FEAR

I’m sure anyone remotely interested in breast cancer has seen and read The New York Times Magazine. Heck, I reblogged it as a part of ihatebreastcancer’s blog and additional comments. It’s like a reader’s digest version of nearly every article or criticism of breast cancer awareness/marketing/issues I’ve read in the past two years, and I am sure anyone reading this blog is familiar with nearly everything in the article—before even reading it. But that is because we seek out info about breast cancer more than the average Jane. Perhaps the good news here is that this piece is in a non-cancer oriented magazine, so maybe more people will learn some truths about the pink machine. It is odd this is published in April not October. Not complaining mind you, for many of us breast cancer is an every-damn-day-of-the-year-not-just-in-October deal. I admit I am a little worried that a piece challenging the common perceptions of breast cancer is released nearly half a year away from the signature month when the media generally toes the proverbial line. I hope this magazine/article is remembered when October comes and we are drowning in pink, but I am sure pink events and products were in planning stages by November 1 of last year, and it is already too late to turn it around this year. Maybe next year.

I wasn’t going to write about it, figuring everyone else already has, and mostly I agreed with the article. But I had a hard time with the idea of “distorted fears of middle-aged women”.

To be fair, this article is the not the first time I’ve read someone comment that the pink marketing is selling fear to women, scaring them into getting mammograms, interpreting/presenting the stats to make it seems as if getting breast cancer is nearly inevitable if you’re a woman (1 in 8 was really picked on in one book I read), but it really bothered me this time around.

The author admits the fear is legitimate. And I agree that the fear is manipulated for profit. We’re taught to fear cancer so we get mammograms, but reassured that if does happen, it can be treated (thanks, awareness funding from drug companies! YES I’M BEING SARCASTIC)…so I guess fear marketing only goes so far. After all, pink never mentions metastatic cancer, and we should not fear death, cancer patients don’t die, we lose our battle (YES I’M BEING SARCASTIC, read my earlier post The D Word).

But here is the thing: I was not afraid before I got cancer. The pink awareness marketing may drive women to getting mammograms, may intimidate with the stats, but I thought when it happened to me, I’d be much older. I suspect that is the case with many young women with cancer, and I think some women of any age, without cancer, think it will not happen to them ever. They might recite the “1 in 8”, but assume they’ll be one of the other 7. So how real is the fear?

When my aunt was diagnosed in 2010 at age 50, I dutifully went for my annual, asked for a mammogram. The doctor did not detect anything in August. The mammogram performed in September was negative. By October 25, 2010 I had Stage 3 breast cancer. Color me shocked. When my nipple inverted, right after my “all clear”, that was when I had fear, and anger, of course, because the industry system—the pink message—failed me. Some would say that I should be grateful that I was not so full of fear prior to cancer, because detecting my cancer a bit earlier may not have changed treatment much—most likely I’d have still had my nipple removed—but I would like to have avoided the chemo or radiation if an earlier detection made it possible. I am not sure how I feel about all this.

So I ask myself what the hell am I so afraid of right now?

  • Recurrence, duh.
  • Another failed mammogram—misdiagnosis  
  • I’m afraid of wine, of all delicious foods, because I want them, and they allegedly cause cancer and every other health problem.
  • I’m afraid that as a dog walker who walks by pesticide treated lawns several times a day that I am causing a return of cancer, or a new cancer, in myself. I guess I could control that by quitting my job, but then how would I pay for cancer? Which leads to…
  • I’m afraid that if/when cancer comes back, I will not be able to afford treatment, so I will likely die, and there seems little I can do about that. You could say I should not have quit my job which had better insurance (co-pays are sometimes more than twice as much with my new government plan), but honestly, I am not sure I would have survived if I’d stayed in that job, it stressed me so much. 
  • I’m afraid my friends and family will get cancer. Hell, I’m afraid anyone else will—especially young women. Because there is so little REAL investigation into prevention, and the cause still seems to be mostly unknown.  And I blog and fuss and try to learn to be a health advocate because I actively do not want another young woman to go through what I went through, but I know I can’t prevent it. This is helplessness as fear.

Is shock at getting unexpected cancer worse than being afraid prior to getting it? I cannot ever know the answer to that question. I just don’t want ANYONE else to feel that shock, because it does not eliminate the fear that comes after. I mean, now I just have both fear and shock (and oh yeah, anger), and I’m not sure I like that. I don’t know if that is better or worse.

