I’m not gonna lie, I just drank some bourbon and I’m already wound up with the onslaught of pink when it isn’t even goddamn Labor Day (I am so sorry, childhood and gynecological cancer peeps, it sucks that Pinktober is eating your awareness month). So maybe this will be even more rangy than my usual feminist breast cancer rant, but I’m not even remotely sorry about that.
I am so fucking sick of the pink awareness machine convincing everyone, especially early stagers, that breast cancer is cured when treatment for early stage disease ends. We don’t know how many people who have early stage disease will later develop metastatic disease, but it may be as many as 36% within 12 years of ending treatment. However many it is, it’s TOO FUCKING MANY. And too many women who have early stage disease think they’re cured, when they are still at risk of developing metastatic disease.
Why does this happen? I personally think it’s partly a gender issue, and partly a marketing issue. Let’s delve into the gender issue first.
It’s been a thing since time immemorial to treat women like they’re too fragile or stupid or incompetent or whatever to be handle the truth. We’re delicate flowers, you know, so if you tell us that something scary might happen, we’ll probably have some hysterical (did you know that word has the same root as hysterectomy? Because doctors thought our uteruses made us cray-cray) reaction and never recover. So the solution was, just don’t tell women what’s happening to them.
What. The. Fuck. I mean, WHAT IN THE ACTUAL FUCK, amiright? Except we still do that now. We don’t tell early stagers that their cancer might metastasize because we don’t want to scare them. Why don’t we want to scare them? Is it because we worry their poor little female brains can’t handle it and they’ll start running through the streets screaming and pulling out our hair? For the love of pete, could you all please just stop infantalizing us for five minutes? Women have a right to know what can happen to their bodies. We are not pussies. We’re strong and powerful and we handle horrible shit all the fucking time.
Then there’s the’s the marketing thing. Take a look at practically any marketing for any cancer center, cancer charity, or cancer anything, and you’ll see it’s about selling hope. Hope for life, hope for a cure, hope for never having cancer come back. How can you convince people to hire a doctor or donate money if there’s no hope that they’ll be cured? I mean, if the marketing said “We’ll do our best but 1 in 4 of you will develop terminal breast cancer anyway” they’d never convince anybody to part with their hard-earned dollars, now would they? The truth can be mighty inconvenient, so it’s easier to just focus on hope.
The thing is, though, if women don’t know that their cancer could recur, they don’t know what signs to look out for. They don’t know that unexplained bone pain is something they should mention to their doctors, because it might be bone mets. They don’t know that that headache they just can’t shake should result in an MRI. They don’t know that the tamoxifen they’re on is really fucking important and if they stop taking it, they may be risking their lives. Because nobody told them the risks, because nobody wants them to worry their pretty little heads.
This shit is fucked up. Patients have a right to know that their cancer could come back, that it could become life-threatening. We should respect them enough to trust that they can manage their fears in the face of the facts. We should treat them as adults and tell them the truth.
Don’t hate me because I feel like I’m your point to counter point but damn girl. I’m not sure what bourbon you are drinking and maybe my struggle is just that different but I don’t want any early stager to lose sleep thinking that OH SHIT! IT’S COMING BACK. Not it MIGHT come back but it’s definitely coming back. Hell, it’s hard enough Kay living with the possibility. How can we education anyone in an environment of fear? I say acknowledge the possibility and keep it moving. The same way we acknowledge that when we get in a car, we could be in an accident but that doesn’t stop us from driving. I will never take away an early stagers hope just because my cancer came back. And so if early stagers are being told that maybe their cancer won’t come back, I say bravo. Hope won’t stop cancer from coming back but dread and fear will steal the precious time that any of us have left on this earth. And quite frankly if I were an early stager, witnessing some of the bitter angry attitudes that some metsters have, devoid of any hope or joy, I wouldn’t listen to us anyway. My personal message to early stagers is to live, love and laugh (and drink the damn bourbon from the top shelf) and if this bully comes back on you, you pull up your big girl panties and get on with the business of LIVING with it. You can either live with it or die with it – it’s all a choice you make!
Reba I disagree completely. Just because I know my likelihood of recurrence/metastasis, time is not being stolen from me. Rather, I expect to be treated as a thinking adult by my doctor and to be told all the stats and the TRUTH. After all, that is what I pay for. So I AM acknowledging and moving on, and monitoring.
Oh, and I needn’t “catch” bitterness or anger from metsters–I already have it from being fed up with Pink, from having a false negative 5 weeks prior to DX (my first ever mammogram).
My choice is to get on with living–and to write a blog expressing all of my dissatisfaction with Pink culture–to turn around and put a digital hand of help and support to those DX after me, so they do no feel as alone in a sea of sickly Pink like I did. And I am very happy with my choice.
I am so tired of the assumption that expressing anger and exhaustion with cancer culture makes a person bitter all the time. People can experience a variety of emotions and states–some of the seemingly contradictory—at once. Humans are complex.
Cancer Curmudgeon recently posted…Kitchen Table
Oh, hell, yes! The gender bias — I mean, did they have to choose PINK of all colors, which is freighted with all sorts of gender stereotyping in the first place — and the marketing extravaganza are subjects I’ve written about sooooo many times on my blog, I want to barf.
Don’t get me started on doctors who are not honest with you about potential collateral damage from treatment either. What’s that all about? Grrr.
Kathi recently posted…Breast Cancer Awareness? Let’s Get Real
This was me. I had bone pain and not one medical provider thought to give me an X-ray until I saw an orthopedist. Certainly no one thought my cancer had recurred. I was 42 and it was 4 years after my bout with early stage breast cancer.
Jill Cohen recently posted…Happy 13th metsiversary to me!
Not all patients are told the truth, you are right. My Onco avoids saying anything about “cure” to me but I have heard doctors say “you are cured from THIS cancer.” Well, if it comes back, then that means it was never cured so why tell us we are “cured” at all? They don’t know. The whole system is messed up. I personally would rather know the truth not just so that I am mentally prepared but because I want to be able to make an informed decision about my health (and about my life!).
I have met some “survivors” who have said to me that they are cured and there is no way they will face cancer again because it was caught early. I am not sure where they get this information from. Denial is a form of coping but it can be costly.
Rebecca recently posted…Survivorship: my life illustrated