30% for 30% - A Good Idea Worth Revisiting

BY Dian "CJ" Corneliussen-James

The most devastating and feared breast cancer is metastatic (stage IV) breast cancer. This occurs when breast cancer spreads to distant, non-adjacent parts of the body. It strikes 30 percent of breast cancer patients and is fatal, taking lives on average within two to four years of diagnosis.

2014 Update: Median survival is currently estimated at times at 18-24 months and at times at two to three years. Given that patients are catalogued in the statistics at their initial stage of diagnosis and not re-catalogued when they progress to stage IV, statistics for the metastatic community can be difficult to determine.

Clearly ending death from metastatic breast cancer (MBC) is of critical importance not only to those living with it, but also to anyone who has had, or may at some point develop breast cancer. Unfortunately, research for MBC is vastly underfunded. Indeed, research for all metastasized cancers is collectively funded at only 2 percent, and MBC is a subset of that group. (A recent quote of 5 percent in regard to metastatic cancer research came from averaging U.S., Canadian and European research portfolios.)

2014 Update: The 5 percent figure appeared in the article “Cancer Metastasis as a Therapeutic Target” written by Patricia S. Steeg PhD and Jonathan Sleeman PhD. The figure was derived by analyzing reports and scanning for key words such as metastasis, dissemination, progression and invasion; thus the figure includes research to prevent metastasis and study the progression to metastasis as well as to control, stop or otherwise impact a metastasis that has already occurred. Country statistics ranged from a high of 11 percent in Switzerland to a low of 2.3 percent in the US. The entire article can be read in the European Journal of Oncology, 46th edition, pages 1177 – 1180 published in 2010. Steeg Sleeman Report 

So where does most of the money go? It goes predominantly into prevention and early detection. If one looks at the funding distribution pie charts of various organizations, these two categories are inevitably included. What is not immediately apparent is that much of the funding designated for other categories, such as biology and etiology, is also spent on issues pertaining to prevention and early detection. By comparison, MBC research is so poorly funded that it rarely even appears on a pie chart.

2014 Update: Research pie charts found on organizational websites follow the “Common Scientific Outline" or CSO, a classification system organized into seven broad areas of scientific interest in cancer research. None of these categories is “metastasis”, which explains why the term does not appear on the pie charts.

The preoccupation with prevention and early detection has continued since at least 1998 when the National Cancer Institute set these two issues as the national breast cancer focus. Reaffirmed in 2004, the policy has not changed — neither has the fact that each year roughly 195,000 Americans continue to be diagnosed with breast cancer, that 30 percent of these patients continue to metastasize, and that 41,000 continue to die each year.

2014 Update: The just released World Cancer Report by the World Health Organization also recommends a focus on prevention and early detection, continuing the long established research priority. It appears that those who metastasize remain a negative priority. Indeed, according to Christopher Wild, Director of the International Agency for Research on Cancer, "We cannot treat our way out of the cancer problem. More commitment to prevention and early detection is desperately needed in order to complement improved treatments and address the alarming rise in cancer burden globally." Very discouraging. Read the CNN report 

While one cannot dispute that prevention and early detection are worthy causes, one can indeed question the inequity in the distribution of funds. Further, one can certainly ask how long we plan to direct the preponderance of research in this same direction, especially in light of what has, or better said has not been achieved.

Quite a few scientists say privately that prevention in the foreseeable future is unrealistic because among other things, we do not even know what causes some cancers, including breast cancer and thus have nothing specific against which to target our efforts. Likewise, early detection has failed to effectively reduce death because some patients have metastatic cells prior to developing a detectable breast cancer. And thus even stage 0 patients can and do metastasize.

2014 Update: The new Canadian study supports the statement that early detection is not lowering the death rate. For 25 years, the researchers followed nearly 90,000 women who were randomly assigned either to get screening mammograms or not. Dr. Cornelia Baines, lead investigator, stated "The number of deaths from breast cancer was the same in both groups". Read the Health Day Article

Research for other aspects of breast cancer is certainly being done, but on a diminishing scale. At the bottom of the scale is MBC — the only breast cancer that kills.

