Saturday, January 24, 2009

Mammogram misinformation.

I was shocked to read this on a blog I link to:

No, I refuse to have a mammogram.

It’s a dirty little secret of the medical profession, with all the scare talk and big shiny posters about how “mammograms save lives”, that the health benefits of mammograms are not scientifically proven. There is no proof that they save any lives at all. It is, however, certain they make some people a lot of money.

Furthermore, breast self-exams - you know, that thing we’re supposed to do every month and feel guilty if we skip? Doesn’t help us either.

You can click on the above to see the links she includes as evidence. Here's what else she says:

A common way to justify the nerve-wracking, expensive, fear-inducing body self checks and mammograms is for doctors to repeat ad nauseam “Studies prove women who get these exams survive an average of two years longer than women who don’t!”


Think about this logically.

If your cancer is detected two years earlier than it normally would have been… you haven’t really lived two years longer. Instead, what you’ve “gained” is two extra years of medical treatments that fail to save your life.

In other words, as the above articles show, “early detection” - that is, detection of cancer at a stage a woman wouldn’t ordinarily notice any differences in her breasts - does not save women’s lives.

Yet a slick, brilliant, fear mongering media campaign has been aimed at us for years. “Mammograms save lives!” “Early detection saves lives!” “Every woman over 40 needs to have a mammogram!”

All lies.

This, combined with the constant stories from women who have them on how uncomfortable, painful, and humiliating mammograms are, make me suspect the entire purpose of this mammogram scam is to sexually torture women and get away with it. I can’t tell you how many times people have looked at me - I am very large breasted - and made some comment like, “Wow, it sure is gonna hurt you when you have to go get a mammogram!” They always look shocked when I tell them I have no intention of doing so. “But but but - you HAVE to!” People with no reason to have any interest in my health get upset when they discover I will not fulfill their sadistic fantasy of having my large breasts clamped into a giant vise and irradiated. It reminds me of the sort of sadistic glee I would see on people’s faces when they would look at my hugely pregnant stomach and tell me the worst labor horror stories they could recall.

I'm not going to go digging around for stats (and I would really appreciate if, if you would like to do so, you don't post them here), but I will share my own experience, which is diametrically opposed to the above claims. I will also note that I've been working with some of the most esteemed breast cancer specialists in the country, and I think they would take issue with some of the above.

I don't really know that mammograms or self-checks are effective in picking up breast cancer. If you have dense breast tissue, as I do, those buggers can hide out. My cancer wasn't easily identifiable from a mammogram, though the mammogram indicated the need for further tests, which eventually led to an ultrasound guided biopsy and a cancer diagnosis. And, while I did eventually find a lump and may well have found it sooner had I been doing self exams, it's also true that the lump was likely present but missed at my annual exam in June.

But I will also point out that I have large breasts AND I have had quite a few mammograms. News flash: in my experience, they don't hurt. Or, rather - if they hurt, then 1) the technician is incompetent, and/or 2) you need to cut out the caffeine before you have your mammogram. But the mammogram, just as a procedure, is not inherently painful, just as a cervical swab is not inherently painful, though it can be if you have a condition that makes your cervix sensitive or if you have a GYN that isn't well-trained. Women should be angry that mammograms haven't always been sensitively and carefully administered, certainly, but recently, it seems that they have become a better experience for many, if not most, women.

But none of this really frustrated me about Amananta's post. The thing I found most upsetting was her assumption that women with breast cancer are going to die of breast cancer. Of course, when I was diagnosed, that's what I immediately assumed. And, of course, I still worry about that. But what I'm learning is that more women survive it than don't. There are some oncologists who even talk about being able to cure it (which is the hope for me), and my surgeon talks about it as a chronic condition, like diabetes, that can be treated and managed for years and years and years and years (and I'll take that, frankly). But a huge factor in survival is early detection, and that's what the self-checks and the mammograms are all about trying to do.

Determining what health care services one will or will not avail oneself of, just like determining one's course of treatment for a particular illness, is a very personal thing, and I support Amananta's right to make these decisions for herself. What makes me sad in reading her post, though, is that the women who are at greatest risk are the women who don't have access to healthcare, women who can't afford mammograms or don't have access to them. Women of color, particularly African American women, are at enormous risk. Yet Amananta has revisioned mammograms as a plot to make money at women's expense, as a form of "sexual torture," and such a ludicrous statement seems to me to make light of the struggles that women with breast cancer or who are at risk of breast cancer face (not to mention making light of actual sexual torture).

There is plenty to be critical of when it comes to the Breast Cancer Awareness Industry - absolutely. But spreading misinformation about breast cancer is not an ethical response.


Trinity said...

Some people are just... very into their little theories, and woe betide you if you aren't.

I've gotten into scrapes with Amananta before, regarding some of her "I know the true face of the BDSM community" posts -- I get the impression there's a strain of "I've got my truth, and that's it, and you just haven't SEEN REALITY if you buy what regular people are selling you" there.

