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April 29, 2013 6:01 AM   Subscribe


 


Excellent article on the limitations of screening tests in general (the arguments against aggressive screening for breast cancer apply not just to other cancer tests, but to medical tests in general, including imaging studies and drug tests). I particularly liked the way the author described her evolving views on the topic; her personal experience gives her a powerful voice.

One good thing about all this is that my daughter (whose favorite color is pink) has a mindboggling array of pink merchandise to choose from.
posted by TedW at 6:40 AM on April 29, 2013


Man, I am so torn about the way this culture addresses breast cancer.

On the one side - I have my grandma Loretta. The only clear memory I have involving Grandma Loretta was one afternoon when I was about four, and Dad came home from work early, looking really upset, and told my mother that she had just died from breast cancer. I'd been sitting in the kitchen coloring a picture, and got freaked out when Mom started crying. I have only the vaguest image of Grandma Loretta herself. Apparently Loretta put off consulting a doctor to the last minute because she thought her breast pain was from running out to hang wet clothes on the clothesline in her bathrobe.

On the other hand - the early-screening-stuff they drill into you just made me freakin' nuts. I've made the "I've felt a lump in my breast" call to my doctor three times - the first when I was 26 - because I felt something and was so totally freaked out. I was 30 when I had my second mammogram. In all cases, though, the sonogram I also had told the truth - that they were all benign cysts that would go away in a month or so. Finally my doctor had to sit me down and tell me to cool it - I'm prone to getting a lot of cysts, she pointed out, so "let's change the early-screening thing for you - next time you find a lump, wait a month and see if it goes away first. THEN call me." I've had two more "lumps" that thus disappeared since then.

But there is just still so much freakin' pink ribbon ticky-tacky out there trying to make us feel like we're doing something about it - and a couple of really giggly tee-hee Facebook memes that have sprung up around it (usually something like, you post the color of your bra as your facebook status "but don't explain what it is and everyone will be all curious and wanna know but don't tell 'em, tee-hee", and this mystery is ostensibly supposed to "raise awareness").

What really will make a difference is for every woman to have access to regular wellness care, and for every woman to feel like she has the right to talk to her freakin' doctor. My doctor gave me a personalized approach to wellness care and screening - but only after the "early screening saves lives" stuff had scared the bejesus out of me. Grandma Loretta didn't want to talk at all. It isn't a pink ribbon that's keeping me healthy - it is having a good enough relationship with my doctor for the both of us to know what makes me uniquely tick, and how to take care of it and what to watch out for and when.

That is what will stop breast cancer - not pink toasters.
posted by EmpressCallipygos at 6:41 AM on April 29, 2013 [41 favorites]


The Ehrenreich essay (and book) was one of the most stunning descriptions of Breast Cancer and all its ins and outs that I have ever read.
posted by getawaysticks at 6:42 AM on April 29, 2013 [2 favorites]


All this fucking pinkwashing. It's like a way to say "OH WE CARE ABOUT WOMEN" without actually having to, you know, CARE about women. Just SAVE THE TITS and the hell with all of the environmental factors that raise women's risks or the actual fucking healthcare that will help them with all kinds of problems. But remember, ladies, you have to be AWARE of breast cancer! YOU'RE RESPONSIBLE for avoiding breast cancer just like YOU'RE RESPONSIBLE for avoiding rape.

*seething rage* I get agitated about this. I'm at an elevated risk for breast cancer (among other things) because I've had uterine and ovarian cancer so what the fuck let's go for the chick-cancer trifecta. If god forbid I ever do develop breast cancer, rule number 1 for anyone around me who wants to be supportive is NO PINK SHIT WITHOUT CHECKING WITH ME. Rule number 2 is "fuck Komen".
posted by rmd1023 at 6:46 AM on April 29, 2013 [40 favorites]


this mystery is ostensibly supposed to "raise awareness"

HEY, YOU KNOW WHAT WILL RAISE AWARENESS? FUCKING TALKING ABOUT IT AND NOT JUST BEING OBTUSE AND SNIGGERINGLY IMMATURE WITH 'MEMES' THAT FEEL LIKE JUNIOR HIGH CRAP.
posted by rmd1023 at 6:47 AM on April 29, 2013 [10 favorites]


Yeah, I'm 51, and I have a (wonderful in most respects) ob-gyn who still embraces the annual mammogram crap, and so I do them. Not sure why, but that "physician disapproval" look is probably a factor. I don't mind mammograms the way some women do, but it strikes me as a pointless waste of insurance $$. At every annual check-up, he asks if I do self-exams, so I lie, of course.

And every spring, or whenever, it seems like my entire town turns the color of Pepto-Bismol, which comes off much more as an activity designed to give that contingent of people who enjoy organizing and planning and holding social/charity events something to do when those funds could be used to provide actual health care for local people in need. My (probably inaccurate) perception of the whole Pink Culture is that it's heavily marketed at women who perform gender in very specific, super-"feminized" ways, which means it's not the sort of thing I'd ever participate in even if it did lots of good.

On the rare occasions when I worry about getting breast cancer, one of my worries is that it would force me into the clutches of the Pink Mafia.
posted by FelliniBlank at 6:53 AM on April 29, 2013 [5 favorites]


I mean, what would be great is if we get all of those ladies who like the pink ribbons and get them to testify in Texas and Nebraska and Arkansas and every other state in this country that is shutting down women’s healthcare clinics.
posted by roomthreeseventeen at 6:53 AM on April 29, 2013 [7 favorites]


And every spring, or whenever, it seems like my entire town turns the color of Pepto-Bismol, which comes off much more as an activity designed to give that contingent of people who enjoy organizing and planning and holding social/charity events something to do when those funds could be used to provide actual health care for local people in need.

