For Those with Dense Breast Tissue

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  • bdavis
    bdavis Member Posts: 6,201
    edited June 2011

    I just bought that book at my friend's urging... I look forward to finding the time to read it... I guess post-surgery I will have LOTS of time.

    I say now, as I wish I had said during years of mammograms, get an MRI if you can... no use in worrying about the cancerous snowman in the snowstorm, aka tumor in dense breasts on a useless mammogram. Who wants to march on DC?? Get some medical reform going...

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  • Gracieface
    Gracieface Member Posts: 14
    edited June 2011

    Luan:

    No I didn't have the BSGI, you need referral from BS.  I had my appt Tues and she wants me to wait for the tomosynthis imaging that their institution will be starting shortly.  It's a 3D picture and slices the tissue, suppose to cut way down on false positives and have increase specificity and sensitivity.  I asked about MRI's and got the story that many have gotten here: insurance coverage, every MRI done on dense breasts results in an additional 1-3 unnescessary biopsies, etc.  Your damned if you do and damned if you don't.  Have 2nd time excisional bx scheduled for end of June for ADH, she did disucss DCIS as possible outcome this time.  Thanks for asking.           

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2011

    Thanks Springtime, will get the book, have heard it mentioned on other threads.

    Gracieface, I know it's a real tough battle to get tested, the system here stinks too.  One would hope that the system not consider BC a benign fact of life.  It's a killer !  I've oftentimes had the "Oh, it's only breast cancer, there is far more worse...." attitude from medical personnel.

    Will have to enquire about the T.I., anything, anything but a mammogram, would rather drown than have my next one.  Am scheduled for an MRI in August.  I INSISTED on mammo and MRI at six months intervals.  Have not enquired about the BSGI yet, don't know if it's available in our neck of the woods.

    Sorry about the bx, those hurt so damn much Cry

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  • Towny
    Towny Member Posts: 111
    edited June 2011

    THERE ARE LAWS IN SOME STATES!! CHECK OUT AREYOURDENSE.ORG

    ARE YOU DENSE ADVOCACY!! LAWS ARE BEING MADE IN NY, TEXAS, CA, FL ETC!!

    WRITE YOUR CONGRESSMEN, ASSEMBLY PEOPLE!!! EVERYONE. THEY RESPONDED TO MY LETTERS AND I AM HELPING JOANN PUSHKIN IN NEW YORK... PLEASE YOU CAN DO IT. THEY ALL HAVE E MAILS TELL THEM YOUR STORY NOW TODAY!!! DO NOT WAIT

    WE ALL DESERVE TO KNOW WHAT WE HAVE IN OUR BODIES. THE DOCS KNOW AND THEY DO NOT TELL US!

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  • Springtime
    Springtime Member Posts: 5,355
    edited June 2011

    I am not an activist type, nor a conspiracy theorist, but I tell you, if a bunch of dense breasted women marched on DC for medical reform in this area, I would seriously consider joining!! This issue makes nutz.

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited June 2011

    There are no laws that can make us get MRI's.   The new legislation (in some states) makes it mandatory for us to be told we have dense breasts, but does not make it mandatory for insurance to cover it.   Sadly, ultimately, it is up to the insurance companies, as most women would be unable to afford them on a regular basis out-of-pocket (they are around 7K in most major cities).    But this is a good start....baby steps, I guess.....

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  • Towny
    Towny Member Posts: 111
    edited June 2011

    No matter the cost we need to do more screening and more self exams. we need to get the word out to women that you are never too young.. that screenings are not 100%!!! you must know your body better... 

    if the doc does not listen find a doc who will!!!

    We are our own advocates and NO one else will be!!! And and the other one.. it cannot happen to me because there is no history!!!

    These are things we need to get through women's  heads before they get the beast!!

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  • Springtime
    Springtime Member Posts: 5,355
    edited June 2011

    I agree with you Towny!!!!

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited June 2011

    I agree with Towny, too.   I just wish MRI's were part of routine screenings for us and not diagnostic.   Most women won't be able to afford them regularly  if insurance doesn't pay.

