gourmet dinners, casino trips, and dancing; her cyberfriends, all battling breast cancer, range in age from 19 to 67.
Other women have organized charity events to celebrate the lives of loved ones battling the disease. For the past eight years, the family of Debbie Osborne, 49, of Glen Mills, Pennsylvania, has hosted a charity bike ride for family, friends, and bikers far and wide. They have raised more than $50,000. "I can either plan my funeral or work to help plan events like this," says Osborne, a registered nurse whose sister-in-law, Nancy, started the event with 30 bikers; this October, more than 100 will participate. "It's a terrible disease, but I just try to put my scared and frightened thoughts in a dark corner and stay positive and hopeful, trying to help other women." Adds her sister, "It's a day of fun, fellowship, laughter, and family. The fundraising is secondary."
The advocacy movement also has spawned petitions in Congress. Last September, for instance, Lifetime Television delivered more than 5 million petition signatures to Capitol Hill, urging Congress to ban so-called "drive-through" mastectomies -- the practice in which women are forced out of the hospital sometimes only hours after breast cancer surgery.
Numerous organizations now distribute awards to survivors, researchers, physicians, and treatment facilities that are passionately committed to the cause of finding a cure for breast cancer.
Experts are chagrined that there still is no cure, or cures, for breast cancer -- still the leading killer of women between 35 and 50 years of age. But they see immense hope in the decade to come with the mapping of the human genome and the study of so-called protein profiles (proteomics) that may allow the development of new screening tools and targeted therapy that will move patients away from more radical procedures and toxic treatments.
"To some, the last 10 years may appear to have been sluggish," says Susan Braun, president and chief executive officer of Komen. "But what we've been doing is creating the base of science and information technology and public awareness that will be the springboard from which immense progress will come in the next 10 years."
Adds Dr. Carolyn Runowicz, 53, a breast cancer survivor, gynecological oncologist, member of the President's National Cancer Advisory Board, and Director of the Neag Comprehensive Cancer Center at the University of Connecticut, "We've made major progress in the past decade, but breast cancer is a major and unmistakable health problem in this country. We've made strides but we still see way too many women presenting with advanced stages of the disease. Too many people still are dying."
In fact, the number of deaths each year from breast cancer has declined about 10% since 1996 (from 44,300 to the current 40,110) according to data from the American Cancer Society. However, the number of cases diagnosed has risen -- from 184,300 in 1996 to an estimated 215,990 this year. This may be the result of better diagnostic techniques and early detection.
Growing most rapidly are the number of cases of ductal carcinoma in situ (DCIS), a form of breast cancer in which the tumor has not spread beyond its borders into lymph or other systems. And the number of DCIS cases is expected to grow rapidly as diagnostic techniques continue to improve.
Current data suggest that, based on living to the age of 85 to 90 years, the lifetime risk of developing breast cancer among American women is 1 in 7, up from 1 in 10 two decades ago. "That sounds discouraging," says Braun of the Komen Foundation. "But we think it will level off."
The good statistical news is that survival rates are improving. According to American Cancer Society data, 87 percent of women are still alive five years after diagnosis; 77 percent after 10 years; 63 percent after 15 years; and 52 percent after 20 years.
Research funding for breast cancer, meanwhile, has skyrocketed. Between the National Cancer Institute and the Department of Defense, the federal government this year will spend nearly $800 million on breast cancer, double the amount spent 10 years ago, according to federal statistics. Strides have been made in every phrase of the disease, doctors and patients agree, from prevention and education to diagnosis and treatment.
"The advocacy movement can take a great deal of the credit for the increase in funding," says Weiss. "Women care passionately about this disease, which robs them of life in the prime of their life. They want the cure and they want it now."
Being a woman and aging are the two of the strongest risk factors for developing breast cancer. But beyond that, most cancers remain inexplicable, experts say. Even where a woman has a known risk factor, such as possessing the BRCA1 or BRCA2 gene mutation, such cases account for only 10 percent of breast cancer diagnoses, Runowicz notes (99 of 100 breast cancer patients are women). So, an increasing amount of energy and effort are being put into understanding the causes of breast cancer in seemingly healthy women.