I don't mean to suggest Amananta doesn't have worthwhile things to say, here, but... from prior experience I'm not surprised to see her say something like this. There are some people in the blogoverse at least who really have... well, they have where they see the system failing people, and in some cases, like this one, I think some of them take somewhat flimsy evidence as truth on the theory that anyone "outside the system" doesn't have "science" to back herself up, but that's only (to them) because "the system" is corrupt.

Anonymous said...

Wow, I'm so sorry you saw that. Reminds me of that breastfeeding nazi I linked to when I found out you had breast cancer who said that women would not get breast cancer if they just breastfed.
There's a lot of that same sentiment about children's vaccinations, childbirth, anti-depressants, and so on. Maybe the fact that they're going there now with breast cancer will cause them to loose credibility.

Little Midwestern College said...

Amen to you Sister!

What is it with these people? Medicine is a *science* and without the science of early detection and treatment I for one, would be dead several times over. I just don't understand how some folks can use twisted logic to create a narrative that takes something that has preserved the lives of women and made the quality of our lives better and turn it into a story of how it's harming or even killing us on purpose. Yes, medicine isn't always a perfect science--or have a perfect history--and yes we do have a long, long, way to go to be sure that everyone can benefit from it. But that's no reason to throw the whole thing out.

Aargh, now I've got started & I'm going to be mad all day. . .

hexy said...

I can’t tell you how many times people have looked at me - I am very large breasted - and made some comment like, “Wow, it sure is gonna hurt you when you have to go get a mammogram!”


Who the hell SAYS something like that? If this is happening often, I think she might need to reconsider who she's spending time with.

I can certainly understand disillusionment with the medical system... but there's a few lines crossed there. And I'm so sorry you had to read that.

Wide Lawns said...
This comment has been removed by the author.
Plain(s)feminist said...

I think a lot of women, especially, are suspicious of doctors and medical science, and rightly so - we have a history of testing birth control on women and harming them (knowingly) while doing so, of sterilizing women without consent, of medical neglect, and so on. There's also the whole "obesity epidemic," which has whipped everyone into a frenzy but which does not appear to actually be an epidemic (and then, there is also all the data that shows that fat is not inherently unhealthy). We also know that the mighty dollar drives the science. So I'm sympathetic to those who don't trust what their doctors say.

But I also know that there is good work being done and that there are tests and medications and surgeries that can help us survive.

I may be having a total hysterectomy in addition to a bilateral mastectomy, so I will have more to say about all of this in relation to that. (Not to mention - if I do have that surgery, I will have almost nothing left of my "female parts". I'm ok with that - but I'm tripping on the theoretical implications, and looking forward to arguing with the next radical feminist who says something like, "a woman is someone who bleeds/has a uterus/etc.")

Plain(s)feminist said...

Trinity -
I often disagree with her, but I also think she speaks important truths and has a perspective that I learn a lot from. So I generally don't respond when I don't agree, but with this one post I felt I had something to say. (I would have posted something on her blog, but she had comments closed.)

And Hexy, yeah, I'm often surprised by how rude people can be about things like that!

andi said...


Anonymous said...

You haven't blogged for a while, R-U-OK?

Plain(s)feminist said...

Danielle - yup, just busy and wasting too much time on Facebook.

Anonymous said...

Facebook is so addicting. I have gotten back in contact with tons of people from my past. It's scary, but cool! You can add me if you want. Just do a search for my name (maiden name and married name)
Hope you're doing well.

Zan said...

I had a mammo when I was 30, as a baseline and because well, i have really dense, lumpy breasts and my doctor wanted to make sure that the lumps were really all just cysts -- and I had the insurance to do it, so why not? It was NOT painful at all. Uncomfortable, sure. And I've got a pair of DDs here. But it's not sadistic and it's not painful. It's just...well, you know. You get it done, it takes about 20 minutes and then you go about your day.

As for that crap about self-exams -- I have REALLY lumpy boobs. Fibrocystic, they call 'em. I do the exams so I can keep track of what lumps are normal and what has been changing. At my age and given my family history, any change is likely perfectly benign - but my grandmother's sister found a lump so tiny that her doctor couldn't feel it. The doctor wanted to wait it out, but she insisted, got some more testing and it turned out to be Stage One cancer. She got it cut out and she's fine now. That was...oh, at least a good decade ago. And she's still alive and happy and getting to see her grandkids. Her self-exam absolutely saved her life. So all that other crap? Please.

If a woman does not want to do self-exams or have mammos -- fine. Your body, your right to do or not do what you want. I would never argue otherwise. But come on....

Denise~ said...

Several years ago the woman who conducted my mammogram told me how much more they hurt for small breasted women (I'm smaller than an A cup). When you have nearly nothing to squish - it does hurt. But I REALLY did not need to hear that - from her. Nor was I thrilled when she had to repeat the procedure because "my breasts were too small to get good shots of".
Needless to say I cried all the way home and then wrote a letter to my Gyno.

I still get a mammo every year.

Some people are just crazy.