Mammos for ILC

Maire67
Maire67 Member Posts: 768
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Mammos for ILC
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  • Maire67
    Maire67 Member Posts: 768
    edited July 2010

    Yesterday I had a mammo on the remaining breast. I chose no reconstsruction because of immune problems. 

    At the center I was given a blue hospital gown,  I noticed that all the slim rich looking ladies were given a nice pink robe.  I was in jeans.  I looked around and there were four other women who didn't have their sunday best on ...they also got blue shlumpy gowns.

    That said...I had the mammo and had to sit in the hall while the doctor "read" it .  The tech came back and said we need to do it over and we did.  10 minutes later I was sent home.  It was Friday morning.  Don't expect results until sometime next week.

    My observation is that this is supposed to be a women's breast health center.  I sat in a hallway but at least I had a locker for my clothes.  One poor young woman who was waiting for a biopsy was carrying her clothes in her coat.  I felt like a 'thing' rather than a paying patient.

    Also ...why are they giving me a mammo?  I had ILC and it wasnt' detected through mammo 10 months  prior to diagnosis.  It was positively diagnosed until biospy after ultrasound and MRI.

    I haven't had an ultrasound or MRI since diagnosis 2005.

    Is this an 'attempt" to make me feel they are looking for "it"?

    I just read my last two mammo's and I have calcifications and suspicious spot ....my onc never even told me this.   I thought she was telling me everything?

    Anyone else have these thoughts about mammo for ILC. ???

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2008

    What a horrible experience.   Not all places are like the one you described.

    As for why they are doing mammos...this is standard of care.

    Mammo unless something is spotted...then ultrasound...biopsy if needed or MRI if undetermined.  HAving said that, your doctor should alert and request (IMHO) more than mammo if your initial dx was found via another technology.

    Also, because you had one Dx of ILC, it doesn't mean that we are precluded from a second primary, which could be a different dx and able to be detected via Mammo....

    If I were you, I would write a letter to the director of that center and let them know how you were treated.  I would also call your doctor and inquire why more than mammo is not done.

    Best to you.

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  • nash
    nash Member Posts: 2,600
    edited March 2008

    Ugh, the mammo place sounds awful.

    Wallycat is right, though, you can end up with IDC, hence the mammos. But I'm surprised you're not getting MRI's, though. I just finished up chemo and rads, and my breast imaging followup with be an annual MRI and annual mammo, but each spaced six months apart so I'm getting some sort of imaging twice a year.

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited March 2008

    My follow up for the remaining breast is MRI every six months. I have my tx at Dana Farber in Boston. Sorry for the horrible experience- there are too many places like that IMO- awful when one ends up at one of them.

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  • Maire67
    Maire67 Member Posts: 768
    edited July 2010

    thanks for your responses.  I will discuss this with the onc and definitely write that letter.  I can't do MRI anymore because of allergic reaction.  I'm just "different" even with my her+.   I couldn't say all that to anyone I know ...they'd think I was batty:-)

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  • 4bethann
    4bethann Member Posts: 34
    edited August 2008

    What a wretched experience, I am so sorry for you. I hope you can get a second opinion on your care. I found this article online and it may be worth reading from Treatment Trends in Early-Stage Invasive Lobular Carcinoma
    A Report From the National Cancer Data Base, 2005

    Clinically, ILC may be apparent only as a poorly defined thickening of the breast, rather than presenting as a dominant mass. This makes the extent of the disease difficult to estimate on clinical examination, and the unusual growth pattern can also make ILC hard to visualize by mammography. Although ultrasonography (US) has been shown to be more sensitive than mammography in detecting ILC,6 it may also significantly underestimate the size of ILC lesions. Magnetic resonance imaging (MRI) is more accurate than either mammography or US in defining the extent of the disease but is less widely available.

    Link below:

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1357735 

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