Sunday, September 4, 2011

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.



  1. I would like to add a small point, if I may. Those 2 narratives apply equally to other cancers as well. The real difference in my mind is the lack of hype. I have prostate cancer and am subjected to the same refrains albeit with their own twists. I, too, have been struggling with the outcomes of PCa treatment and recurrence (the politically correct term it seems to me for metastatic disease). And I know others with different cancers and the narrative still is the same - people want success stories and the hype that constantly faces the breast cancer community affects all of us. I've received the same "think positive" comments and I've been told to look at all the folks who "made it". As you point out, it certainly doesn't help our personal circumstances. I read and admire a lot of the breast cancer blogs not because of anything specific to the disease, but more because I note the concordance with what I am facing - the frustration, anger, sadness, and occasional joys that beset all of us facing cancer.

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

    Just what you are doing: telling your story.

    I'm standing up from my seat and applauding to this post. I get disgusted with the "positive attitude" line they try to weigh down all cancer patients with-ignorance. I had a horrible attitude, truth be told. I went out and gave Fireguy (he's my husband) power of attorney. I went out and got all my ducks in a row, so to speak. I put in place everything I could think of. I am still here. Your attitude has nothing to do with surviving. It's OK to have down days, it's OK to cry, it's OK to be afraid. Kick those toxic relationships to the curb, and surround yourself with people you love and do what you feel you need to do. Have good medical personnel at your side and work in a team, as a team, but my case, I have to say - and I'm only speaking for me, the glory goes to God (remember, he can work through your medical teams, too). He is the one in charge of my life. I can't speak for anyone but myself.

    Loved this post, Beth.

  3. Beth,
    This is an outstanding post! It should be on the front page of the NYT, however, I'm not sure "society" wants it's horizons broadened. Those outside the direct cancer experience don't want to know too much about what cancer's really like. People give us "high-fives and you beat it" platitudes because on some level, they believe if they're diagnosed some day, the positive thinking narrative they've practiced on us will be the key to their beating it.

    In some ways, their limited narratives may be similar to how people view women who've been raped. The woman is often thought to have brought it on herself by the way she dressed or acted, or she didn't say "No" loud enough, so it's her fault. Cancer and rape may both be examples of "that wouldn't have happened to me because I'm stronger" mentality.


  4. I have metastatic breast cancer.

    I can only be the person I am. I am not especially brave, courageous, strong or noble.

    I am just a nearsighted flat-chested woman with lousy luck/DNA. I am not the Little Engine That Could. Repeating "I Think I Can, I Think I Can" won't help me over the Stage IV hump.

    Breast cancer awareness month is often an orgy of Up With People stories. This year, I decided I would make my own effort to tell some other stories.

    National Metastatic Breast Cancer Awareness Day is Oct. 13 ( Please join me in getting that word out.


  5. Dan, thank you for adding your valuable insights to the discussion. You are right: this "think-positively" mantra, coupled with the narrative of those who die nobly in the heat of battle against cancer, does apply to all cancers.

    I'm glad this posting and other postings resonate with you.

    My point also includes the fact that breast cancer is often "prettied up," which adds to the "hype" of this cancer, as you said. This makes those with breast cancer feel under greater pressure than ever to perhaps fit into one of these two or other narratives.

    As you well know, cancer isn't pretty, and it is insulting for society to deem it is.

    On the other hand, I've known a number of people with types of cancers other than breast cancer who tell me they wish their cancers, too, could have the awareness campaigns and publicity that breast cancer does. I'm not sure if you feel this way, also. There is certainly an imbalance as far as publicity of cancers is concerned.

    Thank you so much for your candor and willingness to share your experience. I do appreciate it.

  6. Chrysalis,

    Thank you for such nice words and your support. You are very wise for getting all your ducks in a row with the help of your husband. You are so right: it's OK to cry and be sad about a cancer situation -- it's CANCER for goodness sakes!

    If people want to have a positive attitude, that's fine. I just have a problem with society telling us to have a positive attitude when we feel like crumbling.

    Thank you for your response and for reading my posting. Luckily, we have so many bloggers who tell the truth, but everyone's truth is different.

  7. Brenda,

    Wow, the front page of the New York Times?! That is a high compliment, indeed. I appreciate your comments and loyal readership.

    Your insight about the similarity between cancer and rape are spot on. Thank you for pointing this out. There's a lot of the blame game going on, especially when it comes to women. It's really sickening.

    Thanks for reading and commenting. I always enjoy hearing from you.

  8. Beth,
    Society prefers to deny and avoid the truth about a lot of things because it's easier. Cancer is really scary and people choose coping mechanisms that make them feel better, not the cancer patient. Sadly, even cancer patients often get caught up in this "glossing over" of cancer and try to live up to some impossible expectations. Cancer is exhausting by itself, we don't need to add to that burden. I guess we just keep speaking up like you are doing so well here. Thanks for writing this, Beth.

