Taking Another Look at Breast Cancer

Now that the pink ribbons, public matching funds and feel-good publicity surrounding Breast Cancer Awareness month have died down until October comes around again, let’s take another look at the disease that continues to kill one in eight women in this country – 40,000 a year -- despite improved diagnosis and treatment. 

I am inspired to write this piece, not only because a dear friend has just learned that she is now in the sisterhood of survivors, but also because I’ve read a breast cancer policy paper recently published online by Breast Cancer Action (BCA), a watchdog organization whose mission is “to inspire and compel the changes necessary to end the breast cancer epidemic.”  BCA has been around since my days in women’s health education and advocacy.  Its executive director, Barbara Brenner, is a highly respected activist and policy analyst.  I point this out lest some readers cringe when I say that Barbara is almost single-handedly responsible for “outing” a cancer establishment – comprised of researchers, federal agencies, pharmaceutical companies, providers and medical institutions -- that has not always put patients first in a collective grab for funds and prestige.

BCA frames breast cancer issues differently than the mainstream does as it seeks to change how those issues are understood by the public and how they are approached and resolved by the cancer industry, the health care system and the media.  For example, it challenges the language of cancer – the words that are used when people talk about, say, breast cancer.  It asks, what does “cure” mean?  According to the mainstream, cure is defined as surviving five years following a breast cancer diagnosis.  BCA’s definition is that a person (men get breast cancer too) is cured if, following diagnosis, s/he lives out a normal life span and dies of something else that has not been caused by breast cancer treatment. To BCA, long term survival is not “cure.” When it comes to metastatic disease -- cancer which has spread to other parts of the body -- long-term survival may involve devastating and sometimes life-threatening side effects. One can hardly call that being cured.  According to BCA, “instead of framing metastatic disease as a ‘chronic’ condition that can be successfully managed over a long period of time by the [affected] person, we must acknowledge that metastatic disease is almost always fatal. And we must demand more effective and less toxic treatments that not only extend [life] but also preserve the quality of life.”

Similarly, BCA scrutinizes the concept of prevention.  The mainstream definition posits that prevention occurs when individuals take lifestyle measures or medication that will assure that they never develop breast cancer.  BCA says that while it may be possible to reduce the incidence of breast cancer among a population of people, currently available measures cannot completely prevent an individual from getting the disease.  And so far, available medications that reduce risk actually increase the risk of other diseases.

That’s one reason BCA focuses heavily on environmental health issues.  It believes that “the primary prevention of breast cancer in populations of people, and the reduction of the risk of breast cancer in individuals must focus on identifying and eradicating the involuntary environmental exposures that are contributing to the increased incidence of the disease.”  There is already enough evidence, BCA says, to warrant policy changes that would reduce exposure to toxins linked to breast cancer. That’s why it advocates balancing research expenditures (billions have already been spent, much of it in uncoordinated efforts) with risk reduction initiatives linked to environmental research.

Further, research results and treatment options need to be more available and need to come from unbiased sources.  BCA believes that everyone affected by breast cancer is entitled to an accounting of where research funds have already been spent, and what has actually resulted from the funding.  Equally, people need useful information about effective, affordable and minimally toxic treatment options so they can make sound decisions regarding their treatment.

These are only a few of the issues BCA works on and all of us need to be aware of them.  Improved FDA standards for breast cancer drug approval, targeted therapies based on best practices and individual risk assessment, and disparities in breast cancer incidence among different racial and ethnics groups are in the mix of issues requiring more attention.  (In 1980 breast cancer mortality rates for African American and white women were similar. Ten years later black women had a 16 percent higher mortality rate than whites. By 2004 that gap had widened to 36 percent.)

"The road ahead is long but it is not endless,” says Barbara Brenner, reflecting on the fact that a new administration will soon be dealing with critical health issues.  “Change occurs because people demand it.  It comes from the bottom up, not the top down.  Power relationships that now dominate how decisions are made about treatment and research must be challenged if we are to end the breast cancer epidemic.”