So what about all this alleged fear-mongering perpetrated by pink medical industry? Yes, I do think it is wrong when done just to drive profits. But from where I’m standing, the fear is reasonable….because I got cancer. And others under the age 40, with little to no risk factors will get it too. And no one knows which one of these young women will “get lucky”, because we have no prevention, no understanding of causes. These women should be afraid but they just don’t know it yet. I just don’t know how else to say it.

Does Breast Cancer Owe It to Other Cancers?

A/N This is a potentially offensive post, please follow my train of thought to the end, I am trying NOT to be a jackass, and failing. This is just how I am seeing this issue at the moment. I beg you to change my mind in the comments.

Here is yet another criticism of that 2020 deadline, Can Setting a Deadline Put an End to Breast Cancer?  by Geoffrey Kabat. I’ve already blogged about this issue, when that editorial in “Nature” appeared few months ago.

Honestly, I have a few problems with the 2020 Deadline myself, even more now than when I originally wrote about it. My biggest problem is one of the main issues confronted by these editorials: that discovery cannot be forced; it will not answer to a deadline. I agree with this, and even the idea that setting a goal that has a real chance of NOT being met is a bit risky.

But what irks me is in both of these pieces, there is this suggestion, no, AN EXPECTATION that breast cancer activists, advocates, organizations should focus on other cancer problems, not just breast cancer. These activists/organizations have done such a good job of creating awareness (really?), the energy should be applied to other cancers, so the thinking, I assume, must go.

Is it really the best solution for National Breast Cancer Coalition, or any other organization DEDICATED to breast cancer, to handle other cancer problems? I mean, National BREAST CANCER Coalition, see? BREAST CANCER right there in the name. There probably are already some organizations taking on other cancers in baby steps now; goodness knows the damn ribbons for all other diseases exist (stop reducing diseases to ribbons!), and I suspect these groups have adopted some tactics of breast cancer awareness. If so, let us hope these groups learn from pink marketing’s mistakes before they go too far. The deadline has a focus of ending breast cancer, misguided or not, but that is because the whole point of the organization is…wait for it…BREAST CANCER. That is why it formed. Its objective, according to an old address by its president Frances Visco, is to end breast cancer and cease to exist because it would no longer be needed. Why would anyone think it should do other work—to self-perpetuate?

It’s just that the logic demanding breast cancer organizations (which were formed for WHAT disease, again? yes I’m being sarcastic) work on other cancers is flat out faulty. Go with my flow here for a second. This author points out lung cancer kills more women, and says a breast cancer organization should do something about it. This implies breast cancer is just a women’s problem, breast cancer organizations are just women’s organizations. Well, no, men get it too, and a breast cancer organization is about all breast cancer no matter what the sex of the body it’s in; and the breast cancer organization is not focusing on all health issues suffered by women (because it was formed to focus on what disease again? Say it all together now: BREAST CANCER). Yes the opposite is true; breast cancer can be under the umbrella of women’s health. So when he says “The exclusive focus on breast cancer skews one’s perspective by blotting out other opportunities,” does he really mean we should get rid of some breast cancer organizations, and pay less attention to breast cancer because other diseases kill more women, and are therefore more important? Because that is kind of what it sounds like, and that would be incredibly stupid.

Also, I am a little confused and bewildered at the author’s suggestions that breast cancer organizations work specifically on lung and cervical cancers. According to the information in his editorial, the causes of these two are known and preventions available. The reason the 2020 project is in place is to find the cause(s) and some preventions for breast cancer. That would mean, work on breast cancer is far behind the work on these other two cancers. So, is he suggesting breast cancer organizations work on these projects because, what, it’s easier? And what, just say to future breast cancer patients, sorry you’re SOL, it was easier to sell what we already had or knew, because we did not want to invest in even trying to make a discovery?

Perhaps the bug up everyone’s ass is jealousy because of all the attention breast cancer has amassed over the past few decades. I KNOW lung cancer AND heart disease kills more women. Not this article, but plenty of other articles about heart disease always seem to start off with a sentence about how heart disease kills more women than breast cancer, as if the authors are personally offended that breast cancer gets more attention than their cause (read this fabulous rant by a blogger on Tumblr). I know everyone has their own agenda, their own pet cause because it is something that impacts them, and each individual is entitled to their viewpoint and their cause. But picking on breast cancer is just getting tiresome.

