6 X More Likely to Get BC - Call for Action

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  • weety
    weety Member Posts: 1,163
    edited June 2010

    okay, this may be a dumb question, but since I am (was??) a young, premenopausal women with small, dense breasts and breast cancer, does density have anything to do with either the size of breasts or the amount of fat overall on a person?????? 

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited June 2010

    Weety,

    I had big breasts and when the tech said "Wow, you have dense breasts."  I asked her, "Do you mean they're big?"  She explained that breast density was related to the amount of connective  (stroma) and epithelial tissue which shows up as white on mammograms versus fat which is clear on a mammogram.  The more fat in the breast the clearer the image.  On a mammogram cancer shows up as white and can therefore be hidden by the connective and epithelial tissue.  Women with small breasts can have dense breasts.  I don't know if there is a relationship between breast density and amount of body fat.  I'm thin, (my BMI is 20) and my breasts had almost no fat (and were therefore 'extremely dense'').  Breast density is related to age.  The younger you are the higher your density.  As age increases density decreases this is why mammograms are more reliable for women 50 years and older -- they have more adipose and less connective and epithelial tissue which then increases the mammogram readability. 

  • rumoret
    rumoret Member Posts: 685
    edited June 2010

    After getting breast cancer I always ask the technician if I can look at my digital mamo to see how WHITE they still are...I also ask for a copy of the report they send to my doctors (the nice little letter they send to my home tells me JACK SHIT!)

    My mother was dx with breast cancer at age 69 and has dense breasts...her mamo did not find her lump.

    My breast were also dense and the radiologist told me not to feel bad about missing my last three mamos because my breasts were so WHITE that a radiologist would have never seen the lump at a smaller size (then he showed me my cancer in this sea of WHITE.....there is no way a small speck would have been seen!)

    So today my decision is to remove my other breast (I have wanted this ever since going through chemo) and knowing that I have a dense breast remaining.... only confirms my decision.

    Love to all of my sisters,

    Terry

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited July 2010

    Rumoret,

    I am so sorry to hear what you have had to go through.  I hope your Mx goes perfectly and that your recovery is as painless as possible.  You'll be in my prayers. 

  • gwerfil
    gwerfil Member Posts: 39
    edited July 2010

    I was told I had dense breasts a few years ago--after menopause. Lke a dope, I thought it was a good thing that they were still "firm." No doctor or technician ever told me about breast density obscuring detection on a mammogram. Are we expected to just know these things? Of course, it makes perfect sense now. I want to look at my digital mammograms. I just had my one year post lumpectomy mammo done in May and it was clear. But was it? Now I'm concerned. I've been taking Arimidex for a year and my breasts still feel dense. I don't even eat yams, or soy, or take black kohosh, or any plant estrogens and I only eat organic, hormone-free chicken and I've given up dairy. I take 5,000 units of D3 a day because mine was pitifully low at diagnosis. I am a little below average in weight for my age. If I am without estrogen, shouldn't my breasts be less dense now?

  • gwerfil
    gwerfil Member Posts: 39
    edited July 2010

    rumoret, or Terry, please forgive me for not addressing your post. I wish you a smooth recovery and I can certainly understand your decision. This dense breast thing has been worrying me for a while. My oncologist told me that they had to look really, really hard at Mayo to find my tumor and that it could easily have been overlooked in my small-town mammography center where I had previously been going.

    We don't need time bombs.

    How is your mom?

    Hugs,

    Penny

  • Fergy
    Fergy Member Posts: 114
    edited July 2010

    I am so happy that I came upon this board!  I had a biopsy done March 2009 due to a BIRADS 4C mammogram for calcifications.  I have kept all of my reports and just went back through them.  The Radiology report from March 2009 states "Adenosis and dense breasts may obscure any underlying lesion creating a false negative report".  It also says "The breast parenchyma continues to be dense and somewhat asymmetric".  My biopsy results were "Sclerosing Adenosis, apocrine metaplasis, columnar cell alterations, no atypia seen.  I was referred to have a follow up MAMMOGRAM in 6 months.  The results of that mammogram in Sept 2009 states "Otherwise, the parenchyma continues to be moderately dense".

    I have been to my GP and two BS and no one has recommended any additional testing other than mammogram.  The first breast surgeon mentioned an excisional biopsy in passing but did not seem sincere about the real need for it.  I cannot believe SOMEONE hasn't suggested an ultrasound and MRI.  In September the BS told me to go back on my annual follow up mammograms in March because "Everything is now stable".  I put it off until the summer so I could get on a summertime annual routine.  I am going to go next week to the doctor to have my breast exam and annual mammogram ordered so now I am armed with a lot more knowledge.  I am going to first call my insurance company and find out what their position is on MRI and ultrasound in my situation.  What is wrong with our medical community?

    I also came across a clinical trial being conducted by the Mayo Clinic regarding Molecular Breast Imaging as a screening tool for women with dense breasts at http://ClinicalTrials.gov identifier NCT00620373.  There is also a new 3D Mammogram machine in clinical trials awaiting FDA approval that found a woman in Houston Texas cancer that traditional mammogram missed.  