The most irritating thing about this is that it seems like, seeing the success of breast cancer events, every other disease is trying it. The ads on the Metro are now basically a constant PSA about events to raise money for one disease or another with heavy emphasis on how people are out there "WALKING TO SAVE LIVES" which if of course nonsense. The money is saving lives, the walking exists to mostly for the collective effervescence. That's fine, but I wish we'd stop confusing doing a 5K with doing medical research.

Hell, it doesn't even need to be walking anymore; there seemed to be some kind of breast cancer fundraising pub crawl going on in DC on Saturday afternoon. It really raised my awareness of douchebag bros in pink Tommy Hilfiger polos. This being DC, though, I was already pretty aware.
posted by Bulgaroktonos at 7:09 AM on April 29, 2013 [8 favorites]


Somewhere between too subtle and ALL CAPS there is an awareness sweet spot.
posted by Drinky Die at 7:11 AM on April 29, 2013


That's another thing - "awareness." That's such a dippy goal. What exactly does "awareness" achieve independent of action?

You don't want people to just be cognizant of the existance of breast cancer, you want them to fund research about it, and to lobby Congress to also fund it. If the pink-tickytacky movement devoted that energy to lobbying Congress instead a hell of a lot more would get done - just trying to make people "aware" is too passive. FUCKING DEMAND WHAT YOU WANT, don't just "raise awareness" and hope that takes care of it.
posted by EmpressCallipygos at 7:16 AM on April 29, 2013 [6 favorites]


One of the many anti-social impulses that I have to squelch is responding to the awareness programs with "Will wearing this ribbon/running this two and a half miles/changing my facebook icon/frosting this cupcake in pink/etc. bring my mother back?"
posted by Karmakaze at 7:36 AM on April 29, 2013 [15 favorites]


I am in the middle of this whole process, as a husband, and I have the additional perspective of my aunt, who's a cancer research administrator (and former NIH program reviewer). She has been able to sort of lift us up above a lot of this noise, pointing out sources of information and advising on credentials without much spin.

I see the whole PINKness as a sign of acceptance of a medical condition that used to be unspoken and ignored -- and I think that's a good thing. It brings some comfort to women who are considering pretty radical-to-me treatment on a part of their body that's closely tied to their identity, and who are tired of getting undressed and being pinched by strangers' cold hands.

Do I wish some of that cash went elsewhere? Sure: a BRAC test that didn't take three weeks would be sweet (though that's a bigger issue than just funding). Do I wish more people had the embarrassment of riches that we have, living between the great hospitals of Providence and Boston? Damn betcha: we got second and third opinions from really good doctors, where people in much of America drive a long way just for a county clinic.

So I see the writer's perspective, but I don't want the baby thrown out with the bathwater.
posted by wenestvedt at 7:37 AM on April 29, 2013 [4 favorites]


"Will wearing this ribbon/running this two and a half miles/changing my facebook icon/frosting this cupcake in pink/etc. bring my mother back?"

Of course the answer to this is no. But I ran a local race in NYC yesterday that benefits a lung cancer foundation. Plenty of people wore the names of relatives they had lost on their shirts or race bibs. And by doing that, they are remembering their loved ones, and other people, complete strangers, are knowing their names. Maybe that doesn't mean anything, but I am a firm believer that you are never gone until you are forgotten.
posted by roomthreeseventeen at 7:42 AM on April 29, 2013 [6 favorites]


Felliniblank, my doctor gave me they look and a lecture when I told her I wasn't getting a mammogram because of the new guidelines (I'm 44 with no major risk factors.) It totally colored her perception of me I think. I'd lost nearly 60 lbs and she did not care. She just kept harping on me to get a mammogram.
posted by vespabelle at 7:45 AM on April 29, 2013


I mean, was there a time recently when breast cancer was something you Couldn't Talk About In Public?

Because that's the vibe I get from a lot of this Awareness stuff, reading between the lines — that there's something laudably brave in just acknowledging that breast cancer exists. Which isn't true now, but I'm wondering if it used to be when all this got started.

In a way it reminds me of the continuing existence of Pride events in super-liberal towns where the original purpose — demonstrating a collective "fuck you, we're not ashamed of who we are" — doesn't really matter anymore. At a certain point it stops being an actual gay pride rally and starts being, you know, that party that we have every year even though there isn't really the need to change people's attitudes anymore but whatever some of us are having fun so we're gonna keep doing it.
posted by Now there are two. There are two _______. at 7:46 AM on April 29, 2013 [1 favorite]


On the rare occasions when I worry about getting breast cancer, one of my worries is that it would force me into the clutches of the Pink Mafia.

and

If god forbid I ever do develop breast cancer, rule number 1 for anyone around me who wants to be supportive is NO PINK SHIT WITHOUT CHECKING WITH ME. Rule number 2 is "fuck Komen".

That aspect does not seem to be required. My partner has gone through breast cancer surgery and treatment and never had to deal with any aspect of any "pink mafia" or anything Komen-related. Nor does she own any pink clothing or accessories, or felt compelled to begin wearing them now, I'm happy to say. (She's more a black-and-gray clothing person.)

But maybe this experience in the Northeast (a small academic city and NYC) is different from other parts of the country. I hope not.
posted by aught at 7:47 AM on April 29, 2013


All I know is that my best friend, who is barely in her mid-30s and has already survived a crazy-weird cancer so completely out there that entire TEAMS of doctors at Cleveland Clinic met up to shrug and go "WTF I can't even..." at each other... all I know is that every time we see a bunch of pink crap we just want to stab the living shit out of whatever or whoever is carting it around.

She's lucky to be alive and she's completely overlooked because bizarrosarcoma and getting chunks of your leg chopped out isn't sexay.

