ILC/mammogram/MRI

mymountain
mymountain Member Posts: 184
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I came across this article about ILC and imaging.  I hope you are able to view it.  I couldn't copy the whole body so you will have to cut(or copy?) and paste it into the address. The opening statement as well as the text following the images is interesting, and in part reports mammographic sensitivity of ILC to be from 57% - 81%, with higher false negative rates than other cancers due to the difficulty of it's mammographic detection.

MM

http://www.wcclinical.com/stuff/contentmgr/files/abc958a89a025b8259db167fb00c6a8d/pdf/wcc_note_vol4_3.pdf

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2010

    Very interesting!  Thanks for sharing.  I think it just goes to show how important it is to have a really good and experienced radiologist reading our films, because on first-glance, those initial views are pretty benign looking.  I wonder how many times these subtle clues are simply missed?

    And BTW, when you post a link, if you hit the space bar after you paste, it should turn it into a clickable link.     Deanna

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2010

    oops! posted twice...

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  • mymountain
    mymountain Member Posts: 184
    edited August 2010

    http://www.wcclinical.com/stuff/contentmgr/files/abc958a89a025b8259db167fb00c6a8d/pdf/wcc_note_vol4_3.pdf

    Deanna, you are so smart!  Someday I'll get this computer thing down

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    I'm looking for anyone who has had a negative MRI with ILC or LCIS.  I have a lump that everyone can feel (3mm on the ultrasound) that does not show up on an MRI.  It's in the exact same spot as the original cancer, right under the skin.  I've had a BMX with reconstruction, so a biopsy would mean risking the implant.  Too small for a needle biopsy....says the surgeon.  She (surgeon) wants to wait another 3 months and then look at the ultrasound again.  I won't sleep until I know what this lump is.

    Anyone???? I need some backup!!!  Did this happen to you or anyone you know?

    Many thanks..I'm going nuts.....and looking for another surgeon! 

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    SherriG,

    Thanks for the post.  Yes, I did have an ultrasound, done twice by the surgeon.  Her findings were that it was "indeterminate."  My original BC did not show up on mammo or ultrasound either, again it was just a lump that we all felt.  That's the reason I'm so freaked.  How in the world can a breast surgeon tell me that "there's nothing there?!"  I really dread going to another sugeon and repeating the whole story one more time and risking that they will thing I'm over reacting, too. 

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited September 2010

    Hi,

    My 1 cm ILC showed up on the mammo, the ultra sound and the MRI.  The only way it wasn't detected was by feeling a lump because you never could.  I think the MRI is the most reliable method for finding ILC.  Good luck!

    Nancy

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited September 2010

    Hi, I had 10 years of mammograms and was always cleared.  No worries. I move to Tokyo and at my 1st appointment, the doctor, using ultrasound now,  finds a 2 cm tumour.  How long had this been growing in me ?

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    TokyoSing,

    I often wonder the same thing...how long did my ILC take to get to the point where I could feel it.

    Is ultrasound a standard screening in Japan or did you feel something and get it checked?  Aren't you lucky that you found it!  Many ILC's aren't discovered until they're bigger than 2 cm.

    SherriG, my onc. has suggested a new ultrasound, read by a radiologist.  The previous US, done by the surgeon doesn't have as good a resolution as a radiologist and he said sometimes insurance won't cover a biopsy unless recommended by a radiologist.  Interesting.  I just keep on learning.  

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited September 2010

    Beckward, I just showed up for my yearly check. Lo and behold.... I learned that in Japan, Hong Kong and Singapore,  doctors use both mammograms and ultrasound routinely.  Ultrasound is totally painless, even I could see the tumor when it was pointed out to me.

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  • amlg1
    amlg1 Member Posts: 596
    edited September 2010

    Same as Sherri,only MRI could find my ILC.Mamo did show enlarged nodes.

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    Got a call from my OB yesterday.  She saw the negative MRI and wanted to know what was going on.  Couldn't believe I hadn't had a biopsy!  Here I am at 5 am, writing this because I can't sleep.

    Yes, I will find some resolution...and will let you all know whatthis lump is.  Hoping it's a cyst. If it is a recurrence, I welcome your ideas on how to tell the BS!!!!

    Oh, you'll love the BS favorite word...nodularity!!!!   Not a word you use with a BC survivor.  

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  • Houndmommy
    Houndmommy Member Posts: 377
    edited September 2010

    I spoke with my breast care nurse recently (I am considering a prophylatic mx on noncancer side) to discusss ILC and how to detect it.  I was under the impression that it could always be seen on an MRI but she said that is NOT the case, thatr sometimes MRI's don't detect them (ILC).  Hopefully your lump is just a cyst but I think you are doing the right thing by trying to find away to get it biopsied.  Then you will have peace of mind.  Good luck!

