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  • hopeful82014
    hopeful82014 Member Posts: 887
    edited February 2015
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    Hey, it's not just o.k. to rant, it's a good idea. IMHO.


  • bobogirl
    bobogirl Member Posts: 2,083
    edited February 2015
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    LA Star, I believe in you! You will become a junk-punch expert!

    I think people's attitude regarding bc -- 'you got it all' and 'bc is 100% treatable,' etc. -- is because they don't want to spend time or energy on people. Specifically, on women.

    I don't know if I'm being clear here, but women take care of themselves, ask for very little for themselves, and take care of others, generally speaking -- when that stops, and when a woman needs help, for instance, taking care of herself, some people do not like it.

    And when those people say these awful things, I think it's deliberate in many cases -- it's just indirect. It's their way of saying, 'Stop talking about yourself, I am not going to do anything for you -- shake it off and start doing things for me again.'

    Tired, so I'm not sure I am making my point here. Beachbum, by the way -- you rock!

  • graceb1
    graceb1 Member Posts: 56
    edited February 2015
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    Whenever somebody tells me the bus analogy all I can think is that they aren't seeing the bus aiming straight at them from 15 feet away and you wonder if you'll be able to dodge it this time, get side swiped and hospitalized or get run over. Feeling a bit run over today.

  • RaiderGirl
    RaiderGirl Member Posts: 235
    edited February 2015
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    I just recently got the

    " The #1 killer in the US is automobile accidents, not cancer"

    Ok, but I drive, ride AND have cancer. We dont get to trade one for the other.

  • MsPharoah
    MsPharoah Member Posts: 224
    edited February 2015
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    Well, now bobogirl, you have hit a big nerve with your latest post! I have to warn everyone that I am a hard driving feminist from the 70's....just can't give up the fight, despite progress in the last 40 years, so I hope not to offend. Women have always been marginalized and sexualized. I am very aware of how I was socialized....be nice, be attractive, don't make waves, don't ask for what you want or need...that just isn't feminine. When I finished chemo and got the guts to go our without my wig, I realized that noone really notices old ladies anyway....why was I self conscious????

    I raised one ball buster of a daughter and I am very proud of that! Let the cycle be broken.

    I really wonder about any woman who would sexualize another woman with comments about getting new, perky boobs. Even before I was diagnosed, I would never think that there was any silver lining to having cancer, much less suggest to someone that there was one. Those women need a junk punch....or be forced to work as some guy's secretary!!!

    When I am faced with a discussion about "how am I doing", I always tell them (or remind them) that there is NO cure for breast cancer. I know it hurts for loved ones to hear that, but I think that is the message we need to be putting out there regardless of our stage or health status.

    Beachbum....you have great advice for the mistreated. Yay for you.


    MsP

  • RaiderGirl
    RaiderGirl Member Posts: 235
    edited February 2015
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    Finallyme53

    Your post p*ssed me off. I mean the things people said to you. I have had people tell me that I ought to just have these two defective boobs lopped off and replace them with new one. I tell them to goggle images of "breast reconstruction after mastectomy" then look me in the eye and tell me its the same thing.

    The world does not understand that breast RECONSTRUCTION is not breast AUGMENTATION . BC survivors simply get to wear the prosthetic under their skin instead of in the bra. BC survivors either have no aerola/nipple or surgically created one. BC patients have scars that a cosmetic breast surgery patient would never have. A BC survivor loses pleasurable sensation in the breast. AND add to all the above, the continual fear of reccurance.

    Don't misunderstand me, I would not hesitate to have mastectomy if an MD said that was the correct treatment for my case. I respect the decision of all women that choose that route and I am grateful that the reconstruction field has progressed so much. I have seen amazing work. But please folks out there DO NOT act like mastectomy is a walk in the park and that we are "lucky" to get new breasts.

    As DCIS not being "real cancer". I am an RN, I read journals and studies ( need to stop this) . I recently read an insanely long article in the Oxford journal of the national cancer institute . To summarize. DCIS is very complex . I will not quote the recurrance and survival rates but surffice to say that DCIS is breast cancer with as many variation, complexities and challenges as all breast cancers. Frankly in some viewpoints it is even more complicated because too much is unknown.

