The Cancer Narrative

Many don't like the truth about breast cancer. So, in order to avoid or deny the ugliness of this disease our culture has invented at least two mythologies -- two narratives if you will -- about those afflicted with breast cancer.

During August 29's #BCSM Twitter chat, one participant brought up the insightful point that when it comes to breast cancer, people only want to hear and see stories of strong women who beat the disease. Oh, and lots of pink ribbons.

I completely agree.

But there are yet other pervasive breast cancer narratives that are equally noxious -- the myth of women who die of breast cancer quietly, courageously, and nobly, as well as the myth that those who died are somehow to blame for their deaths.

Society glosses over breast cancer more than any other cancer. There's no other cancer -- whether uterine, ovarian, testicular, and so on -- that gets "prettied up" the way breast cancer is. Scores of women are losing their lives, and all many people think about is to pinkify and glamorize breast cancer.

Breast cancer is considered the sassy, sexy kind. I had that cancer. It sure didn't feel so sassy and sexy going through this. I lost also friends to cancer, and it was anything but pretty.

Here are two types of breast cancer narratives pervasive in our culture:

The narrative of triumph and the hero: When I tell people that I'm a breast cancer "survivor" (for lack of a better word), they view me with awe and admiration. I've heard, "Good for you!" and "You beat cancer" more times than I can remember.  As if my survival were totally in my control. As if my deceased friends fell short when it came to fighting breast cancer.

Truth is, whether a person "survives" cancer is partly due to random luck, not because the "survivor" fought harder than the person who died from this disease. The "survivor" does not have more value than someone who doesn't survive.

The narrative of the person dying quietly, courageously, and nobly.  Our culture wants to believe those people who die of this disease simply passively die. These breast cancer "victims" are either put on a pedestal for dying quietly with great courage and acceptance (If you don't believe me, just watch the movie Love Story, the tear-jerker responsible for the nonsensical line "Love is never having to say you're sorry") or blamed for their own deaths because they didn't think positively enough or they didn't fight hard enough.

Nothing could be further from the truth. People who ultimately die fight just as hard against the disease as those who survive.

What's lacking in our mainstream culture is the acceptance of diverse narratives. No two breast cancer experiences are alike. But society often typecasts those of us affected by breast cancer in one of the two aforementioned narratives.

And typecasting is the antithesis to truth-telling.

What do you think can broaden society's exposure to the wide spectrum of breast-cancer narratives out there?

Feel free to share your story. Each story shared will help dispel the myths of the brave warrior or noble sufferer.

 I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. Please feel free to subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

A Curve Ball and The No.1 Exploited Disease

Lately, I've been feeling exploited.

As someone who tries to empower others to advocate for their own medical needs and health, frankly I get pissed off when I see companies exploit fear -- particularly as it relates to women -- to sell a product or service.

Take the "fitness" business Curves, for example. A few years ago in October, I was waiting for my train, when a woman came up to me with a flyer saying this flyer's message was in support of breast cancer. I took it and chatted a bit with her, telling her I was a survivor and how much I appreciated the support. After she left, I read the material.

I was horrified.

It was an advertisement for Curves, and the message basically said that getting a workout would help stave off breast cancer. I promptly threw it out, but I saw all these people at the station reading the same flyer as I had been. And I wondered how many of the women got sucked into Curves' message: "Come to Curves, and you won't get breast cancer."

How odious.

Companies of all sorts like to cash in on breast cancer. It's the cash cow of diseases. In my previous post, I mentioned how much it meant to me that there was this outpouring of support for the disease that would've eventually killed me had I not caught it earlier.

But there's another side to this outpouring. Only in October do we see pink ribbons galore on everything -- from frozen dinners, to balloons, to pins, to yogurt, to cookies, to....

I'd prefer fuschia ribbons, thank you very much. And I'd prefer that companies stop exploiting women by making them feel guilty for getting breast cancer or making them feel they can prevent it just by purchasing a product or service.

Disseminating the truth. And that's why throughout the year, and especially throughout October, I get annoyed because it's like breast cancer doesn't exist during any other month and women are constantly being manipulated and exploited. Hey, I was diagnosed in January. Happy New Year, and January should be my breast cancer awareness month.

I think I'll buy myself a pink Barbie doll. Do they have the Double-Mastectomy-with-Reconstruction Barbie?

So in honor of breast cancer awareness month this October, I decided to share some truths that might make some feel uncomfortable, but unlike Curves, who exploits women with its lies all for the big bucks, I'm really vested in helping people.

1. Mammograms are a good tool in detecting breast cancer, but not for women with dense breasts, which includes me and a vast array of others that will slip through the cracks.

2. Many young women get breast cancer, but many doctors falsely reassure them by telling them they were "too young to get breast cancer."

3. Working out and eating right are excellent lifestyle choices. They may help prevent cardiovascular problems and control/prevent diabetes. They may help you lose weight.

They do not prevent cancer.

4. One out of 100 men will get breast cancer. Men with breast cancer are really at a disadvantage. With all the focus on women, men get short shrift in this disease. I would love to see more support groups for men.

5. Breast cancer usually occurs in women with no family history of the disease.

6. Most women who get breast cancer do not have the BRCA1 and/or the BRCA2 gene(s). I didn't.

7. MRIs and ultrasounds are better diagnostic tests for women than mammograms.

8. If you get a mammogram, ask the technician AND the radiologist if you have dense breast tissue, and then get the copy of your X-ray film and look for yourself. If their answer is "yes," and the film looks all white, you have dense breast tissue, and your mammogram is rendered useless.

9. No, tofu and other soybean-based products do not cause estrogen-related cancers to creep up.

10. Support groups are great, but many participants will have weird ideas about preventing a recurrence or "curing" cancer. There is no cure.

11. Go to doctors regularly and, if you are younger than 40, insist on a mammogram and other diagnostic tests anyway. You are not "too young" to get breast cancer.

12. Live your life the best you can, and don't allow Breast Cancer Awareness month exploiters or various people in the media or support groups to inform you with nonsense.

Check out this article that I got from a wonderful breast cancer advocacy blog http://beyond-breast-cancer.blogspot.com/


http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/sick_of_pink/?page=1


Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.