Why doesn't anyone talk specifics about metastatic breast cancer?

Did you know that October 13th is Metastatic Breast Cancer Awareness Day? One might wonder why it is necessary to parcel out a specific day in October to take note of something like metastatic (stage 4) breast cancer. After all, the month is already dedicated to breast cancer awareness. But there is little attention to metastatic breast cancer in mainstream culture. The pink ribbons, balloons, and slogans say nothing of these breast cancer realities. They speak only to the festivity and visibility of the cause, just like the thousands of other pink ribbon displays and products saturating the cultural and consumer landscape and claiming to raise “awareness.”

Metastatic (Stage IV) breast cancer is cancer that has spread from where it originated to elsewhere in the body, usually the bones, liver, lungs, and brain. It is the initial diagnosis for 6 to 10 percent of breast cancer cases each year in the United States. However, and surprising to many, 20 to 30 percent of people who were initially diagnosed with an early stage breast cancer eventually go on to develop metastatic disease. Such recurrences can happen even after there has been no evidence of disease for 15 years or longer. Metastatic breast cancer is incurable, and treatment is life-long. Eventually, every drug that is used to slow the progression of the disease fails. Data from the National Cancer Institute shows that the five-year survival rate for people diagnosed with metastatic breast cancer is still only about 20 percent, and the average prognosis is only two to four years. Nearly 40 thousand women and hundreds of men die of metastatic breast cancer every year, a number that has barely changed in four decades despite the billions of dollars raised for breast cancer.

When metastatic breast cancer disease does get attention, the light usually shines on the good, strong, positive, and hopeful side of cancer, the obituary of someone who fought courageously but eventually succumbed to the disease, or the hopeful stories and reports about incremental medical advancements. But the regular story arcs of triumphant survivorship do not apply to this population. These patients do not finish treatment. They seldom win the fight. As a result, there is very little understanding of the realities of this disease.

C.J. (Dian) Corneliussen-James

C.J. (Dian) M. Corneliussen-James, breast cancer survivor and founder of METAvivor Research and Support, Inc., says that the story of breast cancer metastasis is largely missing from awareness messages because,

To put the statistics out there would be to admit that despite the billions spent on breast cancer over the last decade, and despite all the hype, media, happy faces, and tales of beating the disease, we have made virtually no progress in halting death from this disease. This would not be good for the fundraising campaigns of the big cancer organizations.”

Indeed the fundraising impetus and desire to create a recognizable brand among many breast cancer organizations has contributed to a slew of superficial awareness messages, narrow representations of survivorship, and an abundant focus on simple actions that do little more than fuel the pink fundraising machine while simultaneously preoccupying the public with fear of breast cancer, hope for a cure, and the promise of early detection and lifestyle as the best weapons against the disease. The strategy has not succeeded in eradicating breast cancer, raising consciousness about the realities and complexities of the disease, or alleviating the suffering of those who are most likely to die from it. In addition to its invisibility to the public eye, metastatic disease is also missing from research allocations and support scenarios.

A large proportion of the monies raised in the name of breast cancer never make it to any research agenda. When they do, however, the focus of that research is primarily on early detection and prevention—not so much systemic prevention such as attention to environmental exposures, but individually-focused prevention (e.g., does a particular supplement, food, or behavior affect the development or progression of breast cancer?). There is a clear place for this type of research. Yet of the $6.2 billion dollars allocated to the National Cancer Institute for cancer research, Dr. Danny Welch emphasizes that less than 5 percent of that budget focuses on research to understand the fundamental mechanisms of cancer metastasis (and that’s metastases developing from all tumor types, not only breast cancer). Welch argues that if metastatic research were fully funded there could be a significant reduction in suffering and death from metastasis. Dr. Welch is one of only 1000 researchers worldwide studying breast cancer metastasis specifically.

Abundant attention to fundraising, generalized awareness, and early detection for those who do not have breast cancer and are not likely to die from the disease creates a situation in which those who are most in need of social support, resources, and understanding are largely ignored. C.J. reports that at last count there were 41 support programs in the United States oriented to metastatic breast cancer and ten of these were located in one state, New York. Most of the country has no support systems in place, partly because the story of metastasis does not blend in with other popular programs. The desire to keep the breast cancer story one of hope and success makes fundraising campaigns more fun and successful. It also makes the discussion of breast cancer more palatable for those who have not yet been diagnosed with metastatic disease. C.J. says,

Earlier stage individuals would be frightened if we spoke openly about our situations. They do not wish to hear that metastasis can and does happen all too easily and that healthy lifestyles, excellent medical care, early detection and seemingly successfully concluded treatment, do not necessarily protect you from metastasis.

Anyone can be diagnosed with metastatic breast cancer, regardless of the stage of an initial diagnosis or the number of years after original treatment ended. The lack of attention and resources to metastasis reinforces the false impression that current strategies in the so-called war on breast cancer are working. For many, it is unsettling to complicate this view. If the end in mind is to significantly reduce breast cancer incidence and mortality, the story of breast cancer metastasis—in all of its uncertainty and complication—must be heard.

2013-10-14-MBCalliancelogo-thumbA new alliance formed by fifteen cancer groups, the Metastatic Breast Cancer Alliance, plans to work “towards a time when all patients with metastatic breast cancer and their caregivers can access the care and services they need, and find real hope in research focused on prolonging their lives,” states Musa Mayer, Founder, AdvancedBC.org. The first project will be to assess gaps, duplication and opportunities in the field to reach a consensus on a path forward in addressing the unique needs of those living with metastatic breast cancer. The Alliance will issue a status report in early 2014 and also plans to advance metastatic research and public policy to address the needs of this population. Perhaps this new initiative will help to change the direction of breast cancer research and support.

For now, researchers like Dr. Danny Welch and his research team are focusing on the following key questions about metastasis:

  1. Why do some cancer cells metastasize and others do not?
  2. Why do some patients develop metastases while others do not? It may be that the tendency for cancer cells to spread is from maternally inherited genes – which are expressed in our cell’s energy producing factory (mitochondria).
  3. What are the enzymes that help produce proteins, such as KISS1, that stop the spread of metastatic cells? Defects in these enzymes could be responsible for allowing metastasis to occur.
  4. What are the cell partners that interact with proteins, such as BRMS1, in the nucleus of the cell to suppress metastasis? This will help to further determine how such proteins work to suppress metastasis and facilitate new anti-metastatic therapeutics.
  5. What molecules allow breast cancer cells to spread and thrive in bone? The team is using a 3-dimensional bone model to identify these molecules that may become targets for new therapeutic interventions.

Until such questions can be answered and used to develop therapeutic approaches for suppressing the spread of cancer, the death rate will not decrease.


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