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  • Sherryc
    Sherryc Member Posts: 5,938
    edited June 2011

    Well I just learned today that last night Texas Govenor Rick Perry just signed the bill that all women have to be told how dense their breast are.  Now they are working on legislation that Doctors have to inform us of all of our treatment options.  I so hope that passes because I was one that was not informed.

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  • Towny
    Towny Member Posts: 111
    edited June 2011

    The bill is on the senate floor in NY!!! So keep praying... check out DENSE NY on facebook

    areyoudense.org ... both on facebook

    We have get the word out.. This will save lives!!!!

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  • Towny
    Towny Member Posts: 111
    edited June 2011

    I just found out that the bill got stuck in the insurance committee!!!

    Women please write your assemblymen and get these bills passed... We need you...

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  • Springtime
    Springtime Member Posts: 5,355
    edited June 2011

    Thank you Towny!!! THe FB group and the Website are GREAT resources. It really may be that this is the start of the wave to get more traction on this issue. 

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  • Towny
    Towny Member Posts: 111
    edited June 2011

    ALL NEW YORK WOMEN JOIN FORCES AND WRITE YOUR SENATOR.. ASSEMBLY PERSON NOW.. ABOUT THE DENSE BREAST BILL THAT DID NOT PASS THIS YEAR!! IT MUST PASS IN 2012!!

    IT IS ABOUT GETTING INFO TO THE WOMEN SO THEY CAN MAKE AN INFORMED DECISION.. NOT WHETHER ONE SCREENING IS BETTER THAN ANOTHER!! IT IS ABOUT KNOWING IF YOU HAVE DENSE BREASTS AND WHAT THAT MEANS!! DENSE BREAST TISSUE MEANS YOU ARE 6X MORE LIKELY TO GET BREAST CANCER AND THE MAMMOGRAM CANNOT DETECT IT!!!!  PLEASE NEW YORKERS GET YOUR PENS OUT.. SEND E MAILS  DO SOMETHING NOW!!!!

    AREYOUDENSE.ORG ADVOCACY!! FACEBOOK!! CHECK IT OUT

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  • Springtime
    Springtime Member Posts: 5,355
    edited June 2011

    Go Towny!!  Why did the bill not pass in 2011, do you know what the issue was specifically ?

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  • Towny
    Towny Member Posts: 111
    edited June 2011

    No not sure what the issues were.. it got stuck in the insurance committee.. We were mislead and thought it was a slam dunk!! We should of made phone calls a month ago to ins committee people .. and it may of gotten through.

    One thing for sure.. the sweaky wheel does get the job done.. There will be more calls more letters and more emails this go around.

    The senate passed it unamiously... so I am hoping 2012 will not be so hard.. but we will not sit on our laurels this time.

    PLEASE ALL NEW YORK WOMEN WRITE, E MAIL CALL !!!

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  • Towny
    Towny Member Posts: 111
    edited July 2011

    House of Representatives

    https://writerep.house.gov/writerep/welcome.shtml

    United States Sentate 

    http://www.senate.gov/general/contact_information/senators_cfm.cfm?State=NY

    Ladies write your representives... contact areyoudense.org.. they have all the infor .. they can e mail it to you and you can send it on!!! Please do something!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Towny,  Thanks for the info.  From someone who had a "near miss" because of dense tissues (I'm not even sure I knew what my first BS meant when he kept saying it-and I'm a nurse!), I will do whatever I can to get this kind of legislation passed....Pat

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  • JenAnn
    JenAnn Member Posts: 19
    edited July 2011

    So glad I found this thread..I was wondering if it was unreasonable to ask for a MRI before my BS does any cutting. My mammogram states that both breasts are so dense that they are difficult to read. I once had an U/S for a complex cyst and the tech said I don't even want to move the transducer an inch you are so filled with cysts. They have only looked at areas of concern that showed on mamo. This latest area was twice as big on U/S than it appeared on mamo. I have been a member of the 6 month club many times. Have had 2 core needle biopsies, two aspiration biopsies and this will be the second time being sent to BS. I think it is time for an MRI...I want the total picture ! What do you guys think?