She's going for constant followup screenings, expensive as hell followups, actually, and all anyone cares about is boooooobies. Boobies boobs boobs pink pink pinkety pink.

Our other similarly-situated friend just survived aggressive cervical cancer. But but but BOOBIES. It is tiresome.

I wish we could cut it the hell out with all the Komen-y "awareness" shit and get a real, functioning First World Country amount of healthcare coverage for everyone. How about that? Quick, someone make a new pink nail polish to fund it.
posted by bitter-girl.com at 7:48 AM on April 29, 2013 [12 favorites]


Wenestvedt and roomthreeseventeen: In all honesty, yes, I do know there is a place for the commemorative events; and I do accept that there are women who need to be educated and made more comfortable with taking an active part in their own health rather than keeping hush-hush about it.

But I think the Annual Campaign Of The Pink sort of keeps it clandestine - it's presented itself as a sort of euphemism, where you say "pink ribbon" or just "pink" rather than coming out and saying "breast cancer." It's a way to keep things hush-hush.

And what really has me angry, though, is that it's also a way for companies to sell extra product - "hey, make it pink and we can market it as a breast cancer thing, that'll move a few extra million. We'll just cut a couple-grand check to Susan Komen, write it off in the taxes." The companies don't actually care, they're exploiting your wife's illness to sell some extra shit.
posted by EmpressCallipygos at 7:49 AM on April 29, 2013 [5 favorites]


More than 50% of these fundraisers say they're raising money "for breast cancer." Not breast cancer awareness or prevention or fighting breast cancer -- FOR breast cancer. I know what they mean, but it strikes me as moderately hilarious every single time -- and I think is a signal this is more about reflexive in-group copycatting than thoughtful fundraising or awareness. Maye another 25% are raising money "for breast cancer awareness" and I'm not quite sure if they want sentient cancer or just for people to know it exists.

With the pushy ones who won't leave you alone, they say, "But we're raising money for breast cancer!" and I say, "I'm sorry, I'm against breast cancer. I think it's bad thing." And scurry out of their clutches while they try to figure out what just happened.
posted by Eyebrows McGee at 7:49 AM on April 29, 2013 [8 favorites]


I just turned 36 and I had my first mammogram a couple months ago. It was recommended by my doctor because my mother and grandmother both had LCIS, and both were discovered by mammos.

Five hours after my screening mammogram they called me back to schedule a diagnostic mammogram. Meaning they saw something and wanted to get a better look. That's all they said.

Thank god that I used to work in the breast cancer clinic at one of the world's best cancer hospitals. Because of that I knew that young breasts are denser and that it would likely turn out to be nothing. They said nothing of the sort when they called. I can only imagine the kind of freakout I would have had if I didn't have my previous knowledge. And I was still slightly freaked.

Anyway it turned out to be calficications. And although I suppose it's nice that I have a baseline mammo to compare to in a few years, I feel like the whole experience was unnecessary.

(Also everyone talks about how physically uncomfortable they are but nobody has EVER mentioned how much groping is involved. I didn't find it to be painful, but I told the technician that we were totally going steady now.)
posted by elsietheeel at 7:50 AM on April 29, 2013 [2 favorites]


I mean, was there a time recently when breast cancer was something you Couldn't Talk About In Public?

Because that's the vibe I get from a lot of this Awareness stuff, reading between the lines — that there's something laudably brave in just acknowledging that breast cancer exists. Which isn't true now, but I'm wondering if it used to be when all this got started.


I feel like there must have been, because it's certainly how it gets treated. My grandmother had breast cancer, and definitely did not treat it that way,* but she was never one to stand on ceremony.

*The "pass me my falsie" stage of our relationship was a little too open when I was 12
posted by Bulgaroktonos at 7:52 AM on April 29, 2013 [2 favorites]


wenestvedt: Yikes. Good luck to her and to both of you.

aught: That aspect does not seem to be required.

Indeed. I just fear that if I did end up with breast cancer there would be an outpouring of PINK from various well-meaning relatives. (My friends are the sort of people who sent me flowers in the hospital after a hysterectomy that said "BEST WISHES ON YOUR NEUTERING", so I think they get me and my grumpy style.)

One of the problems with this kind of heavy advertising and pink-driven stuff is that it's almost impossible to criticize it at all or push back without coming across as "WHY DO YOU HATE WOMEN AND TITS?" Because you've got people who mean well - often people who are feeling powerless because someone they know has breast cancer or they themselves are afraid of it - and so they want to feel like they're doing *something*, and buying the pink sneakers instead of the white ones is a way to feel like you're *doing* something. And so you want to say "this is not an efficient use of time/money/attention" and they hear "YOU'RE DOING THE WRONG THING".
posted by rmd1023 at 7:54 AM on April 29, 2013 [1 favorite]


(Also everyone talks about how physically uncomfortable they are but nobody has EVER mentioned how much groping is involved. I didn't find it to be painful, but I told the technician that we were totally going steady now.)

*snerk* I've always been a bit petite up front. I also have a habit of cracking jokes during medical exams to break the tension.

When the technician came into the room for my first mammogram, I told her that I was going to be kind of a challenge. She looked at me, puzzled. "Why?"

"I'm kind of small."

She looked me in the eye, then looked down at my chest. "Let me see," she said, nodding at me to open my gown. I did. When she looked at my teeny breasts, her face actually fell and she said "uh-oh...."

