Jill, formerly Twisty, of I Blame The Patriarchy, herself a double-mastectomy survivor, reflects on an intrinsic bias towards treatment over prevention for many types of illness — breast cancer in her case.
Specifically Jill was responding to the lack of online information, particularly photographic information, about mastectomy and aftercare compared to, say, enough images of pink ribbons and pink soda-bottle packaging to repave Los Angeles.
As Samantha King writes in the enlightening Pink Ribbons, Inc.
:
[Women] are discouraged from questioning the underlying structures and guiding assumptions of the cancer-industrial complex. The culture of breast cancer survivorship does not, in other words, embrace patient-empowerment as a way to mobilize critical engagement with biomedical research, anger at governmental inactionk or resistance to social discrimination and inequality, even if its history is bound up with attempts to do just this.”
People can’t find out how really fucking gross treatment is, because if they did they might start thinking, hey, maybe preventing breast cancer — as opposed to waiting for women to get sick and then slamming them with a series of debilitating, barbaric procedures — is a good idea.
One needn’t agree that there’s a purposeful conspiracy to get the point that there’s not as much emphasis placed on finding ways to prevent common illnesses like breast cancer as there is for “the cure” after they’re diagnosed. Nor does one need to think the emphasis on treatment boils down to profit motive to agree more emphasis could be put on prevention.
Part of the problem, of course, at least in America, is that we’re great optimists and (Katrina notwithstanding) pretty good at responding to immediate catastrophe. And so we have a hard time in general with anticipation: “you won’t get cancer if you…” when you don’t have it (yet) is just way harder to gear up for compared to how we’re able to marshall ourselves in the face of “you have cancer…” (What’s that line “nothing so concentrates the mind as the prospect of being hanged in the morning?)
But I digress. I just want to echo Jill’s point that when one is facing a crisis like prospective surgery and chemotherapy (of any sort) it would be awfully nice if there was as much information available about what to expect before and during the process as well as there is for after.
Oh, one last thing: this, I think, is one of those areas where blogging really shines. It’s sometimes heartwrenching to read someone’s personal experience with surgery, recovery, chemo, remission, reoccurrence. But it’s very good to know. Just as its good to know what to expect before our first kiss, our first orgasm, our first time driving, our first child, or job, and so on, it’s good to know what to expect when we fall ill. Again, that’s where people who blog have shined.
Submitted by 3185 (not verified) on Sat, 2009-09-05 18:16.
I think part of the problem is she was looking for layman accessible information on line. There's plenty in professional science and medical sites or for that matter reference sections of academic libraries. I'm not about to blame the patriarchy if what I'm looking for is not easily on wikipedia.
I also know a lot of medical professionals object to calling science proven medical treatments barbaric because that is the phrasing the scam woo treatment quacks use to scare you into thinking holy water will cure you for enough dollars. Sorry but life and death treatments of our meat shells is never going to be pretty or pleasant and that is not a gender issue; but walking around believing that medicine is being sadistic to you because of your gender just leads to patients becoming easy targets to be taken advantaged of by con men.
Submitted by 3185 (not verified) on Sat, 2009-09-05 21:37.
I personally blame not so much the patriarchy as how conservative cancer research and medical research is.
Basically as Susan Love once argued that there are a lot of more innovative ideas on how breast cancer might be prevented or treated. One suggestion involved developing a "ductal lavage" identify early signs that breast cancer is likely to happen in the next 5 to 10 years, and find relatively less invasive ways to nip in the bud (no pun intended). She also talked about directly applying chemotherapy through breast ducts to very early stages and such.
But the issue is to me WAAY beyond the "money for breast vs. prostate cancer" sort of debates.
Some notions that don't get explored:
1) Many scientists think that infections have a much larger role in causing cancer than has previously been suspected.
2) Some toxicologists are saying that most pollution is doing much more damage to immune and endocrine systems than direct carcinogenesis.
3) It could be that some genes or medical histories that predispose people to cancer, might be correctable by giving a certain vitamin metabolite, or yet poorly understood hormone (like we now have thyroid replacement medicine) that the person can take like a daily vitamin.
4) We might find that immunological therapies, heat therapies, therapeutic cancer vaccines (as opposed to vaccines for carcinogenic viruses), robotic surgeries, herbal preparations, and other therapies can be effective.
