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IDC with Lobular Features — looking for resources

kellywilk Member Posts: 2

JUST diagnosed and this is my first stop. MRI is happening next and will continue workups, but I was given this diagnosis of IDC "with lobular features" and having a hard time finding information specific to that, especially the "with lobular features part." They also biopsied one lymph node and it came back positive. Does anyone out there have a similar diagnosis and have any insight or experience to share?


  • moderators
    moderators Posts: 8,287

    Hi Kelly and welcome to,

    We're so sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our amazing Community an awesome source of advice, information, encouragement, and support -- we're all here for you!

    We'd suggest you post also in the Mixed Type Breast Cancer forum, where others can weigh in with their experience with an IDC with lobular features diagnosis.

    We hope this helps and that you get some responses soon! Let us know if you need any help at all.

    --The Mods

  • simonerc
    simonerc Member Posts: 154

    Hi Kellywilk and “welcome” to the club nobody wants to join. My doctors at Johns Hopkins say IDC with lobular features in NOT mixed type. It is IDC and some cells literally look a bit like lobular cancer cells but are not. They say prognosis and treatment goes just as regular IDC. Good luck to you. Take it day by day. Keep up posted

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Hi, kellywilk. I am not a doctor, but a patient who been studying lobular cancer for ten years, so please ask a knowledgeable oncologist about what I say. If a pathology report shows E-cadherin negative, this would indicate CDH1 loss, which is the hallmark of lobular breast cancer. If it shows e-cadherin positive, it is considered IDC. But the following suggests that IDC with lobular features may be more like mixed or ILC even so:

    Invasive ductal carcinoma with lobular features: a comparison study to invasive ductal and invasive lobular carcinomas of the breast

    "Our data suggest that although IDC-L may be a variant of IDC, with >90 % of cases being E-cadherin positive, the clinical and biological characteristics are more similar to that of ILC."

    I read recently that mixed should be treated as ILC. This would have implications for choice of imaging modality, hormone therapy, length of hormone therapy, reliance on Oncotype, etc.

    Here is a site with lots of scientifically vetted information about ILC:

    "Research indicates that ILC is a unique histological subtype of breast cancer with distinct biological and behavioral differences."

    Please let us know what more you find out.

  • norcals
    norcals Member Posts: 209

    Hi Kellywilk.

    I have triple negative bc that is IDC with lobular features. It is my understanding that imaging for IDC with lobular features can be difficult. Before I was diagnosed, the NP who performed the breast exam told me that there was no lump and to just go home because I didn’t have breast cancer. I insisted on a mammogram and the tech that performed the mammogram told me she didn’t think it was breast cancer because it didn’t look like typical breast cancer. Thankfully, the radiologist decided to do an ultrasound and biopsy. A few weeks later I was told I had stage 3/4 triple negative breast cancer. My MO does not believe it is necessary to have any thing other than once a year mammogram. I don’t agree with her, but I don’t know of any protocol that requires additional scans for IDC with lobular features. If anyone can point to an article on how to monitor IDC with lobular features, it would be much appreciated

  • obsolete
    obsolete Member Posts: 333

    Estrogen switches pure mucinous breast cancer to invasive lobular carcinoma with mucinous features

    Purevsuren Jambal et al. Breast Cancer Res Treat. 2013 Jan.

    Invasive Pleomorphic-Type Lobular Carcinoma of the Breast Presenting as a Mucinous Carcinoma

    Published04 Aug 2019

  • ctmbsikia
    ctmbsikia Member Posts: 758

    I also have a mixed diagnosis even though my profile says IDC. The one article Shetland linked I've read before, in that IDC-L maybe a variant of IDC. E-cadherin I can not find on my pathology, so I don't know if it was positive or negative? Not sure it makes much difference treatment wise? My oncotype was 17. My sister has lobular type. Pretty sure I'm being treated as IDC.

    Here's another study link. Copying the last paragraph. It is some interesting stuff, however my own personal non professional conclusion is that the "with lobular features" isn't that much of a clinical difference in your prognosis and treatment.

    Mixed ductal‐lobular carcinomas: evidence for progression from ductal to lobular morphology - McCart Reed - 2018 - The Journal of Pathology - Wiley Online Library

    This study demonstrates that the different morphological components present within an MDL tumour are clonally related and not the result of a collision of multiple independent tumours, thus supporting the idea that MDL tumours represent a distinct clinical and biological entity. We show that, in some cases, the divergence of the morphological components may occur early during tumour evolution (both DCIS and LCIS are present) or later during tumour progression (only DCIS detectable). The cases with late-occurring divergence may arise via a ductal-like pathway of progression, and these data emphasize the possibility that a lobular-like phenotype can arise via a modified ductal pathway. As previously detailed 3, the clinical conundrum surrounding a mixed tumour is that the good prognostic features of one component may have no prognostic value in the presence of a component with more aggressive features, regardless of which is the most conspicuous component. Clinically, there is little value in broadly categorizing MDLs into either lobular-like or ductal-like, and a more detailed assessment is required. Indeed, we have shown that the morphologically disparate regions harbour mutations in several breast cancer driver genes, which may predict targeted therapeutic options in the future. The evaluation of the true molecular profile of breast tumours is greatly influenced by tumour cellularity, and, critically in terms of discovery approaches, known proportions of morphologically distinct clones. The molecular analysis presented here highlights the genomic differences and similarities between the morphological regions of the MDLs, and contributes to our broader understanding of the genetic picture of breast cancer.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    To expand on my previous post: While in the past ILC and mixed type and IDC-L were seen as not different from ILC, more and more, differences are being studied and recognized. I have heard from more than one ILC researcher, and you can read in scientific papers, that ILC, along with mixed type and IDC-L, should be treated as ILC. Here are just some of the differences for ILC, mixed type, and IDC-L:

    Imaging modality--ILC types can be harder to image and there may be some trial and error finding what mode works best for a particular patient. (Mammogram, ultrasound, PET-CT, CT with contrast, MRI)

    Metastasis sites--While IDC's typical metastatic sites are lungs, liver, bones, and brain, for ILC types we must add reproductive organs, peritoneum, gastrointestinal tract. And there are unusual sites such as the eye etc. So this needs to be kept in mind if a patient is having symptoms, and when reading scans.

    Choice of Hormonal (endocrine) therapy--ILC may not respond to tamoxifen, so aromatase inhibitors and Faslodex may be better choices.

    Reliance on Oncotype--This patient cohort used for validation this test was mostly postmenopausal IDC. Researchers have been working on a lobular-specific test called LogSig which appears to be more accurate for ILC types. So to my mind, relying completely on Oncotype for treatment decisions with ILC may not be wise.

    Timing of recurrence--ILC is more prone to late recurrence, so it is worth considering longer duration of endocrine therapy.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    ctmbsikia, perhaps your onc needs to ask the pathologist to review your slides and say whether e-cadherin is present or not. Interesting that your sister's diagnosis was lobular. I have a close relative who, like me, has a lobular diagnosis. Also fyi, ILC often has a midde-range Oncotype score.