There was a good deal of groping that time, simply because she was having a hard time getting the machine to get a purchase on me. I think the computer threw out a couple scans because it thought that it had only gotten a partial image ("there's not enough there, you must have only gotten half").
posted by EmpressCallipygos at 7:56 AM on April 29, 2013


This is as good a reason as any to say "Fuck Komen".
posted by pxe2000 at 8:05 AM on April 29, 2013 [3 favorites]


I think to some degree awareness was a decent starting goal, at one point in time. When things weren't discussed in the open, people didn't always consider that other people might have had the same experiences, one person's health scare didn't give others' the motivation to go get checked, and so on. I'm from a rural area and I do get the sense that these things weren't always spoken of, and many more people died than was necessary. I also have a mother who was diagnosed with breast cancer at 47; she's fine now, but went through chemo + mastectomy and I saw the physical toll it took on her. She's one of the people who buys the pink stuff, walks in the races, but also helps out the support groups. I feel like she gets to make that choice herself as to whether the pink works for her. I don't personally buy anything with it.

Regarding the mammograms. I'm currently being a bad patient, as my OB/GYN has recommended that I go get one now. I'm 35, but do have my mother's history as a factor, but no other family members with breast cancer. As a (social) science-minded thinker, I just read the newer recommendations and don't see much of a point in getting this done. So I think I'm going to ignore it, or at least read up on more recommendations before automatically getting it done.
posted by bizzyb at 8:10 AM on April 29, 2013


don't see much of a point in getting this done

If your mother has a history of breast cancer AND your doctor recommends a screening, I would think ignoring all of that information is a bad idea.
posted by roomthreeseventeen at 8:15 AM on April 29, 2013


I think to some degree awareness was a decent starting goal, at one point in time.

And yet, for many women, their own story is, to them, the first time they have thought about cancer or imagined not having their breasts, and so they are pretty much Patient Zero in their own mind. (You know, like teen-agers thinking they just discovered...well, everything.)

That is, just because lots of other people are comfortable discussing boobs, any particular patient may still need time before they are comfortable talking taking off their shirt for multiple doctors & nurses they don't know, or talking about their body. Some may scoff at body modesty as puritanism, but not every person comes from the same place.

(Not saying you do so, bizzyb, just using your remark as a springboard.)
posted by wenestvedt at 8:20 AM on April 29, 2013 [2 favorites]


I think part of the problem is terminology. The article lays out four major types of breast cancers. Two of them (if I'm understanding correctly) aren't really a big deal, one is kind of dangerous, and one really bad. My impression is that anytime anyone hears the word "cancer" it gets associated with the holy-shit-I-only-have-months-to-live kind of cancer even though most aren't that.

My mom had one of the not very dangerous varieties about fifteen years ago and it was caught as early as could have been. She still freaked out and was really worried. She had a lumpectomy and that was the end of it. I wouldn't be surprised it was something she could have left alone for years and it still wouldn't have been a big deal and/or have never been life threatening.

More recently, she had something more aggressive and that has been more of a trial but at least now I don't feel weird thinking of my mother as a breast cancer survivor.

All these awareness campaigns can trot out these big numbers of how many women have breast cancer and most people picture pale sickly faces with bald heads from the chemo when that isn't what most women experiences are like. I bet it also causes a lot of women to pursue far more aggressive treatment than is really warranted because they hear "cancer" and think they're going to die if they don't annihilate it right the fuck now.
posted by VTX at 8:24 AM on April 29, 2013 [1 favorite]


I'm all for raising awareness, I'm all for funding research and fighting disease. Breast cancer is common and terrible. But you know what else is really common, preventable, curable, kills far too many people yet no one gives two shits about and therefore receives a tiny fraction of the research funding of breast cancer?

Lots of things.
posted by Slarty Bartfast at 8:24 AM on April 29, 2013 [5 favorites]


If your mother has a history of breast cancer AND your doctor recommends a screening, I would think ignoring all of that information is a bad idea.

That's the thing, though -- do we do what our doctor says, because they are making those judgements based on the no-so-recent guidelines, and those guidelines might not always fit the science of prediction. Am I even more likely to have consequences of a false positive because of family history?

It's not a question of doing it or never doing it, but if 35 fits the best age. Some of the guidelines I've seen independently seem to suggest 37 at the soonest (10 years out from my mom's age at her time of cancer). I'm fairly sure my doctor's recommendation was based on an older chart having an incorrect age of my mother's age of diagnosis, which I did later try to correct, but it doesn't seem to have stuck. Others say starting at the age of 30. I'm just planning on digging some more and reading the original literature, along with engaging my doctor in a conversation about this over the next year.
posted by bizzyb at 8:29 AM on April 29, 2013


These two paragraphs are amazing, forgive me for quoting at length:
It wasn’t so long ago that women fought to keep their breasts after a cancer diagnosis, lobbying surgeons to forgo radical mastectomies for equally effective lumpectomies with radiation. Why had that flipped? I pondered the question as I browsed through the “Stories of Hope” on the American Cancer Society’s Web site. I came across an appealing woman in a pink T-shirt, smiling as she held out a white-frosted cupcake bedecked with a pink candle. In a first-person narrative, she said that she began screening in her mid-30s because she had fibrocystic breast disease. At 41, she was given a diagnosis of D.C.I.S., which was treated with lumpectomy and radiation. “I felt lucky to have caught it early,” she said, though she added that she was emotionally devastated by the experience. She continued screenings and went on to have multiple operations to remove benign cysts. By the time she learned she had breast cancer again, she was looking at a fifth operation on her breasts. So she opted to have both of them removed, a decision she said she believed to be both logical and proactive.

