Uneasy Pink

So. Tuesday’s post was kind of heavy, huh?  Sorry about that.  You know I’m usually not so numbers-oriented around here, but this weekend’s conference really shook me.  I was surprised by … the facts.  Particularly the facts about metastasis.  I thought we were making progress.  I thought people were living longer.  Since the last 20 years has shown a huge increase in the survival statistics for inflammatory breast cancer (the five-year survival rate has increased from just 2% to about 50%), and we hear so much about the great increases in those with local disease (98% of those with localized breast cancer now make it to the 5-year mark, says the National Cancer Institute), I guess I just extrapolated to the conclusion that early detection IS saving lives, and that people with cancer WERE living longer.  Maybe you did too.

But the ugly truth is that almost the same number of women with breast cancer die every day in the United States as they did 20 years ago (and I apologize to my international readers, but I only have U.S. stats for this one).  Twenty years ago, 119 women died of breast cancer every day.  Last year, the number was estimated at 110.  We are finding lumps and cutting them out, cutting off women’s breasts, poisioning ourselves with chemo, and offering ourselves up to be burned with radiation, and still, 110 women each day still die of breast cancer in this country alone.

Avastin, the “miracle drug” that I hoped for last summer, extended the average woman’s lifetime by three months.  Three months.  It was hailed as a breakthrough, and everyone wanted it — but at best, it extended life by [an average of] three months — and clinical trials showed that the “side effects” included things that no person would choose to have if they could help it, and so its full FDA approval for breast cancer was not rushed through like its preliminary approval.  It wasn’t enough.  But oh, the outcry!  Do you know why?  Because this $90,000 drug held out the potential, the promise, of three more blessed months on the planet.

We have to do better.  I’m not satisfied with the fact that nine less women die each day of breast cancer [and so many more die here and worldwide from the other cancers that plague our planet].  What about the other 110?

Uneasy PinkYesterday, fellow #cancerrebel Uneasy Pink wrote about the seeds of cancer and asked her readers a very important question posed at the conference that helped me look at advocacy and awareness organizations in a very different way.  It’s exactly the thing that has bothered me before about pink, and pretty ribbons, and breast cancer bouquets that donate a dollar to “the cause.”  Read her post, please, and let’s talk about this a little more — because today there are 110 more women who cannot.

17 Responses to Uneasy Pink

  1. Judy says:

    Thanks, once again, Susan.

    Disturbing stuff. I hate this.

  2. Delora says:

    In 20 years, 9 less women per day are dying of breast cancer. But how many more women per day are being diagnosed with breast cancer? If in 1980, 150 were being diagnosed and 119 were dying, but in 2010 400 were being diagnosed and 110 were dying, I’d find that a huge improvement. Yet I will still mourn for those 110.

    I haven’t seen any stats about whether the increased numbers of cancer diagnoses are due to increased screening, but I’d suspect there’s more going on than just detection.

    Great post by Uneasy Pink.

  3. Darryle says:

    Both are wonderful posts and sadly this is not new information for me. I so admire and applaud your efforts to change the reality of this hideous epidemic.

  4. Right on Susan! Accountability, accountability, accountability. Great post by Uneasy Pink. The wheel that squeaks loud gets the grease, and we must demand!

  5. Lynn says:

    Reading The Emperor of All Maladies really opened my eyes to the progress we have made and the harrowing treatments endured to get us to where we are in treatment today. When oncologists talk of extending life, they are thinking months or even weeks, while we the patients are thinking years, and 10 and 20 years at that. I try to remain hopeful and optimistic, but can’t help but think this horrid disease is just picking us off, one after another.

    PEI, Canada

  6. Oh, Susan, I don’t know what to say. Those numbers do suck. Thinking of you,

  7. Katie says:

    Thank you Susan.

    Katie

  8. The numbers don’t tell the whole story… My DH is a statistics weenie — he always tells me to look beyond the numbers.
    I have to agree with Delora. You need to look beyond the numbers…
    LBC

  9. Catherine says:

    Susan, I’m so glad you’ve connected with the National Breast Cancer Coalition and are blogging about what you’ve been learning and doing.

    I wonder – do you have any info about whether other countries are doing the kind of trials you’re advocating for – directly on metastisis?

    I’m particularly interested in an entirely different health issue (scoliosis), and finally found an effective treatment that was developed in Europe, has been used there for decades (helping people avoid spinal surgery) and only recently have one or two individual practitioners brought it to the U.S.

    Thinking about you, and about what you wrote here I wondered what kind of research is going on in the rest of the world on metastisis. I know that’s a huge question.

    Lots of love to you and your family. Hope you have a great weekend.
    Catherine

  10. Deb says:

    That is the problem with so many cancers, they have already metastasized before they are diagnosed. The other problem is that cancer cells are not all alike, even in a single tumor they vary a great deal which makes treatment more difficult as well.

    The other cancer that kills more women then breast cancer every year is lung cancer, a mostly preventable cancer. Stop smoking.

    We also need to figure out what starts breast cancer and find a way to prevent it.

    You’re an amazing teacher, although I’m guessing that you would have preferred a different subject to teach. Take care.

  11. NYFriend says:

    Yikes. Freakin’ scary as all get out.

  12. JoC says:

    These posts havent scared me off. They just have me thinking in a different way! Happy mother’s day!

  13. Anne says:

    Did they give any kind of breakdown of the demographics of those 110 women? If the average age of death has got older then something has been achieved. Almost all cancers have higher rates in the over 70s and older people often have other health problems that mean they can’t tolerate treatments the same way a younger person can. What I’m trying to say is that everyone dies sometime, if you save a woman from breast cancer in her 40s (like my mum) then she’s going to pop up on a statistic for whatever kills her instead of breast cancer, my guess is that some of those 110 have been saved from something else only to pop up in the breast cancer stats instead. So any improvement isn’t just measured by total numbers, but also by the shape of the graph of the ages of those numbers. That’s not to say we can give ourselves a pat on the back that we are doing enough, from what you’ve said, research into metastasis is in a bad way so there is still an awful lot more work to be done.

  14. HUGE EXHALE.
    Because it is this lack of progress that makes those of us who have dealt with other cancers so upset, and has been so frustrating about talking to all the rah-rah people.
    We’re all telling our truths, but numbers give them context and provide a larger truth.
    Honestly, I’m not sure where the numbers leave me in terms of advocacy, which is why I’ve been so lukewarm about that for the past several years. I’ll follow your feelings about it closely, perhaps you can lead me to my own personal DO SOMETHING spot.
    X
    Supa

  15. The emphasis on improving awareness puts all the responsibility on the person with cancer, implying that if it’s found too late, it’s her fault for not being vigilant enough. There has always been a dearth of research in part because it is so complicated as it would also involve researching environmental causes which are monumental and very political as cancer-causing chemicals in the environment are often produced by powerful and large companies who want the attention focused elsewhere. It would take a lot more money to prove certain chemicals in food and air are causing cancer than simply paying for education and awareness.

  16. magpie says:

    the pink thing makes me crazy too. because it’s such a deflection. it’s not pretty, it’s not pink. love you for speaking out.

  17. nancyspoint says:

    Susan,
    Like you, I am not satisfied either. We must keep talking about this in hopes of bringing meaningful change.

%d bloggers like this: