The Elephant in the Pink Room

Just grabbing this to keep it on the blog in case the paper removes the link.  And of course because I am me so I can continue to fix my mistakes!

The Elephant in the Pink Room

In July of 2012, at age 49, I was at the peak of fitness.  I’d just completed my second Olympic distance triathlon, and was ready for more of the same in my fifties. But one month later, after the sudden appearance of a large lump, I was diagnosed with breast cancer.  It was ER+ (estrogen receptor positive) and HER2+ (an aggressive subtype marked by an overabundance of the protein HER2). Following a challenging year of chemotherapy, surgery, radiation, and the HER2 targeted therapy Herceptin, I was, according to available detection technology, cancer-free.  

Fast forward to May 2014: nine months after my last Herceptin infusion and two months after a clear CT scan, a lump appeared suddenly in my neck. I was quickly diagnosed with metastatic breast cancer (MBC) in my lungs, lymph nodes, and liver.  Scans halfway through my current treatments showed no detectable lesions in my lungs or lymph nodes, and those in my liver are much smaller.  Even if I am “NED” (no evidence of disease) following this regimen, I will continue it until it loses its effectiveness. Then my oncologist and I will determine my next strategy, because while MBC is treatable, it is not curable.

October is Breast Cancer Awareness Month.  The 13th - just one out of 31 days - is dedicated to metastatic breast cancer awareness, despite the fact that 30% of women with breast cancer will be diagnosed at some point with MBC. Metastasis is defined by its prefix “meta,” which means beyond, and the root word “stasis,” meaning a state of stability or control. Approximately 6 to 10% of initial diagnoses are Stage IV, or metastatic. The remaining cases of MBC may be detected weeks, months, or years after initial diagnosis and treatment.  

During this month’s races, fundraisers, and other awareness events, I feel like a fish out of water.  I am one of that 30% now, without the tidy story of a “battle” fought and won.  Despite the extraordinary work of advocates and the strength in the community of people living with MBC, our stories are rarely included in October’s media portrayals of breast cancer survivors.  I appreciate this opportunity to share some information about MBC.

Breast cancer localized in the breast does not kill.  It is the spread of cancer from the breast to vital organs that results in a terminal diagnosis. Metastases typically occur in the lungs, liver, lymph nodes, brain, and/or bones.  Metastasis comes to women (and men - 1% of breast cancer patients) of all ages and may arise despite the stage at initial diagnosis, whether 0, I, II, or III.   Laudable though they are, the goals of awareness and early detection do not bring to light important truths about breast cancer. According to cancer research advocate Debra Madden, “Regardless of when breast cancer is diagnosed, it is the molecular characteristics of the cancer (such as HER2 and hormonal status) that most impact the recommended treatments and outcomes.” Additionally, more and more patients are diagnosed while younger than recommended screening ages.  MBC is not a disease of people who didn’t monitor their health well enough and “let the cancer progress too far.” Though there are many factors to consider regarding recurrence risk, early detection does not guarantee recurrence-free survival.

Approximately 40,000 individuals die each year of MBC, a number that has not changed since the year 2000, per the Metastatic Breast Cancer Network (MBCN).  I am forever grateful to the scientists that identified the HER2 protein and developed Herceptin.  While long term survival rates have improved because of such advances in targeted treatment, the number of deaths has remained the same.

Though an estimated 155,000 individuals are living with MBC in the U.S., I have never seen a media focus on this group in October.  Medical sociologist Gayle Sulik notes that “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources.  Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.”  And breast cancer is indeed more complex than awareness campaigns reveal.  According to the National Breast Cancer Coalition, we still do not know how to prevent recurrence or metastases.  Thus, the (also laudable) goal of prevention is impossible at this time.  As esteemed metastasis researcher Dan Welch, PhD, emphasizes:  "To prevent something, you have to know its cause. We have no idea why cancer cells spread, let alone what prompts them to disseminate throughout the body."

There are many more unknowns. No one knows why one person’s breast cancer metastasizes and another’s doesn’t.   We know that certain cancers are more aggressive than others, but all types of cancer metastasize. No one knows why certain patients do or do not respond to particular treatments, even when those treatments are the standard of care for their cancer subtypes.  Often the level of response seems to be based on luck - very good or very bad. There is no data registry for those living with metastatic recurrences. We are absent from statistics. Those who are Stage IV at initial diagnosis are counted.  Those diagnosed at earlier stages that recur are not counted.  We in this group are counted at initial diagnosis, then at death.

The current treatment model for MBC is to try a specific regimen until either it stops being effective or the body stops tolerating it, then move on to the next, and so on, until there are no options left.  There is a public misconception that MBC has become an “easily treated” chronic condition. In truth, the treatments and choices we face are difficult and life-altering.  “Treat/Scan/Repeat” is the Stage IV mantra. We just hope that as time passes new, effective, and more targeted treatments will be developed.

The key, then, is research.  Currently less than 5% of breast cancer research funding goes to metastatic breast cancer, even though an estimated 30% of breast cancer patients will go on to have MBC.  I hope you are moved to contribute directly to MBC research and advocacy: 100% of METAvivor (www.metavivor.org) donations fund grants for MBC research, and the Metastatic Breast Cancer Network (www.mbcn.org) fights for treatments to extend life and advocates for MBC patients.  

             The facts are frightening and uncomfortable to face, but they dictate the dire need for research to prevent, treat, and one day cure metastatic breast cancer.  There can be no cure for breast cancer without solving the puzzle of metastasis.  Awareness, early detection, and prevention behaviors - all important objectives  - do not guarantee survival of this insidious and epidemic disease. The unanswered questions are unacceptable, as are the gross inequities in research funding that continue to delay answers to them at the cost of so many lives.