"There still just aren't too many things we can tell a healthy average-risk woman to do," Braun notes. "Eating a balanced diet, limiting stress, exercise -- these are important, but we have not proven definitively that even these things reduce risk. They just make common sense." Eliminating alcohol and tobacco are more strongly linked with reducing risk, but these, too, have limited impact, Runowicz says.
One development in the last five years is the creation of the Mitchell Gail breast cancer prediction model, which allows healthy women to assess their risk of developing breast cancer based on a variety of factors. A specific diagnostic technique, ductal lavage, can further characterize a patient's risk by testing cells in the fluid of the breast ducts. However, this procedure is still undergoing assessment, and practitioners generally use it only in high-risk patients such as those with an elevated score on the Mitchell Gail model.
The most intent focus of work in preventing breast cancer is directed at women who have already had one breast tumor or who have a strong family history, or a known genetic mutation, such as the BRCA1 or BRCA2 mutation. One preventive technique that is gaining popularity is risk-reducing mastectomy, the removal of the breasts as a preventive measure. A 2001 study reported by the Mayo Clinic showed a reduction in recurrence of roughly 90 percent when this procedure was performed on high-risk patients. "And it's becoming more cosmetically acceptable to women, especially with modern day reconstructive techniques," notes Braun.
Another radical preventive procedure for premenopausal women with known high risk of developing breast cancer -- for example, the BRCA1 or 2 mutations -- is risk-reducing oophorectomy, the removal of a woman's ovaries. Reducing ovarian function is thought to reduce breast cancer risk by blocking the amount of estrogen in the blood.
Modulating the amount of estrogen is also the goal of the drug tamoxifen, which has been on the market for 20 years and is primarily used to prevent breast cancer recurrence. It also has been approved in the last decade in the prevention of cancer for high-risk women. But soon a new clinical study, code-named STAR, is to report results on the efficacy of tamoxifen compared to the osteoporosis drug raloxifene in reducing the chance of developing breast cancer in postmenopausal women who are at increased risk. The STAR study, involving 19,000 women, is also examining whether raloxifene may have fewer side effects than those from tamoxifen -- notably, vaginal discharge and uterine cancer.
"There is no doubt in my mind that prevention is the key to solving breast cancer," says Runowicz, who will become president of the American Cancer Society in November 2005. "We will make improvements in enhancing treatment and diagnosis, but an ounce of prevention is truly worth a pound of cure."
Though mammography remains the gold standard for breast cancer screening, doctors are now armed with a sizeable array of new diagnostic options, especially for high-risk women.
But by far the most exciting breakthrough in diagnosis -- one that is sparing needless invasive surgeries -- is sentinel node biopsy, a procedure that has become commonplace in the last decade and has replaced radical lymph node dissections. Traditionally, if a breast biopsy showed cancerous cells, a woman would be brought in for surgery to remove 10 to 15 lymph nodes under her arm. This invasive procedure often required two or three weeks of recuperation. Now, research has shown that the sentinel lymph node is the first to witness a breast cancer spread. So, using dyes and radioactive compounds to identify the sentinel node, doctors can remove only those nodes to determine if the cancer has spread. If the cancer hasn't hit the sentinel node, it hasn't hit the rest of the nearby lymph tissue. On the other hand, if the sentinel node shows evidence of cancer, then the more invasive procedure of removing all of the lymph nodes is done. Removing only the sentinel lymph node can allow breast cancer patients to avoid many of the complications and side effects associated with the traditional so-called axillary lymph node dissection, such as lymphedema (tissue swelling).
Chemotherapy is still a treatment option for most types of breast cancer, but it is being used in more creative ways, depending on how advanced a woman's cancer is and the type of cancer doctors believe she has. In women with early breast cancer, chemotherapy is sometimes used after surgery and radiation to eliminate cancer cells that might still be in the body. In women with locally advanced breast cancer, chemotherapy is given prior to surgery to reduce the size of the tumors in the breast and lymph nodes. And in women with metastatic cancer (cancer that has spread), chemotherapy is used to decrease the number of cancer cells elsewhere in the body, to reduce cancer-related symptoms, and to prolong survival. You can learn more about the "alphabet soup" of the various chemotherapies at breastcancer.org.
