Anybody with LCIS and ADH?

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Wicked
Wicked Member Posts: 141
edited November 2016 in LCIS (Lobular Carcinoma In Situ)

Just wanted to get a sense of how much my risk has gone up with the addition of the ADH to the diagnosis.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2016

    Wicked, it is fairly common to have an alphabet soup of "junk" in our breasts I think a genetic counselor is the only one who could stratify that, and they don't do a great job on individuals for just LCIS

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  • Wicked
    Wicked Member Posts: 141
    edited August 2016

    Melissa, when first diagnosed with LCIS, I asked about genetic counseling. My BS said she felt it was not warranted because I am 49 and "had already passed the danger years" (20s and 30s). I guess she feels if there was something to be found genetically I would have shown symptoms before now. The ADH was only found on lumpectomy, not biopsy. Only LCIS on the biopsy. The full pathology is not back yet because my tissue samples have been sent to immunohistology. Not sure how common that is. The pathologist wrote that he is concerned that due to my "dense, sclerotic stoma" he feels "finding lobular carcinoma is a diagnostic challenge." He wants more scrutiny of the sample.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2016

    wicked-------while the LCIS itself already confers a greater risk level than ADH (30-40% for LCIS and only 20-25% for ADH), I"m not sure if it changes at all if you have a combination of the two. I'm not sure who would know that specifically: oncologist, pathologist, or genetic counselor. My oncologists always seem to be giving a "guesstimate" whenever I ask, my genetic counselor wasn't giving out any numbers, I never have asked a pathologist, but now I kinda wished I had.

    anne

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  • HeatherJeanne
    HeatherJeanne Member Posts: 16
    edited October 2016

    Wicked,


    I am curious what you were told about the addition of ADH? I just got ALH added to my history, so I had the same question

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  • Wicked
    Wicked Member Posts: 141
    edited November 2016

    HeatherJeanne, when I had my LCIS excised, they found ILC, so it became a completely different ballgame. ADH is the least of my worries.

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