In the state of California, over four thousand people will die of breast cancer this year. Some of those who die will have faced locally advanced or metastatic disease when their breast cancer was first diagnosed, while others will have experienced a metastatic recurrence from a few months to m mm any years after their initial diagnosis with earlier stages of breast cancer. Those who die of the disease and their families will have had to deal with the treatments and symptoms of advanced breast cancer in the months and years prior to their deaths. Clearly, the human toll taken by breast cancer in California is immense.

At the same time, most public attention devoted to breast cancer is firmly focused on issues related to the screening, early detection, and treatment of small primary tumors that are still at a curable stage. While commendable, this “pink” focus is limited, for two important reasons. First, not all breast cancers are curable, even if caught early; the paradigm of early detection is clearly limited by biological realities. Second, the needs exist of the many thousands of women already living with high-risk and metastatic breast cancer in California today, and will continue to make demands on us tomorrow. To help these women and men, we must understand more clearly what the barriers and inequities to good breast cancer care are.

In the years that I have been advocating for patients and families dealing with advanced breast cancer, I've observed a strong emphasis on the screening and treatment of early-stage breast cancer. Traveling and consulting around the country, it's been clear to me that few support organizations have been able to adequately address the needs of patients with advanced breast cancer, despite their obvious concern and willingness to do so. A survey conducted by the National Alliance of Breast Cancer Organizations in 2001 found fewer than 20 support groups across the United States to meet the specific needs of metastatic breast cancer patients, from among the nearly one thousand groups then in existence.1 Most of the breast cancer survivors who run and staff breast cancer organizations are still themselves personally at risk for recurrence. Being long-time members of this “sisterhood,” they have lost many friends and may find this aspect of breast cancer depressing and emotionally threatening.

It is my conviction that these feelings within the breast cancer community and in the public at large must be confronted and overcome if we are to move effectively into researching these most difficult areas of breast cancer. This paper will try to take a positive step in that direction, by focusing on issues that are more difficult to talk about: the needs and experiences of women diagnosed at later stages of the disease, who tend to be disproportionately poor and black.

First, of course, we must define the dimensions and specifics of this population. Who are they? Because length of survival is so variable, no one really knows how many people are living today with locally advanced and metastatic breast cancer. Figures relating to incidence and mortality give us snapshots when the disease is diagnosed and when a patient dies of breast cancer. Cancer registry data offer information about initial treatments. But overall we have neither insight into the actual numbers of people with advanced breast cancer, nor their experiences with access to and utilization of the health care system regarding their treatment.

Between one half and two thirds of American women diagnosed at Stage II and III, an annual figure estimated at 45,000–50,000, will develop metastatic disease within five years of diagnosis. In combination with the estimated 10,000–15,000 women who present with Stage IV disease each year, and the 25 percent whose disease recurs after five years, this means that every year between 73,000 and 86,000 American women discover that they have metastatic breast cancer.2 Once breast cancer metastasizes, it is generally considered incurable. However, it is very often treatable. Average survival following a diagnosis with metastatic disease is still generally estimated to be from two to three and a half years. According to Dr. Susan Love, 25–35 percent of metastatic patients live at least five years, and about 10 percent live ten years or more.3

While there exists no completely accurate count of the numbers of women living with advanced breast cancer today in the United States, the SEER database documents that 24 years after their diagnoses, nearly half of all women diagnosed with invasive breast cancer during the late 1970s have died of their disease.4 While earlier diagnosis and treatment have almost certainly improved on the above-quoted, long-term 48.5 percent mortality figure in recent years, it is clear that a large population of several hundred thousand women at any given time are facing the challenges of metastatic disease. Many more at high risk of recurrence are living daily with the fear their cancer will return.

The general public may have misconceptions about how old breast cancer patients really are. Since it seems that the majority of public figures and advocates who are breast cancer survivors are women in their 40s and 50s, many people are surprised to hear that the median age in new breast cancer diagnoses in the United States is 63, meaning that half of all patients are older. So the population of breast cancer patients is in general older than its public presence would indicate.

In the ever more commercialized flurry of breast cancer charitable galas, sales promotions, walks and runs that saturate the media each October, elderly women, minority women, and women with advanced breast cancer remain largely invisible. For many years, women with high-risk and metastatic breast cancer have complained bitterly that their experiences are not represented in the media or by advocates.5

By the same token, the public doesn't know much about the population of very young breast cancer patients, those women in their 20s and 30s so often diagnosed with aggressive cancers. We do know that this population is not evenly distributed. While only 25 percent of white women are diagnosed with breast cancer prior to the age of 50, fully one-third of female black breast cancer patients are aged less than 50. The age-specific breast cancer incidence for black women under 35 is twice what it is for white women, and the mortality rate is three times higher.6

Since only 3 percent of the overwhelmingly white, under 65, breast cancer patient population enrolls in clinical trials, what we know from clinical studies also reflects disparities in race/ethnicity and in age, rather than shedding light on them. Likewise, there are disparities when it comes to access to care, utilization of treatment, and outcomes for people of different ages, races/ethnicities, and socioeconomic status, to be discussed in greater detail later.

Despite many studies on these disparities, much still remains to be learned. In part this is a function of how data are gathered and recorded in not only the California Cancer Registry but also in all cancer registries, where the data gathered are almost entirely bracketed by the beginning and end of the cancer experience, focusing as they do on diagnosis, initial treatment, and mortality. An argument can be made that these data are far more descriptive for the women with early stage breast cancer than they are for women with high-risk and metastatic breast cancer, who continue to interact with the health care system for a period of many years.