I found myself thinking of an alternative way to describe what happened. Fibrocystic breast disease does not predict cancer, though distinguishing between benign and malignant tumors can be difficult, increasing the potential for unnecessary biopsies. Starting screening in her 30s exposed this woman to years of excess medical radiation — one of the few known causes of breast cancer. Her D.C.I.S., a condition detected almost exclusively through mammography, quite likely never would become life-threatening, yet it transformed her into a cancer survivor, subjecting her to surgery and weeks of even more radiation. By the time of her second diagnosis, she was so distraught that she amputated both of her breasts to restore a sense of control.
Man, that really brings it home. Early screening and medical intervention basically tortured this poor woman for decades until she decided to have her breasts cut off. Looking at it from that perspective, it's horrifying.
posted by gkhan at 8:34 AM on April 29, 2013 [2 favorites]


Back in the early 2000's I began experiencing excruciating breast pain (due, it later turned out, to my birth control pill). My doctor sent me for a mammogram. It was an incredibly painful and humiliating experience. At the end of it I was told the results were inconclusive as my breasts were still too dense to see anything in, and I would need a sonogram that would allow the doctor to see better. I was irate. So a better method existed all along? Why do a mammogram in the first place at all? When I turned forty my OB-GYN tried to get me to start getting mammograms. I refused. It made no sense to me to expose myself to the pain and radiation if there was a better method, like a sonogram. And if there was no better method available, what would the impetus be for developing one, if everyone just went along ahead unquestioningly and had a horrible mammogram?

My doctor reported my refusal to my insurance company and I received a strongly worded "suggestion" that I'd better get with the program and go get a mammogram or face being dropped by the insurer. I ignored them. My friends and family were pressuring me as well. They all thought I was crazy to ignore my doctor and my insurance company. But my gut told me that the whole mammogram thing didn't add up. There was something stinky rotten about it. I felt like I was being coerced and I didn't like it one bit.

I am SO glad I stuck to my guns and listened to my good common sense!!! It was a bit scary to balk the system but it was worth it!
posted by WalkerWestridge at 8:34 AM on April 29, 2013 [2 favorites]


It also doesn't help that the figurehead of this vaguely-exploitative pink bullshit is Susan G. Komen, pretty much the worst organization you could imagine if you wanted to funnel actual money into actual research that would save actual lives. But, no, let's just put pink stripes on NFL player's socks, and put up lots of billboards. I'm sure that'll solve the problem.
posted by Mayor West at 8:38 AM on April 29, 2013 [1 favorite]


A couple of years after my Mom went through her breast cancer treatment, which included a double mastectomy, radiation, and chemo, I heard her talking on the phone to a friend of hers, who was going through a similar situation. She said "No, I didn't get any of that pink stuff. We were too broke from all the hospital visits and wigs."
posted by Cookiebastard at 8:44 AM on April 29, 2013 [4 favorites]


Now there are two. There are two _______.: "In a way it reminds me of the continuing existence of Pride events in super-liberal towns where the original purpose — demonstrating a collective "fuck you, we're not ashamed of who we are" — doesn't really matter anymore. At a certain point it stops being an actual gay pride rally and starts being, you know, that party that we have every year even though there isn't really the need to change people's attitudes anymore but whatever some of us are having fun so we're gonna keep doing it."

Small text, because this is getting derail-y.

I could write pages and pages on this subject, and your observation is certainly correct on a number of levels. 2/3 of the DC City Council march in our pride parade, so it's kind of hard for us to call ourselves an oppressed minority in our locale.

However, the attendees of these events tend to come from a fairly wide geographical net that includes lots of tiny towns and deeply conservative regions. After tip-toeing out of the closet, my best friend dragged me to DC pride, and it was just a completely transformative and life-altering experience to meet thousands of people who were Just Like Me, all while being surrounded by thousands more politicians, parents, clergy, police officers, and normal folks who had just showed up to show their support.

There was nothing particularly oppressive about my upbringing, but until my early 20s, I'd never lived in a town that had more than a few thousand people in it. The gays there were always an unspoken and invisible minority (and I couldn't even remotely relate to the few guys who were out, or the ones on TV). I can't even imagine how much less angst I would have had in my teenage years if my best friend had dragged me out to a pride event sooner...

Until gay kids stop killing themselves because they're ashamed of their identity, Pride events serve an important function, even if their host cities are friendly and progressive places. Odds are, there are quite a few towns within driving distance that are tiny, sheltered, and conservative...

Circling back to the thread at hand, there are a lot of places in the US that are completely backward about women's health. I don't live in one of them, but I have little doubt that they exist. Like many others here, I find pinkwashing to be infuriating, and suspect that a great deal of it is redundant (seriously, holding these events in DC is like preaching to the choir). However, I find it entirely plausible that there are regions of the country that could still stand to benefit from some more breast cancer advocacy. To be sure, breast cancer advocacy has had diminishing returns for many years now, but I'd like to see some hard data from around the country before declaring it to be completely redundant and unnecessary.

The pinkwashing needs to stop, but we might want to think twice before throwing in the towel on advocacy and awareness.

posted by schmod at 9:02 AM on April 29, 2013 [3 favorites]


Also, let's be perfectly clear: Early and frequent screening is the cornerstone upon which Komen is built. All of the pink stuff was built solely to support this one basic tenet.

They've ignored any science that contradicts that principle.

Generally speaking, most of the other cancer charities have (conservatively) followed scientific consensus on screening and treatment.

Disclaimer: My partner works for one of those other cancer charities. Komen is....not terribly well-liked in that community, although their fundraising juggernaut does pump a respectable amount of money into research.
posted by schmod at 9:11 AM on April 29, 2013



I mean, was there a time recently when breast cancer was something you Couldn't Talk About In Public?

Because that's the vibe I get from a lot of this Awareness stuff, reading between the lines — that there's something laudably brave in just acknowledging that breast cancer exists. Which isn't true now, but I'm wondering if it used to be when all this got started.