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  • kar123
    kar123 Member Posts: 273
    edited September 2010

    Hello, 

    My ILC did not show up on Mammo, Ultrasound or MRI.  I felt and saw a change in my breast, had all the scans that showed nothing but normal breast tissue and was told to relax by every radiologist.  It was only because my tenancity and paranoia that the breast specialist had me come back for a follow up in two months instead of 6 months later.  A biopsy finally gave me a diagnosis. I have my last chemo treatment on Oct.11th and then a double mastectomy (A PET Scan finally showed that it was in my left breast and one node for sure. I am choosing to have the right removed also since this cancer is so hard to detect) followed by radiation.  The whole thing is still surreal to me, but I'm getting through.  Good luck to you and follow your gut. 

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  • beckward
    beckward Member Posts: 59
    edited September 2010

    Dear ILC friends,

    Kar123,  I think your decision to do both is the right one.  I saw a BC bumper sticker a while ago that read, "make mine a double!"  I hope that makes you smile!  Yes, surreal is a good word for this.  

    Thank you guys so much for the support.  I feel that I should be yelling this from my roof-top.  

    I had a diagnostic US today, ordered by the onc.  The radiologist says that my lump is NOT a cyst, but looks like a suspicious lymph node that should be biopsied.  Furthermore, he looked at the actual DVD of my MRI and it is NOT clear.  There is an area of enhancement at exactly the spot of the lump!  I had the MRI done at a private imaging center....is that radiologiest not at all responsible for the info. that they give?  If this turns out to be a recurrence, I am NOT paying their bill. 

     I've found a new BS...she works with my PS a lot and her nurse said she wouldn't hesitate to biopsy with an implant in the office, especially since the PS will be next door!

    HUGE lesson for ILC....that we are all so LUCKY to have found ours.  Think of how many women are walking around and don't know...or worse yet....think that their mammo. US or MRI is fail safe.

    New BS appt. on the 11th, same day as your last chemo, Kar123.  So now I wait some more...and hope it's a lymph node. 

    Beth 

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  • beckward
    beckward Member Posts: 59
    edited October 2010

    Needle biopsy yesterday, so now I wait.  The procedure was really tricky, since lump was up against the implant, but it was done by a radiologist who was fabulous.  But at least I'll know.

    Beth 

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  • Gitane
    Gitane Member Posts: 1,885
    edited October 2010

    Hi Beth,  Just wanted to offer some hugs as I know how stressful it is to wait.  If it helps, I had a place light up on the MRI that was biopsied and found to be benign.  Not all proliferative spots are cancerous.  Thank goodness for those fabulous radiologists.  

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  • busymom7
    busymom7 Member Posts: 3
    edited November 2010

    Hi - I noticed a dimple on my left breast and pointed it out to my gyno who immediately ordered a mammo and ultrasound.  Nothing showed up on the mammo and the ultrasound showed an unusual area but no one could feel anything.  The radilogoist said we could just watch it or have it biopsied,  No way was I going to wait. I am 49 and my mother died of BC at 46 and her sister was diagnosed at 43.  The biospy indicated that it is ILC about 1cm, so I am also going to have chemo since I am pre-menopausal. BRCA was negative.  I am having a double mastectomy on Friday with reconstruction plans in the future.  MedOnc suggested I do not start any reconstruction since complications from that could delay chemo.

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  • mymountain
    mymountain Member Posts: 184
    edited November 2010

    busymom,

    will you be having the oncotype dx test on the tumor tissue to determine chemo response? 

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  • Gitane
    Gitane Member Posts: 1,885
    edited November 2010

    busymom7,  How wise you were to get that biopsy.  As much as we hate to get this diagnosis, catching it early is so important. Some women are now getting Zometa with the chemo and after.  Something to ask about anyway.  Let us know how you are doing.  

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited November 2010

    Hi Beckward,

    I was just diagnosed with a recurence of ILC. The Mammogram, MRI and PET scan all missed 4 of the 6 tumors because they were on the surface and very small. Only the biopsy identified them as ILC.  Please push to have them biopsied for peace of mind. They were just tiny little pink bumps under the skin. 

    Take care,

    Nancy

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  • hihopes
    hihopes Member Posts: 69
    edited November 2010

    Hello ILC ladies:

    This is one sneaky disease!!  I have had annual mammos and U/S since turning 40 - am now 60.  Have dense breast tissue and felt I was doing all I could to stay healthy.  8 Months after my last negative tests, a  dimpled lump appeared.  My PCP made an appt. with a BS immediately.  Within a week I was DX with stage IV.  Biopsy is the only way to be sure.

    Busymom:  I am thinking of you to-day and hoping your surgery went well.

    Regards

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