Susan Love: Collateral Damage

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

With all the outrage this week about calling risk reduction practices for LE "myth", Susan Love has held that position as well. She and I exchanged emails about her refusal to support them, based on lack of "evidence". And yes, the studies have not been done, for many reasons, but as we've discussed, the clinical evidence supports them, and knowledge is power. As Outfield wrote: the practices are more onerous to physicians than patients.

So, my LE therapist told me to read about Susan Love and her struggle with leukemia in the NY Times, and this is what I found:

http://well.blogs.nytimes.com/2013/02/18/susan-loves-illness-gives-new-focus-to-her-cause/

Before her diagnosis she said: “The only difference between a researcher and a patient is a diagnosis,” she told the crowd. “We’re all patients.”

After treatment:

While Dr. Love has always been a strong advocate for women undergoing cancer treatment, she says her disease and treatment has strengthened her understanding of what women with breast cancer and other types of cancer go through during treatments.

“There are little things like having numb toes or having less stamina to building muscles back up after a month of bed rest,” she said. “There is significant collateral damage from the treatment that is underestimated by the medical profession. There’s a sense of ‘You’re lucky to be alive, so why are you complaining?’ ”

I wonder how she feels about behaviors than can reduce the risk of collateral, iatrogenic (doctor caused) damage due to cancer treatment now? Sometimes you have to live it, to understand it.

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Comments

  • cfdr
    cfdr Member Posts: 549
    edited March 2013

    I haven't heard about this LE myth discussion. Do you have a link?

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  • carol57
    carol57 Member Posts: 3,567
    edited March 2013

    It's here in our LE forum; look for the topic about 'article attacks risk reduction' and you'll see quite the discussion.

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  • Marple
    Marple Member Posts: 19,143
    edited March 2013

    Here it is~

    http://community.breastcancer.org/topic_post?forum_id=64&id=801050&page=1

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    I do not have lymphadema.

    Although I do agree with the statement that women's fear of lymphadema far outweighs the actual risk of developing it, if a woman decides to adopt risk reduction practices that is her choice.  If she doesn't want an IV or a blood draw on her arm, what is the big deal about putting the IV or drawing the blood from her foot?  The IV fluids will still reach the bloodstream and the blood will still be the same, and the patient's wishes will have been respected.  It's a win-win situation for everybody.

    Perhaps someone should ask these doctors who don't "believe" in lymphadema or in risk reduction practices, would they still hook up a blood transfusion for someone who has stated that - because of religious beliefs - they cannot have a blood transfusion simply because they don't share those religious beliefs?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited March 2013

    This type of thinking by physicians, reminds me of my older dd's pediatrician . She had some fixed ideas about children,their development and their behavior. She had no children at the time. Once she had children she was a much better and realistic pediatrician.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2013

    My daughter is having the exact problem with a pediatrician who has no children and has rigid ideas about parenting and child development.

    Wouldn't wish cancer on anyone, but funny how Susan Love was adamant with me that she couldn't endorse risk reductions because of the lack of studies, and now she understands collateral damage and the "shut up, we saved your life" attitude of dismissal.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2013

    Reminds me of an article I once read about a famous British child psychologist who wrote, "Once I had five theories on child rearing and no children, now I have five children and no theories."

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    ruthbru... LOVE IT!!!

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2013

    I truly don't understand these people's beliefs about risk reduction and LE. I don't understand why they WOULD NOT want to help reduce LE. Why would they NOT WANT to help.

    What is the big deal with practicing risk reduction? Why do they insist on being so arguementative?

    I think the better choice would be to practice risk reduction to cut down the risk of getting LE. What harm will it do? Sure IV's and blood draws in my feet hurt(and btw, a 1% Lidocaine solution to the part of the foot where they are going to put the IV takes away the pain), but only for a short amount of time.It really isn't that big of deal to get blood pressures on the leg LE could last forever.

    Sounds to me like they are like Jerry Springer....just in it for the fame and money.

    People in the medical field are there to help us, do no harm. These people sure are going to be doing harm.

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    What harm will it do?

    I'll tell you what harm!  It may knock  a few of them down a  couple of pegs and it may take some ('medical")  ppl  an extra few minutes  ( tsk tsk)

    This is just shameful!

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