I feel like there must have been, because it's certainly how it gets treated. My grandmother had breast cancer, and definitely did not treat it that way,* but she was never one to stand on ceremony.


I think it was when Lady Bird Johnson brought her diagnosis public.
posted by asockpuppet at 9:27 AM on April 29, 2013


Shoot, no. It was Betty Ford. I knew it was a first lady.
posted by asockpuppet at 9:28 AM on April 29, 2013


that there's something laudably brave in just acknowledging that breast cancer exists. Which isn't true now, but I'm wondering if it used to be when all this got started.


I'm long enough in the tooth to think back to when I entered the workforce as a young lass, and to recall that back then, it would have been highly unusual for a woman co-worker to have the freedom to speak openly (or at all, really) about her breast cancer, and to expect to receive support from colleagues. Public discussion of *any* of the difficult realities of women's bodies just wasn't done so much back then, compared to now. My sense is that women suffered more in silence and isolation.

I'm not a fan of the mercantile think-pink movement, but at least we are talking about cancer much more openly now.
posted by nacho fries at 9:55 AM on April 29, 2013 [2 favorites]


The last time I visited a gynecologist, it was a new-to-me doctor. When I was filling out the registration forms, the receptionist behind the counter said, "He's going to want you to get a mammogram. Here's the information on where you can do that."

Sure enough, after my (annual preventative nothing-actually-wrong) exam, the doctor wrote a prescription for a mammogram. He didn't give any reason for doing so, just that I "need to get one."

I'm 36. I have no family history of breast cancer. I have little family history of any kind of cancer, and the few relatives who have died of cancer have died of not-usually-genetically-linked cancers, like lung cancer.

Since I was moving shortly and not planning on visiting this particular doctor again, I just tossed the Rx and didn't argue with him about it. But if the receptionist could accurately predict that the doctor would prescribe a mammogram on a 36-year-old patient with no family history of cancer coming in with no active complaints, then I rather assume the doctor's not making that recommendation based on any actual risk factors, and that appalls me.

Pink Ribbons, Inc., a documentary based on the Samantha King book, is available for streaming on Netflix and is absolutely worth watching.
posted by jaguar at 10:08 AM on April 29, 2013 [2 favorites]


And what really has me angry, though, is that it's also a way for companies to sell extra product - "hey, make it pink and we can market it as a breast cancer thing, that'll move a few extra million.

Not just limited to breastcancer. One of the more aggressively marketing charities here in the Netherlands is KiKa, the Child Cancer foundation. A few years ago, at the local hospital my wife was in even, I ran across the KiKa bracelets the canteen had on sale. Twelve euro fifty for some plastic tat of which one whole euro would go to the charity...
posted by MartinWisse at 10:15 AM on April 29, 2013


I felt this article. I had a baseline mammogram at 40 and there was something unusual about it, so I went back in six months. Turned out that the "problem" was calcification, but by the time we'd found that out, I'd already had to undergo a needle biopsy. (Which was terrifying for someone who has a phobia of needles.)

Between the second mammogram and the biopsy, I spent two months living in utter terror of a cancer diagnosis. It was not a feel-good experience. I can remember when folks didn't talk about cancer at all, and this is better, but there's definitely some recalibration needed on the breast cancer screening and diagnosis front. (And that's not even getting into the PINK stuff.)
posted by immlass at 10:50 AM on April 29, 2013


I mean, was there a time recently when breast cancer was something you Couldn't Talk About In Public?


Yes. My mother, who is in her early sixties, has walked in those 3 Day Walks for breast cancer, and she sees it as a new kind of awareness and openness. One of her tent mates was a German woman who could not believe the difference over the last couple of decades. I am in my twenties, and 5Ks and pink ribbons have pretty much been a part of my cultural landscape since forever, but I know that it means a lot to my mother to have been a part of those walks and races.

As someone with close family members who also have really weird types of cancer, like cancer of body parts I didn't know existed, the wave of pink phenomenon is kind of exhausting. I don't think they'd prefer a Miscellaneous Sarcoma Day as a catch all, and while there are some pan-cancer support runs and walks, I don't think those tap into charity bequests or sponsors as readily as breast cancer. Maybe Wed MD could sponsor those races: they're basically the One Degree from Cancer site anyway...
posted by jetlagaddict at 10:59 AM on April 29, 2013


It wasn't all that long ago that people didn't speak openly about cancer, and certainly not about breast cancer. I'm only in my 30s and I remember it being that way. My mother had breast cancer about 20 years ago. I was just barely a teenager. Mom was pretty open about it all and that seemed to startle people. One person viciously scolded my mother for telling her own parents about it! So I imagine for women of my mother's generation that it must feel empowering to talk about it openly ... and Komen Foundation et al have certainly benefited from that "empowerment." In the early 90s, my mother's oncologist never even told her what kind of breast cancer she had - and my mother was an educated healthcare professional herself living in an urban center. So it's not just prudish bumpkins who maintained the silence.

I've been thinking about this article a lot this weekend. In my teens, I just assumed that I would eventually have breast cancer and have my breasts hacked off. (Ugly language, I know, but having seen my mother's breasts one day and the results of bilateral mastectomy the next, this is how I feel about it.) In my 20s, during the pink explosion, I figured, well, even if I do get breast cancer, obviously with all this fundraising and awareness treatment options will have improved and the scorched earth strategy won't be necessary. Maybe a lumpectomy and some radiation - heck, even a pill. And now I read in this article that there was 188% jump in double mastectomies for women newly diagnosed with DCIS since the late 90s. Jesus. I've had a bad pap but no one ever advised a hysterectomy. If you go through a surgery like that, or are close to someone who goes through that surgery, no wonder you would latch onto a concept like "survivor."