In response to a small but nevertheless persistent outcry that not nearly enough is being done, we have recently seen one or two promises to address the issue of MBC. Yet in reading the fine print we see that what is being discussed is research to prevent breast cancer from metastasizing — not research focused on interceding after the cancer has spread.

Is there a difference? You bet. Although any cancer research can at times yield new information relevant to another area of research, significant progress usually occurs only when research is directly focused on the problem at hand.

Metastatic cancer exists in a different realm than non-metastatic cancer. Thus MBC is far more apt to benefit from research undertaken for another metastatic cancer than it is from research involving non-metastatic breast cancer. Unfortunately, since the entire field of metastatic cancer is funded at only 2 percent, there is limited related research to draw upon.

2014 Update: The use of the term metastasis has since overflowed into numerous areas. Metastasis research is now commonly used for research to prevent metastasis, which in its broader sense is any treatment of primary breast cancer. After all, it is impossible to die from breast cancer unless you metastasize, thus the only reason for to put a patient through chemotherapy, radiation, hormone therapy or other treatment is to prevent metastasis. There are even metastasis summits where discussions are limited to the topic of prevention of metastasis.

In addition, the term metastasis research also includes research to determine how primary breast cancer evolves into metastatic breast cancer. Some proponents say this equally helps the metastatic patient. While I don’t deny that we might learn something helpful along the way, I do not think metastasis reversal – suggested by some -- is plausible. In short, keyword searches can be very misleading, making it extremely difficult to identify research which directly pertains to the already metastasized patient. And it leads to claims of considerably more research being done for our community than is actually taking place.

So just what is the reluctance to sufficiently fund metastatic cancer research?

Historically, metastatic cancer has been considered too complex an issue to tackle with any reasonable expectation of success. Yet times, and the state of science have changed.

2014 Update: Danny R. Welch, Ph.D., founding director of the Department of Cancer Biology and director for National Foundation for Cancer Research Center for Metastasis Research for The University of Kansas Medical Center, chair and professor of Cancer Biology at The University of Kansas School of Medicine and is Kansas Bioscience Authority Eminent Scholar not to mention past president of the Metastasis Research Society, has said: “Within 10 years, suffering from and potentially death from metastatic breast cancer could be reduced significantly if the research were fully funded.” What do we mean by fully funded? METAvivor advocates 30 percent of research funds going to stage IV cancer overall. According to Dr. Welch, this would certainly do it. Would somewhat less do it? Perhaps. But will 2-5 percent do it? No.

There are now many dedicated career metastasis researchers, who have the education, the experience, the skills, the ideas, the proposals and the scientific insights to make a difference. What they lack is the funding.

I could make the argument that MBC research, and not prevention and early detection, should be the premier focus for breast cancer research. Clearly those with MBC have the most urgent need for research because it is their lives, and only their lives, that are imminently at risk. Equally important is the fact that ending death from MBC is the only means to simultaneously bring peace of mind and the promise of longevity not only to all stages of breast cancer patients but also to a general public that worries about being diagnosed. By contrast, prevention and early detection are relevant only to the undiagnosed. Once a person becomes a patient, these issues are of no further value.

Yes, I could make my argument, but I am unlikely to win. Thus instead, I advocate for what I think is both fair and achievable – 30 percent for 30 percent. Thirty percent of all breast cancer patients metastasize and die. Thus 30 percent of all breast cancer research funds should be dedicated to MBC research — exclusive of research to prevent metastasis, which pertains to the non-metastatic patient and thus belongs in the domain of non-metastatic research. If we could achieve 30 percent for 30 percent, we would save countless lives.

2014 Update: Although METAvivor was established solely for metastatic breast cancer and as such advocates for that disease, the reality is that 30% of all cancer patients die as a result of their cancer and all metastatic cancer is equally underfunded. The American Cancer Society’s Fact and Figures 2014 Report states that “The 5-year relative survival rate for all cancers diagnosed between 2003 and 2009 is 68%”. Thus 32% of cancer patients die within five years of their diagnosis; clearly more will die later. There is no denying that prevention and early detection does not work for large segments of the population. If we want change, we must address the metastatic condition and we must do that by raising our voices and insisting that research to find solutions for the already metastasized patient receives its fair share – 30 percent for 30 percent.

comments powered by Disqus