Wednesday, September 30, 2015

Breast Cancer Deaths by Year. Simple Raw Numbers.

Here is a chart to start Pinktober:

 Overall Breast Cancer Mortality by Year - USA*
Year Source No. of Deaths
2015** Cancer.org 40,730
2013-2014 Cancer.org 39,620
201l-2012 Cancer.org 39,520
2009-2010 Cancer.org 40,170
2007-2008 Cancer.org 40,460
2005-2006 Cancer.org 40,410
2003-2004 Cancer.org 39,800
2001 Wiley Online Library 40,600
2000 TCSG.org (ACS) 41,200
1999 Cancer Journal for Clinicians 43,700
1998 Cancer Journal for Clinicians 43,500
1997 SEER 44,190
1994 Wiley Online Library 46,000
1992 CDC 43,063
1991 CDC 43,582
1988 New York Times Article
(indicates that the average in the mid-80s was 40,000)
40,000
1970 Wiley Online Library 30,100

**estimate

What is this chart, you ask?

For years, patients, advocates and activists in the metastatic breast cancer community have shared this fact: 40,000 women per year die of breast cancer, a number which hasn't changed much over the years.  Each one of those 40,000 represents a beautiful life, somebody loved, and we all feel sadness that number is static.

We all say it, but is it true?  I decided to find proof.  Like with the 30% of early stage progress to mets number I recently questioned, I got curious.

I was surprised to find there was nothing in existence that outlined this, so I dug around and created a chart myself.

Apparently, these raw death numbers don't mean much to epidemiologists, who are mostly trying to tease out underserved populations.  Like the other number I questioned,  it just doesn't seem to be important to anybody but those of us living with the disease.  We will likely never know the number who relapse after an early-stage diagnosis.

It's always been my feeling that as laymen we shouldn't rely on statistics and numbers too heavily. The old phrase "There are lies, damn lies, and statistics" is true.  They rarely mean what we think they do (as in the famous 1-8 statistic).  The same numbers can be used to "prove" different things,  and are probably best left to mathematicians. However, in this case, I know something else - that too many women are still dying of breast cancer.  These 40,000 are people, and I have known a few of them.

As for the chart - it's hard to go further back than I have, and sources get pretty shaky beyond 2003. The US does not have a national cancer registry.

What's the point of knowing this?  Elementary school kids wear breast cancer bracelets, and college girls do manual breast exams, women get their mammograms. If a lump shows up, their first thought is breast cancer - in fact, in the course of keeping this blog I've been contacted by numerous 13 year old girls terrified they had cancer. Awareness, I contend,  has been achieved.  It was once an important concept, back when breasts were hidden and disease was shameful, but times have changed.  The intense focus on "awareness" has not.  It's like the temperance movement, an anachronistic idea in today's times.

I'm not saying one should not be screened.  Of course finding breast cancer early may give you a better shot at survival - but it also may not save you.   Studies are showing that the idea of early detection leading to a cure is not as hopeful as once believed.  A scalpel to cancer at the perfect moment should stop it in its tracks, but we've learned the biology is too complicated. Like we once believed you had to remove the breast, the pectoral muscles and all the lymph nodes in a disfiguring surgery called a Halsted mastectomy, we now know that removing only the cancerous lump may be enough. Halsted mastectomies are not done anymore, and we know that even a small cancer can metastasize, sometimes years after original diagnosis and treatment.  

Times change.

But one thing hasn't changed.  40,000 wives, mothers, sisters, loved ones and friends die of breast cancer - each and every year.  Far too many.



***


I wondered how to deal with Pink October this year.  Years past, I highlighted the insensitive advertising, boob focus, and misleading marketing, giving many what they wanted - attention.  I was sarcastic and angry - I fired off too many angry emails that effected nothing.  This year, I am going to be positive.  I'll be giving people my truth, things to think about, and ways to effectively approach this month.  I'm changing my focus too - anger is useless.  The likelihood is in our lifetime Pinktober won't stopped.  Rather than fight each company who wants to capitalize on our disease, we must instead try to get them to give where it is needed, and have our friends and neighbors understand a different point of view and what is needed to solve the problem of breast cancer. And, we need ammunition, although perhaps not pink bullets.  Wouldn't it be amazing if people realized awareness has been achieved, and it's time to move to Phase 2 - a cure? What if Komen decided to give their multi-millions to research instead of creating more awareness pamphlets? Truth is, they aren't going anywhere, but maybe we can convince them to spend their money in a wiser way.



*My disclaimer is that I am a writer and a creative type.  Numbers, as Barbie says, are hard.  My son, who is majoring in math at Caltech, might disagree with that, but he is not here to proofread this for me..   If you see that I've transposed something, let me know.  But for those of you who like to to use that 40,000 number (and I know who you are!) here is something link to. Please use it responsibly and remember to keep it in perspective and understand it is not a definitive answer of anything - other than we are still dying.