The other thing that got me about the article was the statement that there's a lack of knowledge about the mechanisms of metastasis and very little of the money goes to metastasis research. ... What?! Scientists of metafilter, is this true, that we don't have much of an idea? Why wouldn't we want to know how the cancer makes the leap, since it's the metastasis that kills people?
posted by stowaway at 11:30 AM on April 29, 2013


In case it's not clear - I am very pleased that people are talking about breast cancer more than they did 30 years ago. I'm just frustrated that it seems to have stalled at "talk about pink a lot but never actually say the word 'breast'".

Becaue, consider: a lot of netnanny web-censor software blocks sites that mention the word "breast".
Also consider: lots of public libraries may have such software on their public-access computers.
Also consider: there are a lot of women who may be trying to get information about breast cancer at their libraries because they're too poor to own their own computer.
posted by EmpressCallipygos at 11:39 AM on April 29, 2013


You should have seen the look on my ob-gyn's face two years ago when she informed me that since I had had my 40th birthday, it was now time for annual mammograms, and I said, "No." "No? What do you mean?" I went on to explain that I had been doing my research, and since I have no family history of any kind of cancer, since annual mammograms for women under 50 have not been proven to significantly reduce mortality from breast cancer, and since mammograms actually introduce radiation (a known carcinogen) to your cells and tissue, I was opting out. That, and it would likely be extraordinarily painful due to my (lack of) breast size. What I didn't tell her is that if I am ever diagnosed with cancer, I will not be putting myself through chemotherapy, hormone therapy, radiation, surgery, or whatever other horrible thing they will want to do to my body in an effort to kill the cancer before it kills me, which may or may not work, and that treatment will certainly be unpleasant and may end up killing me itself. If I have cancer, then I do. And it may kill me. And if it doesn't, something else will. This is inevitable. I am in no hurry to die, but it's going to happen; why would I choose to make some or all of whatever time I have left so awful? Months of worrying and stress, losing my hair, my appetite, my breasts, whatever else? Ugh. I'd rather just live, and when I go, I go. (Caveat: I'm not sick, have never been told I have any kind of debilitating or terminal illness, and it may very well be that if/when that happens, I will have a complete change of heart and hold on to life with all of my strength and no matter what the "treatment" entails; but I don't think so.)

This essay was wonderful and awful, and I swear I'm going to print it and bring it to my next appointment. Because I'm going to get harangued again for thinking for myself instead of submitting to a painful, probably useless, and potentially dangerous procedure, all in the name of "awareness."
posted by jennaratrix at 12:40 PM on April 29, 2013 [5 favorites]


Thinking about this a bit more - and the places where "awareness" still matter (particularly with older women, who are also more likely to develop breast cancer) - I really want to find a middle ground between the bad old days and the extreme edge of this pink tsunami of questionable marketing and slacktivism, where we empower women to feel more comfortable discussing their health and health options with doctors and energy is directed towards research and prevention options with some eye towards potential efficacy.

Also, I would like a pony hoverboard.
posted by rmd1023 at 12:49 PM on April 29, 2013 [1 favorite]


Jennaratrix, I hope you do have a change of heart if you ever get that devastating diagnosis. Yes, you'll die of something, someday. But breast cancer treatment does not automatically mean futile suffering. Breasts don't return, but hair and appetite do. A few months of chemo, radiation and/or surgery could mean grabbing back many years of active life that the cancer would have taken away.
posted by Longtime Listener at 12:53 PM on April 29, 2013


This conversation sent me back to a previous-favorite blog of mine, I Blame The Patriarchy. Her cancer category archive...
posted by bitter-girl.com at 12:58 PM on April 29, 2013


Longtime Listener - Or it could mean months of pain for no gain. It could be a cancer that wouldn't have killed me, but the chemo and radiation forever changed my body. It could be a cancer that is going to kill me no matter what. Or it could be not cancer at all, and now I've poured money I probably won't have into a system that has done nothing for me. Please, don't hope for that for me.
posted by jennaratrix at 1:09 PM on April 29, 2013


Another thing I have to keep reminding myself re: awareness and information-sharing and support is that the internet (and its surrounding technologies) has done so much more to raise awareness and spread info and allow women to come together and share experiences than anything done by Komen et al.

I sometimes forget how *alone* I felt in the world, pre-internet, when it came to finding people to commiserate with re: certain types of more personal issues.
posted by nacho fries at 1:30 PM on April 29, 2013


I'm 54. My mom had a lumpectomy last year with a side plate of radiation after years of a yearly mammogram. She's cancer free now and fine. But tired. Really tired.


I have never had a mammogram.


From what I have seen around me, I think I will just keep an eye on the girls myself and let them keep all that extra radiation.

And yes, heaven help the poor sot who tries to give my mom anything pink related.
posted by St. Alia of the Bunnies at 2:13 PM on April 29, 2013


But remember, ladies, you have to be AWARE of breast cancer! YOU'RE RESPONSIBLE for avoiding breast cancer just like YOU'RE RESPONSIBLE for avoiding rape.

The message is, do self exams (assuming those aren't discouraged now - I hear conflicting things) and get regular checkups. Be aware that it's a possibility. Public health advice is not victim blaming.
posted by Pruitt-Igoe at 2:18 PM on April 29, 2013 [1 favorite]


so, basically, a mammogram is a painful, embarrassing and intrusive test that actually exposes you to one of the causes of the very disease that it is testing for?

what is this I don't even
posted by 5_13_23_42_69_666 at 4:52 PM on April 29, 2013


I just went for my "well woman" exam, and thought it was interesting that my clinic was aware of the latest guidelines for cervical exams, giving me a free pass until 2017, but still insists on once-a-year mammograms. Why?
posted by acrasis at 5:14 PM on April 29, 2013


so I based my above comment just on reading everyone's comments here, but now that I have read the article I'd like to revise it:

so, basically, a mammogram is a painful, embarrassing and intrusive test that actually exposes you to one of the causes of the very disease that it is testing for, and it isn't even all that effective?

