In 1971 U.S. President Richard M. Nixon declared a war on cancer and poured more than $100 million into cancer research due to public outcry against the disease. Cancer kills more than half a million Americans each year (American Cancer Society [ACS] 2006, p. 4). One of the most common types of the disease was also one of the first identified in humans, breast cancer. Physicians have recognized it for thousands of years. However years of research and hundreds of millions of dollars have not resulted in an exact cause or cure. Breast cancer is still a major health problem in the early-twenty-first century and one out of eight American women was diagnosed with the disease in 2005 (ACS 2006, p. 14; Olson 2002; Surveillance, Epidemiology, and End Results Program [SEER] 2002, p. 1). The history of breast cancer is filled with controversy because of the highly gendered nature of the disease and the status of the female breast as a cultural symbol of sexuality.
INCIDENCE RATE, MORTALITY RATE, AND TREATMENT OPTIONS
Breast cancer is the leading cancer diagnosis among American women, accounting for nearly one in three cancers in that group (ACS 2006, p. 1). Figure 1 depicts incidence of and death rates from female breast cancer and rates of late-stage breast cancer diagnosis in the United States from 1997 to 2002. Cancer incidence is measured as the number of new cases each year for every 100,000 women while the death rate is measured as the number of deaths each year for every 100,000 women. Overall these figures seem promising; the declining fatalities and increasing five-year survival rates indicate that larger numbers of women survive a cancer diagnosis. However the incidence of female breast cancer has steadily increased since 1980. The increase is largely attributed to more mammography screenings in women ages forty and over. For example, 29 percent of women in the forty and over group were tested in 1987 as compared to 70 percent in 2000. Although the mortality rate declined during the 1990s, rates of late-stage (metastases) breast cancer diagnosis have remained stable since 1980 and hover around 7 per 100,000 women (National Cancer Institute [NCI] 2005a, p.1). Patients diagnosed in later stages are less likely to benefit from treatments or recover as easily as those whose diseases were discovered at earlier stages.
Cancer-related health disparities remain among population subgroups in the United States. Both incidence and death rates generally increase with age—more that 95 percent of new cases occurred in women forty and older. The average age at diagnosis is sixty-one. Caucasian women have the highest incidence of breast cancer (141.1 per 100,000, 1998–2002) but black women have the highest rate of breast cancer death (34.7 per 100,000). Hispanics, Asians, and women of other minority groups have lower incidence of and death from breast cancer (ACS 2006, p. 2). A recent study also confirmed treatment disparities between Caucasian and minority women; minority women with early-stage breast cancer received fewer cycles of cheomotherapy than Caucasian women (Bickell, Wang, Oluwole, et al. 2006).
Early remedies for the cancer were surgical or conservative. Doctors preferred conservative treatment, which included purging, specific diets, bloodletting, and medicines. In the nineteenth century, Viennese surgeon Theodor Billroth confirmed that breast cancer traveled to regional lymph nodes before spreading to other parts of the body. As a result radical mastectomy, also known as Halsted mastectomy, was the major treatment for breast cancer until 1979. The radical mastectomy removes the breast and the underlying muscle in the chest wall or pectoral muscle. In the 1980s modified radical mastectomy became standard, while breast conservation therapy (BCT) was the preferred treatment in the 1990s (Altman 1996, Olson 2002). BCT combines a lumpectomy with radiation therapy. A modified radical mastectomy removes the whole breast, some axillary lymph nodes, and possibly part of chest wall muscle. A lumpectomy removes only the tumor and a rim of normal surrounding breast tissue (NCCN 2005).
Therapies in the early twenty-first century are based on a number of factors, including age, onset of menopause, severity, histologic and nuclear grade of the primary tumor, estrogen-receptor (ER) and progesterone-receptor (PR) status, measures of proliferative capacity, and HER2/neu gene amplification. Patients can choose between standard treatments and clinical trials. Standard treatments include surgery, radiation therapy, chemotherapy, and hormone therapy. Typical surgeries include lumpectomy, partial mastectomy, total mastectomy, modified radical mastectomy, and radical mastectomy. In 1990 the National Institutes of Health (NIH) Consensus Development Panel concluded that BCT provided the same survival rates as women who chose total mastectomy and axillary dissection. Accordingly the NIH recommends BCT for women with early-stage breast cancer (stages I and II). Despite the NIH recommendation, the modified radical mastectomy remains the most common surgical procedure for women diagnosed with early-stage breast cancer (Altman 1996, NCI 2005b). A recent study concluded that more patient involvement in treatment decision making was associated with greater use of mastectomy (Katz, Lantz, Jamz, et al 2005). Concern about disease recurrence was cited as the most influential factor when women chose mastectomies over BCT.
