Wednesday, April 30, 2014

A Patient's Thoughts on Research vs. Awareness

And yes, unfortunately, there is a versus.

I wrote an article for Healthline on this very important subject.

Please read it and let me know what you think.  And, if you agree, please hit the share button and let everybody know.   If I ever wanted anything to go viral, this is it.

16 comments:

  1. Brilliant article, Ann -

    Quoting more Pete Seeger:

    You have a hammer, you have a bell - and you have a song to sing, all over this land (If I Had A Hammer)

    Keep singing your song (a song of truth)...it makes a difference and will keep being heard!

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  2. Thank you for writing this.

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  3. Im 16 years post breast cancer and very fortunate to be healthy. This is very thought provoking reading. I would say that most people who donate during bc awareness month are under the impression their money is going towards research. Everyone should read this.

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  4. BRAVO!!! Sharing straight away....

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  5. Great article!

    For those looking to donate to a charity that devotes its funds to breast cancer research, I suggest the Breast Cancer Research Foundation http://www.bcrfcure.org/about_mission.html. Most of the money they raise goes to research.

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  6. What a wonderful article. I think you are in the ideal position to state the case that early detection does not preclude metastatic cancer. I doubt there would be anyone more persuasive than you because of your experience, your good research and your clear writing style. I hope the article gets wide distribution. It is nice to read something that examines the Pink movement when it is not October. At that time of year, no one is listening no matter how well you put it out there.

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  7. Brilliant, Ann. This is the article I've hoped someone would write for many years. Pink ribbons are no longer needed. It's a perfect example of symbolism over substance. If we aren't aware by now, we're sleep walking. It's time to get serious and use the donations toward making a real difference, instead of lining the pockets of those who make up the board of these organizations.

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  8. Hi Ann - I found your blog after reading the NYT Mag article last October. I'm also metestatic and blog at ChairliftChatter. Yours is the first blog I feel like I can relate to. Your article says exactly what I've been trying to verbalize on my own blog, but you say it much better! I hate October, I'm done doing walks, and I only wear pink the other 11 months of the year.

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  9. Amen! Shared on FB.

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  10. Hi Ann,

    Actually just watched 'my last days' episode with your story, and ended up here. Bravo for writing such A provoking article!
    ...also, not sure if you have heard of the Envita clinic in Arizona... but might be worth checking out (www.envita.com). I know people who have had incredible success there. Best, another Anne (from Canada)

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  11. great article - i shared it! however, i don't necessarily agree with the 'no mammogram' principle... i am, so far, one of the 'lucky' ones. diagnosed with HER-2 stage 2a, and now disease free - with the cancer monster constantly on my shoulder, of course. BUT the only reason i did discover my cancer in time was because my DCIS had spread up the breast tissue toward the clavicle bone and formed a tumor about half way. i felt it. the tumor turned out to be the least of my problems, the bigger one was what was spread throughout my entire right breast. and i could not feel a difference - only a mammogram, read by a VERY skilled radiologist btw, would show anything. so - what about the women who are actually 'saved' by their mammograms? minus the ones that have recurrences down the line, like you have. how many women are saved by the mammos vs. how many ends up with metastasized BC? is there really not a value to mammograms if they do save people? if i had not felt my tumor, my cancer would have spread - it was already on it's way, in a intra-mammary node and towards the nodes under my breast bone, and i would be in a much different situation today. i was 36 when diagnosed, no one would have given me a mammogram until age 40, if i had not already fallen ill by then...
    Having said all of this, i agree with your article and i think that you, aside from being a brilliant writer, is just such an inspiration of power, intelligence, love and iron clad focus. i am happy to have found you, and i always read your writings knowing i will learn something new. thank you! xo

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    1. I often think people misunderstand me. I never said "no mammograms." They are a useful tool. I would not want to do away with them. I think the research clearly shows that we don't need to do them yearly but certainly I would never advocate getting rid of them or suggesting a woman not do one. (Although I do know women who have chosen not to do them for valid reasons and I wouldn't argue them against it).

      What my point is, and I hope I make it clear, is that we need MORE, not less. Mammography is useful for what it does - finding cancer and sometimes non-cancerous disease. But it doesn't do anything beyond that. In today's world, we have newswomen saying "Mammogram saved my life" which is a hope at best, certainly not a truth. I could have said back in the early days that mammogram saved my life too - joke would have been on me. We need to stop the mythical reverence of one small tool in what should be, but is not yet, a vast arsenal in cancer discovery and treatment.

      The world isn't black and white, and we don't have to take away to get more. We can add on. That's what I advocate for. We can have mammography AND we can have research beyond that. We can do it all, the money is there. It just isn't spent properly.

      But when is it ever? :)

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    2. YES, completely agree!! Thank you for clearing that up for me :)

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    3. I'm totally in agreement with you, Ann.

      I also want to add to Lina--you're talking about a diagnostic mammogram. Pretty much no one disagrees with their value. At the center of the debate are screening mammograms. I was diagnosed with TNBC at age 34. Those of us in the under-40 set are statistical outliers. We're not getting the screening mammograms, so when a diagnostic mammogram is used as a piece of the puzzle, we feel even more indebted to the great mammogram. In reality, they're apples and oranges. And, just echoing Ann--most people are not even saying screening mammograms are of no value. There's a conundrum that needs to be addressed so that we can truly measure their worth.

      Betty

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  12. Just want to make one critical correction to your article that in no way diminishes its very valid points. "To everything there is a season . . ." Is from the Bible (Ecclesiastes 3:1,
    King James Version). Peter Seeger did write the song "Turn, Turn, Turn," but not that phrase. Since the phrase, not the whole song, was the point of your writing, the correct attribution would have been to the primary source.

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    1. Thank you! I actually knew he took the phrase from the bible but wanted that song to run through people's heads. I appreciate the correct way to attribute it though.

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