5) We might be able to attach either radiopharmaceutical substances and/or tiny "packets" of chemotherapy to antibodies designed to recognize the cancer cells. That way the radiation and toxic chemotherapy can target the cancer cells much more specifically and more easily "catch" cells that might cause a metastasis or cause the cancer to "come back for round".
6) We might find that certain biochemical or immunological imbalances predispose people to various cancers, (ei leptin was discovered less than 20 years ago) and that maybe there is a cheap and simple way (generic drugs, herbs, vitamins, vitamin metabolites, or such) to correct such dangerous biochemistry.
7) We might find that vitamin D deficiency has a higher role than ever suspected in cancer, autism, obesity, and so many other problems.
As Susan Love said of her ideas some of these notions are high risk research that might not pan out. But it's better than the current level of repetitive studies on cancer and diet, that too often just repeat what we already know. Fighting over whether breast or prostate cancer patients have gotten a crummier deal, actually distracts from some real possibilities.
I don't particularly blame the patriarchy!!
At least not this time around! Heh! Heh! Heh!
Submitted by 3185 (not verified) on Sat, 2009-09-05 21:57.
I get quite angry when people suggest that the medical establishment could fix everything, but they let people get sick for the sake of money.
-"The medical establishment" isn't one thing. If Doctor A invents a way to prevent breast cancer, Doctor A gets fabulously wealthy and famous and adored no matter how much of that juicy mastectomy money other doctors may be losing.
-Medical professionals have breasts too. My mother is a card-carrying member of the medical establishment and she's a breast cancer survivor. I don't think the evil establishment people want money more than they want to protect themselves and their loved ones.
Or their patients, for Christ's sake, it's not easy to know someone's name and face and family and talk to them and watch them get sicker and die. Even when you have no connection beyond work, it gets to you. Sometimes a lot. I can't picture the amount of money that you'd have to pay me to let that happen when I could've stopped it.
-Think treatment's "barbaric"? Try dying. It's barbaricer.
Hell, it's no secret that surgery and radiation and chemo suck. It's like the least secret thing in the world. Look at any cancer patient/survivor website. I've never heard a doctor tell a patient that it would be bunnies and rainbows, either. The only selling point, if you will, is that it sucks less than a slow painful death.
-Cancer patients themselves aren't volitionless little pawns being manipulated. Twisty's criticism of things like breast reconstruction and the "survivor" culture misses the point that these are the decisions of the survivors themselves. If a woman herself wants to have breasts or cover her head or take pride in what she's been through--shit, I'm in no place to tell her not to.
Twisty, as in so many posts, seems to be telling women--women with cancer, fuck--what to do. And that if they don't agree then it wasn't really their decision, they must be pawns and not know it. That attitude pisses me off pretty bad.
[I've got a lot of doctors in my family tree too (especially on my partner's side) and yeah, that's why I think it's a shame people go blaming them for structural problems. The "conspiracy," if you really want one, is that politely ignore it when their doctor says "exercise a little more, eat a little less, stop smoking, eat a baby aspirin and a one-a-day every day" but then spare no expense or effort once they're diagnosed with something. But like I say one doesn't need to believe in a conspiracy to lament the way aggregate public interest allocates attention and funding. And (my real point) one way to change the dynamic is for people who care to start posting their own text and photos of their experiences. The Susan Komen Foundation, which is the 800 pound gorilla in the public-awareness room, just ain't gonna do it. And again, not because they're conspiring but because that's not their focus. Thanks, Holly. --fl]
Submitted by 3185 (not verified) on Sat, 2009-09-05 23:28.
Au contraire,
There is a lot of research into the mechanisms of oncogenisis and hopefully its prevention. It's of necessity multifarous as there's no one 'thing' that causes all cancers and teasing out what's important from what's merely concurrent is of necessity a very slow process. Any quack can shout 'pollution', 'diet' what have you, but good science shows what aspect, when, by what means, to what extent and why.
*Some* cancers are indeed the result of infections and some are infectious such that cancerous tissue from one individual will grow in another. However, those aren't the whole story: only a few cancers are definitely known to do this. The same goes for all the other possibilities.
And at the end of the day, no matter how good the science of predicting and preventing cancers gets, people will still get cancer just because of random bad luck. Never underestimate that.