Radiation therapy uses high-energy x-rays or other forms of radiation to destroy cancer cells in the breast, chest wall, or lymph nodes. It is generally used after surgery, especially as part of BCT. The treatment commonly follows a mastectomy in cases with either of the following conditions, a tumor larger than five centimeters in size or positive lymph nodes. There are two different types of radiation therapy: external beam and internal. External beam therapy, which is most common, uses an external machine to deliver the radiation, while a radioactive substance (usually sealed in needles, seeds, wires or catheters) is inserted into the body in or near the tumor in the internal method (NCCN 2005, NCI 2005b).
Chemotherapy and hormone therapy are systemic treatments, meaning they both use drugs to stop the growth of cancer cells. Chemotherapy can be used before surgery (neoadjuvant treatment) and after surgery (adjuvant therapy). The goal for neoadjuvant treatment is to shrink the tumor enough to make surgical removable possible, especially for women who have a large tumor and prefer to undergo BCT. Adjuvant therapy kills cancer cells that break away from the primary tumor and spread through the bloodstream, and do not show up on diagnostic tests such as an X-ray and CT scan or can not be felt during the physical examinations by physicians (NCCN 2005, NCI 2005b). Systemic treatment can be given intravenously or orally and is more effective when combinations of more than one drug are used together. Chemotherapy has been recommended for women with positive lymph nodes since 1985, but younger women are more likely to receive chemotherapy than older women. For example, in 2000, 86 percent of women ages twenty to sixty-four with node-positive breast cancer received chemotherapy as compared to 45 percent of women sixty-five and up with similar conditions. For women whose breast cancers have spread to other organs in the body (metastases, stage IV), systemic treatment is the main treatment.
For women with estrogen- and progesterone-receptor positive tumors, hormone drugs are given after standard treatment to prevent recurrence. There are two types of hormone drugs, anti-estrogen drugs and aromatase inhibitors. Tamoxifen is the most commonly used of the anti-estrogen drugs, which act to block estrogen after it is produced. It is often prescribed for five years. Aromatase inhibitors, which interfere with the production of estrogen, have the same or better effects, but fewer side effects compared with tamoxifen. Accordingly they are the preferred adjuvant hormone therapy for postmenopausal women (NCCN 2005).
In addition to standard treatments, patients can also participate in clinical trials testing promising treatments. A new treatment is normally studied in three phrases of clinical trials before it is eligible for approval by the Food and Drug Administration (FDA). The last phase involves enrolling thousands of patients with one group receiving the standard treatment and the other group receiving the new treatment. Between 2000 and 2005, a clinical trial tested the effectiveness of trastuzumab (also called Herceptin) on women who have tested positive for the HER2/neu receptor. The study enrolled more than 3,300 patients with early-stage breast cancers and positive axillary lymph nodes and concluded that patients who received trastuzumab combined with standard chemotherapy had a 52 percent decrease in disease recurrence compared to patients treated with standard chemotherapy alone. Because of this finding, trastuzumab has become part of standard chemotherapy treatment for about 20 to 25 percent of breast cancer women whose tumors are HER2/neu receptor positive (NCI 2005c).
SOCIAL CONSTRUCTION OF BREAST CANCER
Gender-roles in a patriarchal society are established with man in mind and female sexuality is constructed to complement male sexuality. Thus a woman's breast performs both reproductive and sexual functions; a nutrition source for infants also serves as erotic draw for men. Women's subordinate position also manifests itself in breast cancer treatment, where patients tend to be female and physicians male. In the disease's early history, women often delayed seeking medical treatment because of shame and stigma. After diagnosis women usually left the treatment decision entirely in the hands of their male physicians. This paternalistic relationship between breast cancer patient and physician persisted until major social changes transformed medical practice in the 1960s and 1970s (Casamayou 2001, Olson 2002, Young 1998).
At the macro level, post-World War II economic affluence led to significant cultural and structural changes in the United States. As suggested by political scientist Ronald Inglehart, people became more sensitive to quality of life issues such as social justice, equity, and citizen participation in the public decision-making process. Economic affluence also created more than 72 million baby boomers during the period from 1946 to 1964. Social movements in the 1960s such as civil rights, environmental, and feminist movements as well as the anti-Vietnam War movement, were products of these cultural and social changes. These macro-level changes set a new stage for patient advocates to challenge the medical establishment and demand the federal government reexamine issues related to women's health and patient's rights.
At the micro level, the federal government did not have a formal policy about cancer until public concern about the disease replaced fear of infectious diseases in the 1930s. As a result of the new public interest, the NCI was established in 1937. Funding for biomedical research emerged as the heart of federal health policy after the World War II—a triple alliance among congressional representatives, executive agency personnel, and lobbyists was formed to secure funding. Key congressional supporters included John Fogarty, chair of the Labor-Health, Education, and Welfare subcommittees of the appropriations committees of the House and Senate, and Lister Hill. Outside the government, health activist Mary Lasker formed the first lobbyist group for cancer research with her own wealth after her husband died of cancer. Backed by the triple alliance, the medical establishment basked in an unprecedented position of prestige and power over patients.