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  • bdavis
    bdavis Member Posts: 6,201
    edited July 2011

    ABSOLUTELY... I had an MRI before my surgery and can't imagine not having it... If they find something else, it changes your surgery options...

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  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    JenAnn, YES insist on the MRI at this point. I was so dense that ultrasound saw nearly nothing. BUT, the MRI lit everything up like a light bulb! Density doesn't matter at all for MRI. 

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  • JenAnn
    JenAnn Member Posts: 19
    edited July 2011

    Thanks Betsy and Springtime...I am going to ask when the nurse calls for my hx this week and if that is refused I will try for a bilat breast US. Thanks for replying :)

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  • bdavis
    bdavis Member Posts: 6,201
    edited July 2011

    JenAnn... US is never used to go looking for stuff... it is not a diagnostic tool... If they refused, I would ask a second doctor... There is a woman on here Crystal who's first doctor refused and she went to another doctor...

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  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    I also would go to another doctor if this one won't work with you and fight for you to get an MRI. At this point you NEED the MRI. They may say your isnurance won't pay, yadda yadda, they said this to my sister in law, and hers paid. You have to push. You have to advocate for yourself. If you have dense breasts, you really need the MRI.

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  • JenAnn
    JenAnn Member Posts: 19
    edited July 2011

    Good to know...I hope I will not have a problem. I just looked up this BS and he actually published an article about the use of MRI in diagnosing breast diseases. I really never would of thought of it if it wasn't for this website. Thank you all !!!

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  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    JenAnn, let us know what happens!!! Good thoughts your way....

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  • momof2greatkids
    momof2greatkids Member Posts: 56
    edited July 2011

    reality check - when america's new healthcare plan goes into effect, it will override any bill you are trying to pass now. I agree w/ above, fight with ins co to get it covered, and they might, but when the day is here when we have to fight w the government to get a procedure, better plan on taking a few weeks vacation to try get it done. (and the chances of success are pretty slim- there are hard and fast guidelines that cannot be deviated from - by statute.)

    so fight now w ins co and try ot get the MRI.  I had one--without any fight.  One breast ok, but given what I have been told by people that work in the area of healthcare policy and in the healthcare field, when they told me that it is highly unlikely i would even get an ultrasound under  our impending new government insurance, i opted to have a bmx, given that my breasts were very dense.Not trying to be a downer, or to denounce the dramtatic change we are about to see in this country, just trying to be real so you can get done what you can now. (and just take a look at some stories in other countries on the mom's of small children that have died that were under similar government 'insurance' plans. Dead, and had husband's that valiantly tried to get their government to give certain treatments - no go.)

     I am just really sad that women are the ones that will lose the most under this new plan. Really, really sad. 

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  • Towny
    Towny Member Posts: 111
    edited July 2011

    AS FAR AS I AM CONCERNED ... THIS IS A CIVIL RIGHTS ISSUE!!! WHY DO WOMEN ALWAYS GET THE SHORT END OF THE STICK!!!!

    WE ARE BLAMED FOR OUR BC BECAUSE OF WHAT WE EAT OR HOW MUCH WE WEIGH.. DO MEN GET BLAMED FOR PROSTATE CANCER... THEY HAVE A BLOOD TEST. WHY CAN'T WE GET ONE!!! I KNOW THERE ARE MILLION KINDS OF BC OUT THERE.. I AM SURE THERE IS MORE THAN ONE KIND OF PROSTATE CANCER AS WELL...

    I AM SICK TO DEATH OF FIGHTING FOR EVERYTHING WITH THIS BC!!!! DENSE BREASTS IS A REALITY AND THE INS AND DOCS NEED TO DEAL WITH IT... ACCEPT THE FACT THAT MAMMOS ARE NOT THE END ALL!!!! TELL THE WOMEN ABOUT THEIR BODIES!!!! IT MAKES ME SICK!!!!

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  • mammalou
    mammalou Member Posts: 823
    edited July 2011

    I agree!

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  • Springtime
    Springtime Member Posts: 5,355
    edited July 2011

    WHAT TOWNY SAID!!! That was great!!! Hoo-rah!

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