Time and time again, individuals living with stage IV/metastatic breast cancer tell me they don't like October, all the pink hoopla and the countless pink ribbons that appear everywhere. They feel they do not fit the image so often portrayed. You know the one: the strong, brave and positive-minded warrior in pink. The image which suggests if you just fight hard enough you'll be fine. The unspoken message also seems to be, unintended or not, that metastatic patients have somehow failed in their pink fight.
During the month which is supposed to be all about support, instead many of these women feel alone. They feel isolated. They feel left out; yes, even invisible.
The fact that individuals living with metastatic breast cancer so often feel alone and isolated is heartbreaking; it's also unacceptable.
This needs to change.
No one living with metastatic breast cancer should feel isolated or abandoned, especially by those proclaiming to be their biggest supporters.
Before this can change, we must ask: Why do so many feel this way?
Why is this segment of the breast cancer community so often and so easily brushed aside?
Of course, the diagnosis of a disease -- which will more than likely be terminal -- is isolating enough. However, this is not the only reason for the loneliness, sense of isolation and feelings of abandonment that are very real for many living with a stage IV diagnosis.
Pink ribbon culture, with its often-times skewed representation of a still deadly disease, is also partly to blame.
Without a doubt, pink ribbon culture has been a vehicle for a lot of good. There's no denying it has helped bring breast cancer out of the closet and brought in tons of dollars (though what these dollars are being spent on and who is really profiting is often questionable as well.)
However, it's also true that today there is considerable and mounting discontent, even disdain, for the pink ribbon -- or more specifically for the failures it represents. There are many things wrong with the pink ribbon representation of breast cancer and the list of failures is not getting any shorter.
Perhaps this lack of attention to those living with metastatic breast cancer is the greatest failure of all.
Most of the time pink ribbon culture continues to primarily portray the feel-good stories. The media has certainly perpetuated this, "let's put a happy face on breast cancer," mentality. In and of itself, there's nothing wrong with this.
Who doesn't love a feel-good story?
I like them too. Most of us prefer happy endings.
But the feel-good stories must also be balanced with a dose of reality: the reality that 30 percent of those diagnosed with breast cancer will see their cancers metastasize at some point; the reality that those living with metastatic breast cancer are probably not living the, "hooray pink," lifestyle; the reality that those living with metastatic disease will be in treatment for the long haul and the harshest reality of all: that 40,000 women and men still die from metastatic breast cancer every year in the United States alone.
No matter how much pink you wrap these facts up in, they still don't lie (though they're rarely mentioned during October awareness hype).
Time and time again, pink ribbon culture has failed to paint a complete picture of breast cancer, but perhaps we have all failed. Perhaps we have all been too quiet. Perhaps we have all looked the other way too many times.
Until we all more fully acknowledge, embrace and work to improve and extend the lives of those living with metastatic breast cancer, we will have failed and failed miserably.As Gayle Sulik, author of Pink Ribbon Blues, surmises:
Yes, the metastatic breast cancer community deserves better. We all do.
Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is... a disease process that ignites what is all too often a cycle of medical surveillance and interventions... For too many, it will be the eventual cause of death... They deserve better than this, and so do we.
This October, in fact all year long: Let's remember that breast cancer awareness without mets awareness, isn't awareness at all.