However other social forces emerged during the 1970s that changed paternalistic relationships between patients and physicians. First media coverage of prominent women's diagnoses and cancer treatments led to a societal openness toward the disease. These women included actress and diplomat Shirley Temple Black; Betty Ford, wife of President Gerald Ford; Happy Rockefeller, wife of politician Nelson Rockefeller; and writer Betty Rollin. Second the 1960s feminist movement created a new generation of educated women with professional and organizational skills. One of them was Rose Kushner whose breast cancer experience led her to become the first patient consumer advocate. She campaigned to change the one-step (biopsy and mastectomy) process to a two-step process of breast cancer diagnosis and surgery, and promoted the patients' rights to shop for the surgeon after diagnosis. Other survivors and advocates shared similar views and believed that more funding was needed to further lower breast cancer deaths and that patients should have greater involvement in treatment decision making. Many were also disturbed by the 1977 FDA policy that banned fertile women from toxicity studies and from initial safety and efficacy studies. Under the guise of protecting the fetus, this policy resulted in excluding many women from accessing major clinical trials. Angered and frustrated with unfair medical practices, breast cancer survivors formed grassroots patient advocacy organizations; eventually national breast cancer advocacy groups like the National Alliance for Breast Cancer Organizations (NABCO) in 1986, Y-ME in 1978, Susan B. Komen in 1982, National Breast Cancer Coalition in 1991, and Living Beyond Breast Cancer in 1991 were established. The grassroots breast cancer movement led to the biggest increase in federal funding for breast cancer research. For example, in 2005, the NCI alone invested $570 million in breast cancer research, while the entire public funding for breast cancer research was about $600 million in 1993 (Casamayou 2001, NCI 2006, Oberman 1994).
BREAST CANCER AND THE IMAGE OF WOMEN'S BODY
Breast cancer diagnosis and its related treatment inflict physical as well as psychosocial discomfort on patients. Some discomforts such as fatigue and hair loss are transitory, but others such as weight gain, premature menopause, and the loss of a breast linger on. Research focuses most of its attention on the effect of breast surgery on women's sexuality and body image. The mystique of a woman's breast in popular culture has deeply affected how women and men view themselves and their partners. Popular media reinforces these images by linking a woman's beauty to a slim, fit body with large breasts (Altman 1996, Dinnerstein and Weitz 1998, Olson 2002). Even the ACS held breast cancer survivors to these standards of beauty. During the 1980s, Darlene Betteley, a volunteer for the Reach to Recovery Program, was required to wear a prosthesis for hospital visits because the ACS did not want women who just had a mastectomy to be reminded of how the surgery changed a woman's exterior. According to the ACS, a woman without a breast is not a normal woman and volunteers were expected to look normal during hospital visits (Batt 1998).
Contrary to popular belief, a majority of women who had mastectomies did not undergo breast reconstruction, even when the procedure would be covered by medical insurance. Empirical studies on the impact of breast surgery on the quality of life among survivors revealed mixed findings. Some reported that women who had lumpectomies were more satisfied with their body image and marital relationships than women who had mastectomies, but others reported no significant differences between the two groups in terms of psychological well-being and marital relationships (Altman 1996; Fung, Lau, Fielding, Or, and Yip 2000; Lichtman, Taylor, and Wood 1988). Another effect of breast cancer treatment on a woman's body is weight gain. Studies confirmed that weight gain and obesity are common in women diagnosed with breast cancer. Weigh gain was also related to higher rates of breast cancer recurrence and mortality, in particular in women who had never smoked (Irwin, McTiernan, Baumgartner, et al 2006; Kroenke, Chen, Rosner, Holmes 2005).
The post-World War II generation of women transformed societal reactions toward breast cancer because of their own breast cancer experiences. These courageous women challenged cultural norms about women's breasts and empowered patients' rights in breast cancer treatment. Today breast cancer research and survivors receive unprecedented support from governments and communities. Early-twenty-first-century studies also confirmed that the quality of post-treatment life was better for women who were actively involved in the treatment planning (Hack, Degner, Watson, and Sinha 2006). New patient advocacy organizations targeting specific groups such as Sisters Network Inc and Young Survival coalition were established in the late-1990s. Despite this progress, the incidence of breast cancer remains higher than it was in the mid-1970s and cancer-related disparities remain among population subgroups. Future study should focus on how certain cultural practices or beliefs affect breast cancer diagnosis and treatment decisions. Finally women who are uninsured or underinsured are less likely to receive the same quality of treatment as their peers, which may contribute to these disparities.
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