  9. Dear Beth,

    Thank you for your kind response. I realized in my attempt at brevity that I omitted a more proper opening. I agree very much with the other commenters. Your post meant a lot to me because it so clearly articulated what we all feel. And, I do agree, there are many that do wish that other cancers had the awareness that Komen and others have brought to breast cancer. I think, considering the concerns of the metastatic breast cancer community and others, perhaps it's timely for those of us at greatest risk to work towards a common goal of more research funding for advanced disease. While we don't quite have the same visibility, within the PCa community there are the same arguments about awareness and screening; but for those of us with advanced disease and at greatest risk, those arguments and concerns are at best moot. Our only hope, collectively, rests in a more aggressive research program. And if not for us, then for our children and grandchildren who are already at greater risk of contracting these terrible, life changing diseases.

  10. Dan, your first comment started just fine! You express your points poignantly. I agree that more aggressive research is in order. Everyone seems to get wrapped up in the "feel good" stories, that people with metastatic disease are too often forgotten.

    Thank you for revisiting my blog.

  11. Ihatebreastcancer:

    Thank you for that excellent comment. Yes, I totally get what you're saying about the "Up With People" stories.

    People do need to know that those afflicted with cancer are no more brave or noble than anyone else. It's such a myth. Thank you for your candor and for taking the time to leave a comment.

  12. Nancy, as usual, thank you for your loyal readership. I think you are right on target when saying that even people with cancer have this burden of "glossing over" cancer or, as you've said in your terrific blog, "doing cancer right." It is too much of a burden, and no two experiences are the same.

  13. ihatebreastcancer

    Oh, and I plan to help you get the word out. I will be visiting your site soon.

  14. Hello,
    I have a question about your blog. Please email me!

  15. Beth, I'm so glad you're writing about this topic. I agree that it just feels wrong to assume passivity in a cancer patient who "loses" the battle. My mom did everything she could to survive uterine cancer -- multiple surgeries, showing up for every chemo & radiation appointment, even when she felt like hell, eating healthy foods when she had no appetite or tastebuds, etc -- but it wasn't "enough" and she died after a 6-year battle. Her battle was unsuccessful but certainly not for lack of effort. Thanks for writing so eloquently about this issue.

  16. LOVE this! I became fascinated by cancer narrative after reading "The Wounded Storyteller". The author, Arthur Frank believes we are more than mere “victims” of a disease but that we are “wounded storytellers” who tell our stories to make sense of our suffering and thereby find healing.

    When I started to invite guest writers onto Journeying Beyond Breast Cancer it was precisely because I wanted to share the real voices of cancer in all its forms - the good, the bad, and the ugly. Not everyone will share your particular version of your cancer narrative, just like the disease, we all experience it uniquely, but we can all find room in our hearts to listen with compassion and understanding to that story, and find nuggets of wisdom and truth in it.

  17. Beth, a great post and I thank you for opening our eyes to the facts.
    I am making every endeavour to have the 'ugly' side of cancer told; it is not easy. Nobody should have to live with what I do, and particularly as it is thought to have started as radiation necrosis.
    My understanding is that for the 60% of people that are treated successfully, there is 40% that are left to live, or die, alone

  18. Great post Beth.
    I have always been "sassy" I was atoosassygal when I created my first Email account 15 years ago.
    Now....Now I don't feel so sassy.
    I am being told all the time how strong I am.
    What choice do I have?
    If I'm going down it's going to be fighting.
    I am also hearing a lot about positive thinking.,,,
    While I know you HAVE to stay positive....being positive is not going to cure me.

  19. Thank you for reading my post and commenting, Debbi. The truth is, as you know too well, that cancer is humbling -- not sexy and sassy. We have to stare mortality in the eye, not to mention suffer unspeakable horrors.

    Yeah, and the Stay Positive mantra is old. It's great to have a cautiously optimistic attitude, but people need to get the notion out of their heads that positivity = cure.

  20. Excellent post, Beth! Broadening the narratives might come if enough of us in the blogosphere point out that we represent a wide spectrum of perspectives and personas. On my rocky road through breast cancer I've encountered both the views you mentioned, and neither one set well with me. I'm not brave with a positive attitude and I'm not "you poor thing."

    You are so right that the disease is neither sassy nor sexy. Our collective voices speaking and writing about this important topic are the only way to dispel the myths that prevail in our pinkified society.

    Stay well and keep writing.

  21. Jan,

    Thank you so much for commenting and continuing in your loyal readership. I have fallen behind in reading the blogs I love so much -- including yours.

    I love what you said about people afflicted with breast cancer having a wide array of stories and experiences. No two experiences are alike, and no two breast cancers are alike.

    Keep well yourself. I'll be visiting your blog soon!

  22. Thank you s o much for this informative blog!!


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  24. Kaney,

    I'm not sure whether the purpose of your comment is to promote your product or simply provide inaccurate information.

    Think about it: if tea was a known cure for cancer, don't you think everyone would be drinking it and therefore everyone would be cured of cancer? Many tea drinkers get cancer anyway.

    As far as cancer being a complex, devastating illness, this is not a new insight.