But even chemotherapies are changing radically. In the last decade, the expansion of the taxane class of drugs, and its proven effectiveness, has led to dramatic improvements in care for breast cancer patients. Chemo dosages have been reduced, as has the length of treatment. "Quality of life today is dramatically better today than a decade ago," Braun notes.
The focus of research now is on both hormonal and biological agents to reduce the size of tumors, or eliminate them, without surgery. For instance, Herceptin, one of a new class of drugs called monoclonal antibodies, was approved in 1998 by the FDA to treat 25 percent of breast cancers. The drug, effective on metastatic or spreading cancers, targets so-called HER2-positive tumors and blocks the growth of these cells. HER2-positive tumors typically grow faster than tumors that don't have an overexpression or overabundance of the HER2 protein. Braun, Runowicz, and others predict an explosion of drugs like Herceptin that go after specific proteins that bind to cancer cells.
"Gone is the one-size-fits-all approach to diagnosis and treatment," says Cheryl Perkins, MD, senior clinical advisor for Komen. "We must be able to tailor therapy to the individual woman."
Another form of targeted therapy, still experimental, is brachytherapy or partial breast irradiation. A radioactive balloon-like device, or seed, is implanted into the tumor bed following surgical removal of the tumor, making for a localized treatment. While brachytherapy has been used to give a "boost" to the standard radiation treatment to kill remaining cancer cells, it is now being evaluated for use instead of traditional radiation treatments, which radiate the entire breast for five to six weeks and can potentially result in skin irritation and heart and pulmonary problems.
Depriving tumors of a blood supply, theoretically to prevent growth and spread, is another form of biological therapy under review.
Researchers also are focused on finding treatments for women who have not responded, or who are no longer responding, to tamoxifen. The most exciting recent news for such patients -- postmenopausal women for whom doctors are trying to prevent recurrence -- is the use of so-called aromatase inhibitors such as letrozole and exemestane. "It's an exciting time, as we learn how to best use these drugs," Runowicz says.
And this past August, a Pennsylvania firm reported that a simple blood test can predict how long a woman may survive with metastatic breast cancer, giving doctors a tool that some suggest will help customize treatment options further in individual patients. The test measures the number of tumor cells circulating in the blood stream; fewer than five cells in a small vial of blood suggests a woman will live more than 18 months, while women with more than five cells died in an average of 10 months, the study found. About 75,000 women a year are diagnosed with breast cancer that has metastasized, meaning the disease has spread beyond the breast. The new blood test, though experimental, could help doctors figure out earlier if a given treatment course is working; if it isn't, they can switch course, perhaps before it's too late.
The next decade in diagnosis, prevention, and treatment of breast cancer is apt to look startlingly different from the last 10 years, experts say. First, the 2003 mapping of the human genome is expected to cause a burst of exciting therapies. Specifically, doctors expect it will soon be possible to use DNA analysis to uncover patterns in the genes of individual patients with specific types of cancers, then use those patterns to predict the likelihood of disease in other women who are thought to be at high risk. DNA analysis also could be used to select treatments for newly diagnosed patients; doctors would use therapies that have proven effective in patients whose DNA markers are similar to those of newly diagnosed women.
Says Braun: "It's very early for this type of work, but we can imagine the uses. And that's truly the exciting part. We've laid the foundation for an explosion of therapies that may turn the disease on its face."
Experts also have their eye on so-called nano-technology, the use of materials, devices, and drugs that attack individual molecules and atoms. A nano-particle is 1/80,000th the size of a human hair. And if drugs can be found that can hone in on cancerous atomic particles of that size, researchers may stand a prayer of eradicating those tumors without causing damage to healthy cells in a woman's body. One of the first drugs for which FDA approval has been sought to treat metastatic breast cancer is abraxane, a nano-drug. "We're learning to send treatments where they have to go without destroying healthy cells," says Braun.
Meanwhile, patients like Janice Fine are living proof that breast cancer doesn't have to be a death sentence. "It's really important for newly diagnosed women and their loved ones to know that it is possible to cope with breast cancer and to live beyond it," Fine says. "Mine is a hopeful story, and this is why it is an important one to tell, but we need new treatments and a cure so that no woman ever again has to fear death at the hands of breast cancer."
Originally published on LHJ.com, August 2004.
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