Stage 4 Breast Cancer - A Palatable Pink Cloud of Unawareness

By Contributor: Krista Lawrence

I followed the recent coverage of Shannen Doherty’s Stage IV Metastatic Breast Cancer (MBC) diagnosis. My reaction was uneasy anger, hope crept in, followed and replaced by familiar resignation and disappointment. This was announced on “World Cancer Day”. The purpose for such a day?? I suppose, to raise….awareness? For….Cancer? Okay. I’m aware of this particular insidious, indiscriminate thief. Intimately.

Awareness. A similar unsettledness descends in October. October was designated Breast Cancer Awareness Month in 1985. I know, you’re aware. Every October becomes a sea of pink ribbons, walks, runs and ‘Girls Night Out’ mammogram parties. A steady narrative of hope and one-and-done survivorship pervades. Mission accomplished. We’re aware. More importantly, we’re comforted. With early detection and proper treatment, breast cancer just isn’t the death sentence it once was.

Really?? Stage IV Breast Cancer is unlike many other Stage IV cancers. We don’t out-live it. As long as breast cancer remains in the breast, it is Stage 0, I, II or III and treatable and no one dies.  However, once the cancer spreads, metastasizes beyond the breast to major organs (commonly lungs, liver, brain) and bones, it is Stage IV, and then…Breast Cancer becomes, frankly, a death sentence. An early diagnosis, successfully treated is not always the end of the story. The not-so-happy-ending, the reality, is that roughly 30% of those ‘survivors’ will experience a metastasized recurrence. Who will be impacted and when, is inexplicably, unpredictably random. Breast cancer once declared cured or in remission, can be detected years or merely months following initial treatment for early stage disease. Equally incomprehensibly wild is the fact that of the approximately 155,000 women and men living with MBC, six to ten percent are diagnosed deNovo (from onset; first), often women under 40, the recommended age to begin annual screening.

One medical contributor stated Ms. Doherty’s public sharing of her diagnosis presented a teachable moment. Ah, here we go…say it, I thought. The moment was again used to provide a tired reminder of the thread bare awareness of early detection through mammogram screening and access to effective treatments. Predictable. Infuriating. Hopes for a truly meaningful teachable moment evaporated. Instead, another missed opportunity was wrapped up and tucked away in a palatable pink cloud of unawareness.

I realize it is unrealistic to expect headlines and sound-bites to offer depth and breadth. The actress’s news was declared ‘Devastating’ but neglected elaboration. One headline shouted ‘She is “Dying” from Stage IV Breast Cancer.’ “Dying”, in quotation marks?? Another reported Ms. Doherty’s attorney submitted court documents explaining she is dying from Stage IV terminal cancer. Opposing counsel empathized and ignorantly offered wishes for her full recovery. I get that as a society, we don’t routinely face, let alone accept, our mortality. I even understand, to a point, the medical community’s goal to establish hopefulness for a desired or expected treatment outcome. But come on!  When the spotlight shines on a woman with Stage IV Metastatic Breast Cancer, we are somehow unwilling to enlighten ourselves and each other with the truth that, ahem….There’s no cure. No full recovery. There’s no Stage V. We die. OF COURSE IT’S DEVASTATING!!

Instead we embrace the spin that this life altering diagnosis really needn’t be feared. There are, after all, new and exciting treatments happening every day. Try them! These treatments can now extend the life expectancy. Nothing to worry about. We’re aware. Do our part and if we encounter this detour, our back is covered. Grueling treatment becomes a blip on our timeline.

Here’s the Awareness in 2020:

• New treatments are often only effective with small percentages of certain tumor characteristics or subtypes, i.e., ER/HR+, Her2-, Triple Negative, Her2+, etc. New therapies are restricted to specific types and even then, individual results are unpredictable and irregular.

• Even if a treatment is effective, it’s still only for a finite time. The median survival rate remains 33 months. Sure, I suppose no one is actually lying when stating treatment enables patients to live for years. It can. Sometimes. For some. Sure, there are exceptional outliers who are lucky (yes luck, just random chance luck) to have longer success without progression. But we are rare and a tiny percentage.

• ​There is a balance we strive to achieve from the moment of diagnosis throughout continued comprehension that life is now dependent upon active treatment. Widely touted and advertised advancements in therapies do not come without a cost. The financial, emotional and physical upheaval is devastating and intense. Side effects are vast and varied, frequently debilitating and life altering. The challenges of maintaining mental wellness while living with a terminal illness have consequences. The financial impact is often ruinous but also most easily imagined as others identify through personal experiences with insurance coverage or lack of. Every day, every decision requires weighing the quality of life against longevity. Evaluating this life tethered to treatment for survival.

• ​Effective treatments that exist today eventually are exhausted. There comes a day, sometimes quickly, sometimes slowly, when there is nothing left to offer.  At this point, if not long before due to the myriad of issues above, the only options are comfort measures to minimize our pain and suffering while we succumb to the relentless ravages of this final stage.

​​Yes, the public sharing of a diagnosis with which I have lived for five and a half years fanned a flame of indignation, a sense of ‘No Shit Sherlock’. MBC is reality for so many of us. This isn’t new. But that’s where the hope slipped in. MBC may strike indiscriminately, but with another celebrity, there is a captive audience. There has been progress. The fiercest Advocates are many of us living and dying with this disease. Will this finally push it out of the shadows? Will the incomprehensible fact that less than seven percent of all breast cancer awareness fundraising dollars are allocated to the deadliest stage cause outrage? Stage IV is the only stage of Breast Cancer that removes the possibility of a normal life span for every single body it invades. Metastasis is responsible for 98% of all breast cancer deaths. It is terminal. The death rate of 40,000 women and men annually due to MBC hasn’t changed in 35 years. Yes, Breast Cancer without a cure.
Here’s the teachable moment: Funding is required to generate more research to identify and prevent progression, develop more treatments and *gasp* create a cure. Stage IV Metastatic Breast Cancer. A death sentence still.

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About Krista
Krista Lawrence is a regular contributor to the podcast Lucia@Night. She is a writer, mom of two, and fierce advocate and individual living with Stage 4 Metastatic Breast Cancer.