lobular bc-mammo or MRI

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erinkoepp
erinkoepp Member Posts: 4
edited June 2014 in Stage III Breast Cancer
lobular bc-mammo or MRI
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  • erinkoepp
    erinkoepp Member Posts: 4
    edited April 2010

    Hi- I'm coming up on almost one year since dx.  It's time for the breast exams again.  Since my lobular bc was not noticed on my mammo, nor did 2docs feel anything on exam, i am quite anxious to have it all done again.  do you just forgo the mammo and go right for the MRI?  The radiologist told me that they most likely would do the mammo- obviously I have no faith in them anymore.  What do they do to look at the mastectomy side?  Any replys would be appreciated.  I'm getting anxious.  also the fact that I will soon be done with Herceptin and only on Arimidex isn't helping any.  Thanks.  Erin  

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  • diana50
    diana50 Member Posts: 2,134
    edited April 2010

    hi erin

    often times...because of insurance...they do the mammo first...then proceed to do the MRI. since you are recently diagnosed and finished treatment....i think a good way to track is with MRI. i have dense breasts...and i get mammo and MRI....the radiologist can refer for a MRI if necessary. i was on a schedule of mammo....then 6 months later...MRI. if they see anything or feel anything ...they refer me immediately for MRI.

    ** diana

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited April 2010

    erin

    Your diagnosis signature shows Lobular Cancer In Situ which, according to everything I've read, is stage 0 and is not treated with chemo.  So I'm assuming you meant ILC (invasive lobular cancer).

    If you look at the ILC forum you'll find this is a real sore point with ILC women.  The vast majority did not have their cancer show up on a mammo.  Only the MRI.  I just completed neoadjuvant chemo and they would do periodic "re-staging" checks.  The first 4 were done using a mammo.  Guess what.  They never saw the tumors.  I kept questioning why they were using the mammo.  They finally switched to US but even then the only thing they saw was the lymph nodes.  Only the MRIs that I had at the beginning, between chemo regimens and at the end would show the tumors. 

    Only about 10% of the BC women have ILC.  So you might be dealing with a radiologist who doesn't have any experience with it.  I think it's very important that you insist on a periodic MRI.  For those women who had lumpectomies they use the same screening processes that Diana mentioned - alternating mammos and MRIs.  It cover all the bases.

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  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2010

    I agree: I had 12 years of "clear" mammos then was diagnosed with Stage 3 ILC. No, I don't trust mammograms. My BS still wants me to have them, even after BMX, because he said they might spot skin mets. But I can't handle that emotionally. If the mammo shows clear, I still wouldn't trust it. So why put myself through it?

    On the flip side, it was a very alert radiologist who finally spotted my ILC on a mammogram. My BS was shocked that the radiologist saw it, because even he couldn't find it when he looked at the films.

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  • erinkoepp
    erinkoepp Member Posts: 4
    edited April 2010

    Hi-thanks for the dx explanation.  I just looked at some of my paper work and it says lobular adenenocarcinoma.  I guess what that means I really don't know.  To be honest I've kind of wanted to hide my head through all of this-I just do what they tell me to. I'm kind of afraid to ask many questions-when you start all this mess at IIIC, well, I'm just afraid.  Erin

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  • Texas357
    Texas357 Member Posts: 1,552
    edited April 2010

    Erin, knowledge really is power. Never be afraid to ask questions or to ask for clarification! Your doctors and nurses should be very experienced at explaining things. My breast surgeon actually made an audio tape of our initial conversation because he realized it was a lot to absorb.

    Write down your questions ahead of time so you dont' forget.

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  • jpsgirl96
    jpsgirl96 Member Posts: 240
    edited April 2010

    Hi Erin, I am four years out from diagnosis by "accident" when after a mammogram found DCIS (with a micro invasion) in my left breast, my breast surgeon sent me for an MRI to make sure there was nothing else going on.  The MRI found the more serious ILC (I had 6/16 positive nodes).  After bilateral lumpectomies, chemo and radiation,she put me on a schedule of two mamograms a year and one MRI.  After four years, she has just put me on an alternating mammogram/MRI schedule, still every six months (so I have MRI in January, mammogram in July).  I'm assuming you were able to keep your breast?  In any case, Lobular can take a long time to show up on mammogram, so it's important to get breast-specific MRI's periodically.  Thinking good thoughts - hope this helps.  Leigh

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  • amlg1
    amlg1 Member Posts: 596
    edited April 2010

    Another one here who had yearly mammos for 22 years,then last year mammo showed nothing in breast,but enlarged nodes.I just had my first mammo(had lumpectomy) and everything was clear,my BS said once a year is fine!!! Oh NO it isn't,I talked to my onco,and told her I was very uncomfortable with that,afterall I went from nothing to stage 3,and even when they saw the nodes still couldn't see anything in my breast,until MRI.So I want mri in between.Best Wishes!

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited April 2010

    Hi, I also had 10 years of clear mammograms. My ob-gyne told me I had lumpy breasts, but no worries!   Last Dec, we moved to Asia.  Apparently, in Japan, HongKong and Singapore, they routinely do mammograms and ultrasound together.  My ultrasound uncovered a 2.2 ILC tumor.  Ultrasounds are painless - why didn't anybody in tell me about them?

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