20 comments:

  1. Hi Ann, it looks like these numbers are for the USA or N. America, rather than the whole world?

    Glad you're going positive this year and looking forward to reading what you share.

    warm wishes, Stephanie

    ReplyDelete
    Replies
    1. Yes, just the US. I clarified, thanks for pointing it out. I tried to access the WHO database to get worldwide figures but you need special software and need to know a variety of diagnostic codes. Too much for one woman sitting in her bedroom. :)

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    2. Hi Ann, thanks for clarifying. If your number crunching son sits down with you, I hope you'll look at mean and median life spans with mbc too.

      Back when I was dx with mbc, it was 23 months. I think it's up to 30-something, but for many it's so very fast, like a wildfire.

      I've the slow burn, but it's taken down so much debris.

      No one is truly average...looking at big numbers of participants and outcomes, statistics, isn't a crystal ball, just a best guess about any one woman's fate.

      Greetings from across the state,
      Stephanie

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  2. Look at NCIC and their SEER charts for more information.

    ReplyDelete
    Replies
    1. Ann, don't know if you've seen this yet

      http://kff.org/state-category/womens-health/cancer-statistics/

      warm wishes,
      Stephanie

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  3. My friend died of breast cancer this year (2015). Her death certificate states that she died of heart failure due to anorexia. She died of breast cancer.

    ReplyDelete
    Replies
    1. I have talked about this a lot. Have you seen the death certificate? Many have several lines so they can put more than one cause of death. If they didn't include breast cancer, that's just horrifying. I suspect it's not all that rare though, and shows how when we play with numbers we really are not getting accurate.

      I'm sorry about your friend.

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  4. It is pretty sad that the number of deaths hasn't changed in 33 years! We need to focus on a cure not prevention

    ReplyDelete
    Replies
    1. It's hard to prevent something when you don't know what the cause is! And, a genetic mutation may be unpreventable....

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  5. The number of deaths staying constant in relation to a rising population is somewhat positive.

    ReplyDelete
    Replies
    1. Only in relation to the number diagnosed, not population. I'm looking into that now.

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  6. Some good news - a cousin who used to support Komen just posted on Facebook that people need to check out where they donate and Komen is not a good choice. Person by person, the message of "think before you pink" is spreading. Maybe if enough people get the message, research rather than awareness dollars will go up and we will get better treatments or even a cure.

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    Replies
    1. Awesome. I do think more and more people are waking up to the fact that Komen doesn't really offer much in the way of help. There are charities who do a better job. I'll be posting about that soon.

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  7. As a survivor you could go mad with every breast cancer ..drive...this is what I do I only support who I want to and limit the amount of causes I get invited to..I love a girls night out . That being said the statistics that you posted are sad...but the truth. When I was diagnosed everyone I had known with breast cancer was gone...I think we are lving longer due to better treatment options not a cure but time and time is a wonderful thing !

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  8. Ann, as you know, dealing with Pinktober is trying at best. I've also dealt with it differently from year to year. I get angry, but I also try to not think about it as a defensive mechanism. This year, I choose to celebrate October as the beautiful month it is in the Midwest, with leaves changing color, rather than a pink-washed month. I want to take back October. The number of deaths are astounding, and the fact that they haven't decreased is appalling. The 30% statistic scares me, and it is a challenge to keep PTSD at bay when I hear this truth. I expend a lot of energy just trying to hang in there and focus on positive things. It's so difficult. Thank you for providing this chart and, as always, informing the public.

    ReplyDelete
    Replies
    1. Beth, I think you are being smart. Enjoying nature, life around you, is the best thing to do. I am not going to focus a lot of negative energy this year either.

      You'll be happy to know that 30% number has been disproven. It was never a good number but people latched on to it and it became a mantra, but was based on nothing. People keep saying it but researchers actually believe it's much lower. However, we'll never know since we aren't tracked that way. But maybe it helps you to know you probably aren't standing in front of a bullet the way you may have thought previously *hugs*

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  9. You are sounding like me. :) I have decided that I want to increase funding for metastatic research in as many ways as possible, but I am tired of anger.

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  10. Yikes! That's very scary, the fact that the numbers have been so consistent. I would be curious to know the numbers in third-world countries such as mine, the DR, where most of my family lives--there's a huge lack of resources. I am the second "survivor" in my family but I live in the U.S., and the other practically lives at the doctor's office. The science happens in places like the U.S., and as long as we're having deaths here, it's probably worse in countries like mine. It makes me sad to imagine the other numbers.

    I've always said we are doing things backwards. If we can figure out why cells spread, then we would have solved a huge part of the puzzle. Not the other way around-- early-stage bc doesn't kill.

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  11. Those numbers are, in fact, remarkably stable. I have to wonder how they figure in on a per capita basis. I'd expect the aging of the Baby Boomers to play a role in this. But, that's just conjecture. I'm so glad you're still with us and pray for your continued stength and relative good health.

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