    I send you a gentle hug. RG

    http://jnci.oxfordjournals.org/content/96/12/906.l...

  • hummingbirdlover
    hummingbirdlover Member Posts: 78
    edited February 2015
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    This thread is SO awesome! I can't think of better therapy, it's just what I needed today. You ladies ROCK, thank you! Sometimes we have to find the humor in all of this mess.

  • NatsFan
    NatsFan Member Posts: 1,927
    edited February 2015
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    MsP - found an article the other day on what it would be like if we raised boys the way we raise girls - brings home what you said. http://www.huffingtonpost.com/lori-day/if-our-sons-were-treated-like-our-daughters_b_6698346.html

    I'm with all of you on the "cancer is a gift" thing - bleh!! Unfortunately my "gift" didn't come with a return address.

    On the "hit by a bus" thing - I always have this mental image of a parking lot full of idling buses, just waiting to get their orders. "Bus #193, you have your target - he'll be at the corner of Main and Oak in 20 minutes - GO!"

    Still trying to find a way to work "junk punch" into a conversation - what a great term!!! Winking

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited February 2015
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    Bobo, I think you hit the nail on the head. I'm not saying that's behind all of the stupid, dismissive responses, but I suspect it has a role in many. Almost certainly the Komen's messaging has fed that, with the pinkness and the emphasis on "survivors" and all the social, 'fun' activities associated with BC.

    Ms. P's thinking ties into it, too; I honestly believe that the paternalism of the medical profession has held back the adoption of new protocols and an acceptance of the "cut, poison, burn" approach for far too long.

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited February 2015
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    Uh PINK is a four letter word....................

  • NatsFan
    NatsFan Member Posts: 1,927
    edited February 2015
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    I think Hopeful is on to something. There's a book called "Bathsheba's Breast" that tracks the history of women, breast cancer, and how it's been treated over the centuries by the (mostly male) medical establishment. While reading it, I kept being struck over and over again by how dismissive the medical establishment has been about the concerns of the patients they were treating - attitudes going back hundreds of years. It also made me realize how those of us battling b/c today are indebted to the pioneers of the 60's like Shirley Temple Black and Rose Kushner who put an end to the practice of performing a surgical biopsy under general anesthesia, running a quick lab on it, and if it came back positive, removing the breast then and there. Those poor women went under anesthesia not even knowing whether they'd wake up with a breast or not! As Shirley Temple Black said, "The doctor will make the incision, but I will make the decision." As you can imagine, the medical establishment was horrified at the thought of a woman actually making her own medical decisions!!

    The book is a very interesting read and makes me grateful not to live a couple hundred years ago when mx were performed on women with breast lumps, back when there was no such thing as anesthesia. Surgeons were taught not to let the screams of the patient bother them. Shocked

    It's available on Amazon: http://www.amazon.com/Bathshebas-Breast-Women-Canc...


  • lastar
    lastar Member Posts: 551
    edited February 2015
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    Amen, RaiderGirl! I was explaining my flap reconstruction to a friend recently and she said, "Don't most people just get implants?" Her jaw dropped by the time I finished describing the difference between breast augmentation and breast reconstruction, including descriptions of injuries caused by my local small-town breast surgeon (he overfilled one friend and ripped her pectoral muscle from her sternum, threw a magazine at another woman when she complained about her chronic pain -- I'm hearing rumors of a class-action law suit). So when everyone second-guesses why I went to such lengths for my reconstruction (travel, long recoveries), I sometimes give them an earful. Not that I haven't second-guessed myself every step of the way, but we have to go easy on ourselves for the decisions we make under duress between crappy Option A and crappy Option B. I tell my friends that they think they might know what they would do in the same situation, but you really have no idea until you are faced with it. LOL, like the author of that book on natural remedies who went full-on allopathic when she had her own diagnosis -- classic!

  • RaiderGirl
    RaiderGirl Member Posts: 235
    edited February 2015
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    Friends

    I have to post on the "You look good" comments that some find unsupportive or worse. That comment hurt me as well since I particularly looked like sh*t. that day.

    I just had to ask a friend who in the past has made that "You Look Great" comment exactly what did she mean? But before that I promised her that she was covered by "the cone of safety" which means nothing she says will be wrong. No point in asking for a fact if I then blame the person for speaking her truth.