Submitted by 3185 (not verified) on Sun, 2009-09-06 08:04.
Holly's comment that chemo and radiation suck less than a slow, painful death makes one really big assumption - that the person will survive at the end of it all. Often, patients undergo months of harsh treatment only to die anyway. It's also not certain that every person would pull out all the stops in order to survive. My own husband has said that he's not sure he could choose further treatment if his lymphoma recurs. The husband of my mother's best friend, who's been on androgen deprivation therapy (chemical castration) for the past decade to keep his prostate cancer in check, has repeatedly said that he would rather have died than live as he does now.
Sure, some breast cancer survivors take comfort in a culture of pink ribbons and teddy bears, and they actively choose it. But what are the options if you don't want to embrace that culture? Barbara Ehrenreich wrote a great essay several years ago, Welcome to Cancerland, which describes how hard it was for her to find support that wasn't also infantilizing. I've also participated in numerous online cancer support groups (not for breast cancer, though). Many (not all) presume that all the group members are conventionally religious. In some groups, the vocal members consider a positive attitude to be so important, it's hard to be frank about things like anger and resentment.
People can reasonably disagree with Twisty's (and Ehrenreich's) criticisms of the "cancer-industrial complex." But when it comes to the relentless pressure to be brave - to claim that "cancer has made me a better person" - she's right on. And it's not just breast cancer "survivors" who feel that pressure, it's just that for them, it's all wound up with femininity.
Submitted by 3185 (not verified) on Sun, 2009-09-06 08:34.
Just a quick link you may like that ties into your comment,
"Oh, one last thing: this, I think, is one of those areas where blogging really shines. It's sometimes heart wrenching to read someone's personal experience with surgery, recovery, chemo, remission, reoccurrence."
This woman's blog, actions, etc really grew (video, t-shirts, tv show appearances, etc), but there's an online support community that's come from it that's really inspiring and informative.
http://www.crazysexycancer.com/
Submitted by 3185 (not verified) on Sun, 2009-09-06 09:53.
Well, ultimately we all die. It's just a question of how. I think a lot of what you're talking about is simply expectation management.
For any illness a patient presents with, there are four possibilities: 1. Treat patient, patient improves. 2. Treat patient, patient gets worse. 3. Do not treat patient, patient improves anyway. 4. Do not treat patient, patient gets worse.
In some cases, there's a serious question of if the potential harm of treatment is worth any potential gain e.g. prostate cancer in an elderly patient (where it's very possible that the patient will die of other causes before the cancer ever becomes a problem), but untreated breast cancer is *ugly* -- it's a very nasty, excruciatingly painful, slow way to die. It's often very disfiguring when the cancer eats clean through the breast tissue to the outside world and it reeks. You don't have to believe me: just go to any Third World country's hospital where treatment isn't widely available and patients come in terminal.
There's no guarantee that chemotherapy or surgery will work, but in the case of breast cancer it'd be unethical to *not* try if there's any possibility whatsoever that it might work or even just extend the patient's life.
I did read Barbara Ehrenreich's (she's one of my heroes!) account on breast cancer advocacy and support and I can definitely see where she was coming from. I have real problems for one with the notions of 'fighting cancer' or 'positive mental attitude' which are absolutely irrelevant to the progress of the disease and are an appalling way to try to make sense of a random process, but ultimately it's a failure of social expectation and understanding rather than a problem of the science or medicine behind treatment.
Submitted by 3185 (not verified) on Mon, 2009-09-07 19:43.
I think the defensiveness of medical folks here is misplaced. If there's a conspiracy of silence on causes, it's not coming from doctors. "The medical establishment" doesn't see us til we become patients - the conspiracy, if there is one, is the folks who deal with us before that - health insurers who use information against us so we're unwilling to have our genes tested or our health histories tracked, polluting industries we work for or live near, the whole damn culture that says "suck it up and go to work".
There is research about oncogenesis going on - but does it get the funding "the cure" does? It definitely doesn't get the news coverage and it doesn't have the advertising oomph.
[Hi Rosa. I strongly agree. It's way less a conspiracy than an "invisible hand." Except, of course, it's more like "invisible till they arrive by ambulance patients." And yes, the pressure to suck it up and get to work is pretty intense too. Thanks so much. --fl]