ILC, Dense Breast Tissue & Mammograms

foobs
foobs Member Posts: 110
edited June 2014 in ILC (Invasive Lobular Carcinoma)

 There is a shocking lack of awareness of  ILC, the hard to detect cancer, and the failure of mammograms to detect this cancer in women with dense breast tissue!  In these discussion boards of ILC, so many women are stage III and their ILC went undetected for years, despite annual mammograms, as was my case.  Our gynecologists are pushing HRT and don't seem to understand that they're not being vigilant enough in women who also have dense breast tissue.  I think this is appalling and you should too!  I would have gladly paid for my own ultrasound, if it had been even suggested by the nurse practitioner (I never got to see the actual Dr).

What can I do to raise awareness of this issue?  What is BreastCancer.org able to do to that end?   

  

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  • geocachelinda
    geocachelinda Member Posts: 223
    edited February 2011

    I agree my mammos and even ultrasound failed to detect my cancer even though I had a tumor that measured nearly 7cm!  I was finally diagnosed by MRI and biopsy.

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited February 2011

    I had 10 years of digital, diagnostic mammograms, and every year they tell me, "all clear, see you next year." I move to Japan and they do mammos and ultrasounds on everybody.  Lo and behold, they find a 2.2 cm tumour.  ILC is really sneaky.  If like me, you have lumpy, dense breast, pay for your own ultrasound.

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  • ajerniaL
    ajerniaL Member Posts: 5
    edited February 2011
    I have a friend who was diagnosed lately with breast cancer and it was really hard for her to be strong in her situation. Her doctor told her about stopping the spread of cancer of the breast may mean obstructing the LOXL2 enzyme. LOXL2, is an amino acid creation enzyme in the body that helps create collagen and elastin. I don't understand it well but I hope it would help her.
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  • BrendaAreYouA4
    BrendaAreYouA4 Member Posts: 92
    edited February 2011

    I had the same thing happen.  I am now working with my legislatures to get a law passed that will require that everywoman who has a mammogram will be informed of the following

    1 -  their breast density (which is information the radiologist records in every mammogram and which is given to the ordering Dr. but not the patient)

    2. Women with dense breast tissue (groups 3 and 4) are 4 to 6 times more likely to develop breast cancer -- This is a risk factor greater than having a mother or sister with BC.

    3. As breast density increases mammogram reliability decreases.  In women with 'extremely dense' (group 4) breasts mammograms miss cancers up to 70% of the time.  Alteranate methods of screening (MRI, Ultrasound, MBI, etc.) should be considered for women with dense breasts.

    I live in NH and next year at this time my hope is that this will be law.  I have had overwhelming support for this bill and can hardly wait to see it become a reality.  I know it will save lives.

    Contact your legislatures and google Deborah Rhodes and watch her speech on breast density.  She's my new hero.  I want her to come to NH and testify in support of this legislation.

    Good luck on your endeavors...You can be the difference!!! 

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  • tabby
    tabby Member Posts: 135
    edited February 2011

    Brenda:  Thank you for all your hard work!  Is this legislation just for your state or is it something national?  (Sorry, not a political person)  My ILC also was not found via mammogram, although calcifications were.  I also had fibroadnomas (which are harmless) but only showed up on ultrasound (had that happen twice).  I asked why I could not have both but they wouldn't do it.  Had MRI but the ILC did not show up there either as it was so small.  It was really a miracle to be found within tissue from a removed fibroadnoma (had already been diagnosed with LCIS).  I am amazed that women dealing with breast cancer can take on legislation as well as dealing with this disease--my hat is off to you!!

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  • NotMyTime2Go
    NotMyTime2Go Member Posts: 34
    edited March 2011

    Thank you so much for this information. I just watched the video of Deborah Rhodes and am still wiping away the tears. I had a "normal" mammogram in October of '09, and two months later noticed changes in my breast. I put off having it checked for a couple weeks (though I doubt that made much difference) because of my normal mammogram. It turns out it was almost 7 centimeters and in 12 lymph nodes, making it stage III ILC. I inaccurately believed myself to be in a low-risk group for breast cancer, as I had no relatives with a history, was healthy, and had spent five years of my life breast feeding. I am so grateful this information is coming out. If I had just had someone explain dense breast tissue and the need for diligence, perhaps I could have found it sooner and not be living with the fear of recurrence as I do now. I will have to do more research to see what I can do in my state to make progress with this issue! 

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  • Towny
    Towny Member Posts: 111
    edited March 2011

    Dear Everyone!! It is not the cancer that makes the difference it is our dense breast tissue. I thought it was my triple neg 8cm tumor that the mammogram could not see after having a clear mammo 4 months before. It was the breast tissue that the mammo was never going to see through!! i asked the same question on the High risk discussion board. Go there and you will see some discussions about areyoudense.org. Women who are working to change laws so we know that we have dense breasts and mammograms do not work for us. There needs to be other screening and more info. We should not have info about our own bodies witheld.  Breast cancer.org needs to talk about it more. This is a big deal. The amercian cancer society will not recognize the dense breast issue but Susan G Komen does!! It is a political fight.. but the people who will loose are the women who do not have the info to make a proper decision. Please check out DENSE NY or Im dense are you or are youdense all on face book. We all need to wright the politicians and ask questions and get the docs to talk about this...

    Dense breasts are dangerous and we need to know if we have this health risk so we can get bette screening.  We all need to know mammograms miss things.  That is not to say we do not need mammograms we need a combination of screenings.  WE ALL NEED TO KNOW THAT SELF EXAMINATION IS THE BEST WAY TO FIND CANCER AND STOP RELYING ON OUR DOCS AND THE MAMMOS. SAD BUT TRUE!!!

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  • IwillBhealed
    IwillBhealed Member Posts: 160
    edited May 2011

    I have dense small breast and  2 biopsy done 1 in 7/06 and 1 in 4/08. well lo and behold  In  dec of 09  nipple went in and in 1/10 bingo BC and stage 4 to boot right out of the get.  WTF??So who screwed up??? I wonder do i ahve a case???. Oh yes... and i started getting my annual mamo's when i turned 40 too..

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  • Hipline
    Hipline Member Posts: 195
    edited June 2011

    I have no history of BC in my family and was very healthy and never thought much about it.  But I did get annual mammograms starting at 40 and my Dr told me I had dense breasts but not to worry as the mammo's I was getting were digital and would detect cancer.  Not so.  I found it myself after getting an ultrasound to look at a bruise from a fall!  Thanks for your work Brenda, I will support you!

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  • orlandpark65
    orlandpark65 Member Posts: 106
    edited July 2011

    Me too.  Stage III. Dense breast.  My sister n law has dense breast, I'm all over that.  Mamo's obviously didn't catch mine until it was advanced.   I feel like Im on my soap box.   

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