    She said that for her personally the image of a person fighting cancer is someone who looks ill, frail , pale and weak.She has never known anyone with cancer that looked as well as I did that day. Her own experience with cancer survivors is limited . TV & movies paint a very dramatic image of cancer. Women with cancer in the movies either look like zombies or crazy beautiful. She said she now knows that she probably sees cancer survivors everyday and just doesn't know it because there is nothing outwardly to show it but that did not make their cancer better than others"

    She then apologized if she said something hurtful to me because her intent was the opposite.

    I have to say with all sincerity,I saw real , true compassion in her eyes.

    However, I still cant get past the "its a gift comment"...ever! ( that was another person



  • GG27
    GG27 Member Posts: 1,308
    edited February 2015
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    I have to agree, most folks don't mean anything by saying that we look good. I am stage IV now & almost everyone tells me how good I look, because I don't look like a zombie, grey, pale, skin & bones or sickly.

    Movies & television depictions of cancer patients is all most people can relate to. I don't look any different than I did before cancer, I don't act any different so it's hard for them to believe that I have a terminal illness.

    I sometimes think that people don't believe that my cancer is as serious as it is and I'm hoping that it stays that way for a really, really long time. GG

  • RaiderGirl
    RaiderGirl Member Posts: 235
    edited February 2015
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    GG27

    I am happy that you are looking good and I hope you will be so for a long, long time.

    Maybe its your kindness that keeps you beautiful through it all.

    RG


  • Leah_S
    Leah_S Member Posts: 1,929
    edited February 2015
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    Some of the dismissive comments are because people don't want to have to (gasp!) actually sympathize with you or, even more (NONONO) help you. Sometimes, though, they're not intended to be dismissive - they've bought into the pinkness. BC ain't no pink balloon.

    Leah

  • MsPharoah
    MsPharoah Member Posts: 224
    edited February 2015
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    I think the stupid comments that I have gotten from my doctors bother me more.

    Breast Surgeon...."Don't worry. I am not worried and when I am worried I will tell you to be worried." (Thanks, Daddy!)

    Breast Surgeon...."Your cancer can be cured." (That's true, but you really don't know if MY cancer can be cured, right?... since there is no cure for cancer...or are you the keeper of the secret sauce?)

    Radiation Oncologist...at my final follow up visit. "Congratulations, you are cancer free" (I asked him how he knew that to be true? Another keeper of the secret sauce???)

    PCP...at a normal well visit. "Did your cancer spread?" (He said that as he poked his finger multiple times, awkwardly at my chest)

    Medical Oncologist...notes written on my chart. "Patient continues to be anxious about diagnosis and prognosis." (Thanks for characterizing me as a nut job...why didn't you offer me mood altering drugs?, or better yet answer my questions without me having to chase you out of the examining room)

    None of my doctors ever told me I looked good! LOL

    These are only a few of the inane comments that come from the medical community.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited February 2015
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    I find some of the inanity coming from the medical world even more offensive than from lay people. Physicians, nurses, PAs, etc., really should know better. (I feel like typing that a dozen times - maybe it will magically get through to one or two of them.)

    It's especially unnerving when they whitewash SE, water things down, etc., because it erodes my trust in them. And at this point, I may not have a huge range of options for providers, but no way am I working with someone I don't trust.

    GG - hoping, too, that it stays that way for a long, long time.

  • BayouBabe
    BayouBabe Member Posts: 1,467
    edited February 2015
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    Just thought I would add my "stupid comments" to the list. If only people realized (or cared) that once we hear these stupid things, they are hard to forget.

    My first MO when I was explaining my SEVERE side effects from an AI - 'I am going to refer you to our cancer center psycologist. I think you need to learn some coping skills.' (LAST time I saw her as a patient!)

    From a FORMER friend (she was also a cancer survivor, but not BC, unbelievable) 'I don't know why you let all these reconstruction issues get to you. I don't let MY breasts define me. I am not sure WHAT your problem is. If I would have had BC, I would have just had them cut off and been done with it. Its not that big of a deal.'

    Can't fix stupid, but we can clean house of toxic people.


