Pink pro­mo­tion too rosy for re­al­ity

Baltimore Sun Sunday - - NEWS - By Beth Thomp­son

Oc­to­ber, as ev­ery­one knows, is Na­tional Breast Can­cer Aware­ness Month, which is to say that it is the month that ev­ery re­tailer and man­u­fac­turer and sports fran­chise imag­in­able will put forth a pink ver­sion of them­selves that is de­signed to sell things by mak­ing ev­ery­one more “aware” of breast can­cer. And, as ev­ery­one who has paid the slight­est at­ten­tion to the mes­sag­ing of pink Oc­to­bers past knows, aware­ness leads to early de­tec­tion which leads to cure. Right? Not ex­actly. Not al­ways. Some breast can­cers, even if they are dis­cov­ered early, will be­come metastatic and spread to other ar­eas of the body, a Stage IV form of the dis­ease that has a five-year sur­vival rate of just 22 per­cent. The ex­act process that causes some can­cers to metas­ta­size, while oth­ers do not, is not en­tirely clear. But it is a re­al­ity that is of­ten mis­un­der­stood, or just left out, of all we’ve been made so pink­fully “aware.”

It is true that mam­mog­ra­phy screen­ing re­mains the very best tool for early de­tec­tion and that, gen­er­ally speak­ing, breast can­cers de­tected at ear­lier stages are more likely to be cured. This I know first-hand, hav­ing learned it at my first mam­mo­gram, when I was liv­ing with four small chil­dren I knew about and a hid­den, ag­gres­sive can­cer in my breast that I did not. My tu­mor was not the “good kind,” but it was small and con­tained enough to pro­vide me with de­cent odds, sur­vival per­cent­ages that would not earn me an A in school, but maybe a B, pro­vided I com­pleted a year of treat­ment that in­cluded surg­eries, chemo­ther­apy and tar­geted ther­apy. Even then, there were no guar­an­tees. Still, if I hadn’t fol­lowed doc­tor’s or­ders to get that first rec­om­mended mam­mo­gram at 40, things surely would have gone dif­fer­ently, and it is safe to say that early de­tec­tion saved my life.

But, as any sur­vivor will tell you, early de­tec­tion and pink rib­bons do not tell the whole story of breast can­cer sur­vivor­ship; it is more com­pli­cated than the pink part of the story. As a na­tion, we are more aware now, to be sure; the Oc­to­bers of years past have, in large part, been a suc­cess — they have done their job.

There is still work to be done to elim­i­nate the myths that still ex­ist, how­ever: the out­dated be­lief that the sur­geon “get­ting it all” is cu­ra­tive and the more re­cent no­tion that be­ing pos­i­tive is es­sen­tial — the idea that breast can­cer sur­vivors some­how en­joy, rather than en­dure, the 31-day blitz of treat­ments; the con­stant re­minders of their strug­gle; the as­sump­tion that if you are alive, and es­pe­cially if you still have your hair, you must surely have “beaten it.”

The truth is that few of us who have walked this road — our hearts bro­ken and our ears rung by the first c-word, which was “can­cer” — ever got to hear the c-word we longed for: “Cured.” Some of us, by the luck of the draw, got to hear some d-words, like “done” with treat­ment, and maybe even “dis­charged” from our on­col­o­gist’s care; and when this hap­pens, it fits the nar­ra­tive of Na­tional Breast Can­cer Aware­ness Month: Ev­ery­one feels good.

Even then, in the best-case sce­nario, there is no rep­re­sen­ta­tion, on pink stand­mixer dis­plays and on pink-bal­looned car lots, for the losses and fears we live with for­ever, the in­tense, post-trau­matic un­cer­tainty, the ten­ta­tive, fright­ened grat­i­tude of “wait and see.”

And what of our Stage IV sis­ters who, hav­ing also done ev­ery­thing right, hav­ing got­ten the mam­mo­gram, and fol­lowed doc­tor’s or­ders, and hoped in and be­lieved in a cure, now do their level best to live as fully as they pos­si­bly can, de­spite breast can­cer that has spread in their bod­ies — de­spite the fact that there will be no cure? Where are they rep­re­sented in the pink mer­chan­dise, in the cure- based mes­sag­ing?

It’s time to in­clude ev­ery­one, to en­ter a new stage in breast can­cer aware­ness. The CDC es­ti­mates that there are more than 150,000 women liv­ing with metastatic breast can­cer (MBC), or Stage IV breast can­cer, in the U.S. to­day. Three out of four women liv­ing with MBC were ini­tially di­ag­nosed with an ear­lier stage of breast can­cer.

It’s time to make Na­tional Breast Can­cer Aware­ness Month a time for real talk about metastatic breast can­cer, in­creas­ing aware­ness of this stage, what it is, how and why it hap­pens. It’s time to talk about how we can bet­ter sup­port breast can­cer sur­vivors, in a full color spec­trum that goes beyond the pink.

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