Breast cancer organizations are most likely run/staffed/founded by those with personal knowledge of it, which is why they work on it (duh, it is what they know best), rather than, say, heart disease. I blog about breast cancer because I had it. When I get heart disease, I’ll blog about that too. It is the nature of the beast. Should diseases that kill more people get more attention? Maybe, but how does that make those diseases more important, more devastating, than a rare disease to someone who has had loved ones die from said rare disease? Who the hell goes around saying “my disease is more important than your disease because it kills more people”? Breast cancer patients, imagine saying to your ovarian cancer friends “breast cancer is more important because more women have it?” How much of an asshole would you have to be to say that? But it seems OK to imply these other diseases are more important than breast cancer for the same reason. Breast cancer may be viewed as a big ol’ pink bully in disease world, but it is starting to be the one bullied. Apparently payback is a bitch.

color pink

The blessing and the curse of pink marketing is that it made breast cancer seem like the most important and desirable cause in the world; getting a lot of money and research which resulted in treatments that saved lives, including my own, for which I am grateful. But the fact is, pink dollars didn’t stop breast cancer from happening to women, it didn’t even really slow it down, just stopped some of the dying. But not all of the dying. Breast cancer patients still get mets and die, no matter how much pink marketing pretends this doesn’t happen (remember, cancer patients don’t die, they lose their battle). In short, pink has not been a blinding success. So when advocates for other health causes complain about how much attention breast cancer gets, I suggest taking a long hard look at that, and understand there is a dirty underside to pink that needs exposure. And there are plenty of bloggers exposing it, it wouldn’t be hard to learn the truth.

Back to the question at hand, do breast cancer organizations owe it to other disease problems? I’m certainly not suggesting here that breast cancer groups should just turn up their noses and say “not my problem” about other cancers. There are more breast cancer survivors because incidence has not decreased like the death rate. I may feel a personal obligation to advocating, yelling, on behalf of those causes, but I don’t think an organization devoted to a certain focus should split that focus; that is unfair to the people the organization set out to serve. It is difficult to say which is the more compassionate choice here, if there is one. And yes I do realize that new organizations for unrepresented causes/diseases cannot just be created with the snap of fingers. I don’t have the answer; I’m only asking the question. It will take many minds to come up with the solution.

3D Mammograms and Tomosynthesis for Early Detection

Another one with a false negative mammogram right here.

denise4health & hello COURAGE

Reading this post about 3D Mammograms, Tomosynthesis, and Dense Breasts may save your life.

This new mammogram technology was only approved by the FDA in February, 2011.   http://www.diagnosticimaging.com/tomosynthesis/fda-approves-first-3-d-mammography-imaging-system

In one day, I heard from two women who had Tomosynthesis.   It probably saved their lives, and certainly gave them a much better chance of survival.  In their cases, they had to pay $50 and $40 more respectively in addition to insurance.  At my local hospital,Mercy St. Charles, Oregon, Ohio, they do not charge any additional, so check with your hospital.  So many women I hear from had lumps that were never discovered on a regular Mammogram.  By the time they were diagnosed, they were Stage 3 or Stage 4.  And over 40% of women who are diagnosed with breast cancer find their own lumps.  The cold, hard reality is that many , many women diagnosed with advanced breast cancer had nice little letters from their mammography center saying they were…

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In Case You Have Not Been Here

My Wife Fights With Breast Cancer

Cancer patients more into social media than I probably know this from Facebook. I saw it via Tumblr several weeks ago but could not look at those pictures, it reminded me too much of my own bald head. I finally got courage to look today but found the about page too. Yes the pictures are important but I was really impressed with the about page, especially this quote:

“Sadly, most people do not want to hear these realities and at certain points we felt our support fading away.”

Says quite a lot, doesn’t it?

Being Positive–The Cancer Curmudgeon Way

I know my posts tend to be, well, curmudgeon-y. I do find the pink power “you can do this” stuff a little distasteful. But that is not to say I mind all kinds of encouragement type of quotes or graphics or etc.

Here is something encouraging, almost like the “fight” language, for the cancer malcontents.

(Source: chouncazzodicasino)
(Source: chouncazzodicasino)