  • rleepac
    rleepac Member Posts: 193
    edited February 2015
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    As a PA, I'm ashamed to admit that I'm sure I've said some 'stupid' things to my patients. Not just in relation to cancer, but for various ailments...I am human after all. But in all honesty (and sort of defense), each person is different and what might seem insensitive to one person, another might find quite funny and yet another one might not even 'get' the comment. It's really difficult to read people sometimes.

    However, having said that...I'm pledging to be more sensitive to my patients and I'm educating all my PA and NP colleagues that I work with about what having BC actually feels like (emotionally for me) and sharing some of the comments that are definitely NOT appreciated. I am taking the 'more listening and less talking' approach with my patients. For what it's worth, my colleagues are sincerely interested in hearing what I have to say and most of them have realized they have also said stupid things.

    My favorite quote of the day from my friend at church..."you look amazing!" in this incredulous tone. I said "thanks...I haven't started treatment yet."

    Duh! You don't instantly look 'sick' when you're diagnosed. I'm surprised how many people don't get that and think that I look 'ok' therefore, I must not really have cancer.

  • meow13
    meow13 Member Posts: 1,363
    edited February 2015
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    This isn't a stupid comment but it made laugh so I will share. My mom thinks I got cancer because I didn't exorcize enough. Too funny we need to perform more exorcisms on our body. Auto complete can be funny, tell that cancer devil to leave and never come back a special pink crucifix is needed for the ritrual.

  • Ariom
    Ariom Member Posts: 4,027
    edited February 2015
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    I just wish there was a "Like" button here!

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited February 2015
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    Hahahaha....the exorcise thing is a hoot. 

    I have been very blessed with my "team."  My breast surgeon is a good friend and my MO is wonderful--kind, compassionate, brilliant, honest.  I wasn't crazy about my RO (the only male on the team!) but I tolerated him because my MO said he was the best. 

    One comment that really bugged me, now that we're telling all, is "oh, look, you're back at work!"  Uh...I never LEFT work.  I took two days off for each chemo round, worked through rads without missing a day, and for the most part, conducted business as usual.  And I STILL get this comment, 3 1/2 years out from my diagnosis!

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited February 2015
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    Meow, are you going to set up shop selling those special pink crucifixes?

    The sad thing is, somebody would buy them - to give to friends who're newly diagnosed. ;)

    The breast care center where I was dx. has - for free - neon pink wrist rosaries (chaplets) that are made of some sort of silky cording material. Now, I think they're a nice idea - but pink? REALLY? I'm pretty certain that elicits more than a few pained sighs from Mary...

  • meow13
    meow13 Member Posts: 1,363
    edited February 2015
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    Pink crucifix with a big pink ribbon. I haven't seen the rosary beads you mention. I think I would try even hypnosis if it might work to get rid of cancer.

    This thread has been funny I think we could all use a good laugh.

  • MsPharoah
    MsPharoah Member Posts: 224
    edited February 2015
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    My daughter in law's mother gave me a pink corded bracelet that said "cancer is tough, but I am tougher" she really is a dear person and I didn't take any offense.....but I haven't told anyone til now that I used that bracelet like a rubber band to fasten my jeans when I was chemo-bloated. I wonder how many other pink things could be "mcgyvered" into more useful items.

    MsP

  • bobogirl
    bobogirl Member Posts: 2,083
    edited February 2015
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    MsP, you are making me pee with laughter!

    I am going to need a pink crucifix. I forgot to exorcise myself! So that was the problem! **smacks forehead**

  • MsPharoah
    MsPharoah Member Posts: 224
    edited February 2015
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    Bobogirl, nope, you are the entertaining one! I read you on "Rockin' Flatness Like a BadA$$" I just love, love, love that thread. I admire those who carry themselves with distinction. Confidence is sometimes the only makeup we have. Not sure what generation you are, but I'm sure like me, you refuse to be the note-taker at business meetings.

    MsP


  • bobogirl
    bobogirl Member Posts: 2,083
    edited February 2015
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    I call it 'sharpening pencils.' I refuse to sharpen a man's pencil!

    :)

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited February 2015
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    Bobo - had totally forgotten that phrase! It's a really good thing I had swapped my tea before reading your comment.