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Best imaging for screening?

I know MRI is not standard of care (right?), but what do you get for lobular screening? Mammo? Mammo+US? Digital tomosynthesis? MRI?

How frequently?

Love to all in here.


  • moderators
    moderators Posts: 7,894

    @gm6789, welcome to! Until you get responses from other community members, you may find some helpful information about ILC diagnosis, treatments, and more in the following section of our main site: Diagnosis of invasive lobular carcinoma

    Hopefully, you will gain knowledge and support here, and if you need any assistance, please do not hesitate to reach out.


    The Mods

  • mandy23
    mandy23 Member Posts: 103

    Hi @gm6789 -

    Personally….I believe Breast MRIs are the best screening tool, especially for ILC. The problem is, that it may be difficult for you to get it paid for by your insurance company. My original ILC DID NOT show up on an MRI (it was very tiny) and also NOT on the mammo. The only reason I got the MRI was because they spotted widespread DCIS on the mammo. The ILC wasn't found until after my mastectomy. Still, ILC is so sneaky, that I wanted to do everything possible to detect it early.

    I was dxd with ILC in 2003. At that time, they had me have a Mammo and 6 months later, an MRI each year. My insurance company at the time did pay for the MRIs. A few years later, I had to change insurance companies (since it was through work) and they refused to pay for the MRIs. As the years went on, I was having an MRI probably more like every 18 months, since I was paying for it myself.

    The downside (besides the cost) of breast MRIs is that they are known for false positives—meaning they show positive when there actually isn't any cancer. Over 19 years of having MRIs, I never had a false positive.

    In late 2021, I had an MRI which showed something suspicious. Long story and a few biopsies later, I was finally dxd in late 2022. Interestingly, it was IDC in my other breast (NOT ILC). It DID show on the MRI and not the mammo.

    I would take the advice of your MO. However, you might want to ask about an MRI. You do need to be aware that it could be expensive if your insurance company doesn't pay for it. US might be another option that is likely cheaper.

    Nothing is perfect.

    Good luck to you!

  • gm6789
    gm6789 Member Posts: 6

    Mandy - bless you. Any experience with digital 3d computer aided tomosynthesis I think they call it?

  • mandy23
    mandy23 Member Posts: 103

    @gm6789 -

    At the place I have had my imaging done, all mammography is now 3D with CAD unless people don't want it if their insurance doesn't pay for it. So, that's what I've been having for the last few years.

    Of course, no more breast imaging for me now, since I've had mastectomies on both sides!