    I am 53 years old and post menapausal.  I was told that sclerosing adenosis is normally found in younger women but was never given an explanation of why I would have it.  I have very lumpy, ropey breast, always have and most doctors give up halfway through my breast exam because of it.  I have had a sick feeling that they missed something ever since I got the BIRADS 4C report but thought I was just being paranoid.  Now I am going to be more agressive with my questions at my next appointment.

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited July 2010
    Check out the areyoudense.org site for lots more information.  I went with a girlfriend to see her doc when she was called back for a mammogram in March.  I asked them if she was classified in the very dense category and they said yes.  They acknowledged that the mammogram was incapable of detecting masses in at least 75% of her breast.  They also agreed that her dense breasts made it more predisposed to cancer and more likely for it to go undetected until it was a later stage cancer.  I asked if they would do a MRI and they ordered it and the insurance company approved with no problems.  Good luck -- Be strong and trust your instinct!
  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited July 2010

    BTW my friends MRI was clear.  Now she will have MRIs instead of mammograms.

  • Fergy
    Fergy Member Posts: 114
    edited July 2010

    That is good news about your friend.  By speaking up for her you may have saved her life, you are a good friend!  My density is only moderate not very dense but still a risk I believe, especially combined with my other breast issues.  I am going to definitely ask the radiologist and my doctor about the density issue and see if I should get an MRI too.  Even if I just get one this year I think I would feel better about the diagnosis I received last year with the stereotactic biopsy.  Better safe than sorry!

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited July 2010

    I just got all my radiology reports and going back to 2002 they each stated that I had extremely dense tissue and that lesions could be obscured in much of the breast.  Alternate methods of viewing were suggested.  It stated that a letter was sent to the patient -- that would be me.  The only letter I got was that my Mammogram was normal and to come back in a year!  This is just plain wrong!  Get your radiologist's reports ladies!  I can't stress it enough!

  • every8thwoman
    every8thwoman Member Posts: 147
    edited July 2010

    Hello Everyone,

      As a survivor who's mammogram showed no tumor (when a 1.4cm existed), I'd like to suggest the following: 

    Every mammography clinic in the U.S.  should be required BY LAW to post the following (in large lettering- or even by flashing neon sign) in common waiting room areas:

    1.   Mammography only detects AT MOST 75%-80% of all breast tumors.

    2.  How much more improvement in tumor detection (in percent) adding MRI's to mammography will give a patient .

     

    3.   Information that increased breast density increases risk of undetected breast cancer.

    If women saw this every time they entered the mammography clinic,  I guarantee you there would be an uproar comparable to last years misguided mammography guidelines.  Women should be aware of this every time they get screened.  My cancer was caught as early as it was ONLY because the MRI found my tumor. Mammo alone is a JOKE.

  • Medigal
    Medigal Member Posts: 1,412
    edited July 2010

    Great Post!  Every time I see a woman with great big tits I know it is nothing for any one to envy.  I spent years of my life getting biopsy after biopsy because my doc was so concerned the fibro disease which made me dense could be hiding bc.  It was that year that my mammo came back "negative" that luckily my gyn found the lump.  They always checked me thoroughly and told me to check myself but I never knew what to feel for!  So I went several times a year just to get the docs to check me out.  I NEVER felt if I ever got bc it would be found on a Mammo.  However, after they felt the lump and sent me for an Ultrasound (which now my insurance would pay for since they had cause) it showed the lump clearly! 

    Such is the nature of our medical insurance system.  You want women to march or something against this?  I think we need to march against the unfair insurance system we have in the US!  It should be a necessity for all women with dense or Fibrocystic breasts to be allowed to either have the Ultrasound FIRST or have both of them yearly!  However, I once read that the Ultrasound will not pick up certain lumps which a Mammo can so it really looks like we dense women need both!  Tell me where the "line" forms!

  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2010

    I GUESS WE HAVE TO START A RIOT.HEY IM A TROUBLEMAKER...LETS GO GIRLS..WHERE DO WE START?

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited July 2010

    I would suggest that you all ask for the radiologists report and tell all your friends, neighbors, everyone.  I just got mine and since 2002 my breasts have been extremely dense and the radiologists report said the mammogram was not effective because of this.  Did anyone ever tell me?  No!  The letter I got said everything was fine!  See you next year!  I wonder why insurance companies even pay for this test in women with dense breasts since it is so ineffective?  Why did I spend all those years getting mammograms and why did the insurance company pay for it?  The radiologist who did my last biopsy of the IVC said I had probably had the tumor for a few years!  Good thing I had those mammograms!  

    I am working on getting a law passed in NH similar to the one passed in Connecticut.  I know that others are working on getting laws passed in Texas, California, and Florida.  

    We need to educate women and doctors and we need to change the criteria for selecting screening methods...I think we need Oprah!  

    Nancy from, AreYouDense.org has proved that change is possible! 

  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited February 2011

    Great News!!!  My representatives are sponsoring a bill to inform women, each time they have a mammogram of:

    - their mammographic breast density (scale of 1 to 4)

    - Having dense breasts in and of itself increases a womans chances of developing cancer by 5 - 6 times

    - Mammogram accuracy decreases as breast density increaces so alternate screening methods (i.e. US, MRI, MBI, etc.) should be used.

     Change is possible!!!  

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