WHAT IS THIS I DON'T EVEN
posted by 5_13_23_42_69_666 at 5:32 PM on April 29, 2013 [1 favorite]


Public health advice is not victim blaming.

Nope. Not at all. Public health advice is awesome! Necessary but not sufficient, however. Warnings about early detection just seems insufficient in the face of all of the issues with getting health care for women (and men) who have cancer, which (since I'm hating the patriarchy today) feels a bit like warning women to carry their car keys between their knuckles in case they're attacked as a way to avoid rape. It's a thing you can do but it isn't necessarily going to have any effect.

Also, I mistyped above - I should've said "YOU'RE RESPONSIBLE for detecting breast cancer..." not "avoiding". But I digress. It just seems like the public health advice is all "women, do this to detect breast cancer" and not "here are institutional things we can do to improve the situation for people with cancer, and here are ways to minimize your exposures to carcinogens." And also, I was speaking from a rage-y place of great anger and frustration because cancer has been pissing me off even more than usual lately. Apologies for being extra-grar-ranty.
posted by rmd1023 at 6:24 PM on April 29, 2013


The NYTimes' Well Blog has a post touching on some of these issues and pelvic exams, but oh my God, would it kill them to post something on women's health that ISN'T illustrated in pink and with a lotus/pan-Asian symbol for organs? If you have a lotus for a uterus you probably do need a doctor! Is there some Stirrup Pose that I've been missing out on?
posted by jetlagaddict at 6:45 PM on April 29, 2013 [1 favorite]


so, basically, a mammogram is a painful, embarrassing and intrusive test that actually exposes you to one of the causes of the very disease that it is testing for, and it isn't even all that effective?

Possibly, in some cases, like a great many medical tests. In other cases it may well save your life.

As someone both of whose parents and whose long time partner have all detected cancers in the last decade in early stages (read: treatable with less awful surgeries and procedures) -- thanks to routine screenings -- some of the comments in this thread are starting to sound a bit vaccination-conspiracy-theoryish to me, and that's troubling.
posted by aught at 5:47 AM on April 30, 2013 [2 favorites]


some of the comments in this thread are starting to sound a bit vaccination-conspiracy-theoryish to me, and that's troubling.

I'm all for vaccinations, but I don't get an annual tetanus or rubella shot, nor would any physician recommend that, because the medical evidence indicates that doing so would be ineffective and wasteful. There are definitely risk factors that mean some folks need some types of routine screening sooner or more often than others, but advocating ultra-frequent screening across the board for everyone when the science doesn't support that isn't a great way to build consumer trust in the health care system. If we all got chest x-rays or full-body MRIs every six months, we'd be more likely to catch any pre-pre-pre lung cancer that appears, so why isn't that the standard of care?

Heck, it used to be an article of faith that monthly breast self-exams were MANDATORY if you don't want to DIE, but the research has debunked that, to the point where the American Cancer Society now pretty much says, "Eh, whatever, doesn't matter."
posted by FelliniBlank at 7:54 AM on April 30, 2013 [1 favorite]


It's really hard to walk that middle path - denial and ignorance and fear of mortality can have people ignoring danger signs and avoiding medical care. And some cancers have remarkably vague symptom lists. (Ovarian cancer, I am looking at YOU right now.)

And then the overcompensating response - also coming from ignorance and fear - is "ALL THE TESTING ALL THE TIME", and that's not right either.

Self-exams aren't a hugely helpful thing from a straight-up "did it detect the cancer before other testing" angle. On the other hand, having women who have such body shame or modesty or whatever that they're not comfortable talking to their doctors about some of these issues (and I'm related to some of those women and it freaks me out to hear them talking sometimes). So maybe pushing self-exams ends up having a second-order result of getting some women more able to talk about this stuff, so we should keep pushing that? I don't know.

And when you get into clinical diagnostics, it does come down to a game theory thing of "risk of not doing it" vs "risk of doing it" with the added axis of "accessibility vs cost vs efficacy". And if there's one thing humans are really staggeringly bad at, it's estimating risk and making theoretically 'rational' decisions based on it.
As Robert Aronowitz, the medical historian, told me: “When you’ve oversold both the fear of cancer and the effectiveness of our prevention and treatment, even people harmed by the system will uphold it, saying, ‘It’s the only ritual we have, the only thing we can do to prevent ourselves from getting cancer.’ ”
But now that these 'awareness' campaigns are becoming so tightly linked with the diseases and the victims/survivors, it feels like there's no room to push back against the corporate publicity juggernaut that says that BigCompanyInc cares about women, because they package their DDT in pink bottles or something, and your insurance that limits your access to medical care while sending you letters about how awareness is important.
“These campaigns all have a similar superficiality in terms of the response they require from the public,” said Samantha King, associate professor of kinesiology and health at Queen’s University in Ontario and author of"Pink Ribbons, Inc.” “They’re divorced from any critique of health care policy or the politics of funding biomedical research. They reinforce a single-issue competitive model of fund-raising. And they whitewash illness: we’re made ‘aware’ of a disease yet totally removed from the challenging and often devastating realities of its sufferers.”
posted by rmd1023 at 9:11 AM on April 30, 2013 [3 favorites]


I'm all for vaccinations, but I don't get an annual tetanus or rubella shot,

I would hope not, since the tetanus booster is designed to last up to ten years, and rubella is only given to small children.
posted by aught at 1:25 PM on April 30, 2013


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