Suspicious results, what's next?

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reflect
reflect Member Posts: 576
edited January 2016 in Waiting for Test Results

Hello all, I am seeing the surgeon on Friday to follow up on the stereotactic biopsy I had done a week ago.

Mini rant: I had to really push a bit to get copies of my reports. Requested last week from surgeon's office, nothing came, and the portal has nothing at all. Called my PCP office and got "we can't release those reports b/c they aren't ours." Right--they're not the surgeon's either--they're mine. Anyway, she got them to print copies of mammo, US, and biopsy and I have them. I'm an intelligent rational human being who wants all the information available, and don't feel I should have to fight for it.

PRE OP: dx Calcifications of R breast suspicious of DCIS.

POST OP dx: Calcifications of R breast suspicious of DCIS.

ADH, flat epithelial cells, focal arising in columnar cell change with microcalcifications.

Suggestion of MRI, and though not in the notes I am expecting an excisional biopsy (can't remember who said it).

Other info: extremely dense breasts, family hx (mom 2x, paternal grandmother. I have no sisters.). I also take--and need--SSRI for depression.

Please advise me on what questions to ask, and where to "refer" myself next. Is it OK to have the general surgeon do the excisional biopsy? If it's really suspicious, can't I see a breast surgeon to consider all options (prophylactic)? Why have an excisional which may be followed by lumpectomy, and followed by...

I'm not freaking out at all, just thinking ahead. I want to be proactive.

Thanks in advance. You are all so lovely to share so much.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited January 2016

    Hi reflect!

    I think a I'm a little confused about where you are...I understand that you had a stereotactic biopsy. But did you get a pathology report back? What you described sounded more like a procedure report (which you also want to have). Maybe there's a pathology report you still don't have?

    Generally, you would only have an excision all biopsy if you hadn't had a positive biopsy already. That is, even with a B9 result from the biopsy you've already had, they still think they need another biopsy. The actual procedure (excisional biopsy) is (mechanically speaking) extraordinarily like a lumpectomy. But one is diagnostic, while the other is intended as treatment.

    If you aren't comfortable with your medical team, now might be the time to look for a second opinion.

    HTH,

    LisaAlissa

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Thanks LisaAlissa,

    Yes, thanks.there are so many reports. So, the operative report was the "suspicious" above.

    The "final" histology report (is this the final--for now?) for the tissue with calcifications says: ADH, flat epithelial atypia focal arising in columnar cell change with microcalcifications above, for the portion of tissue with calcifications.

    The remaining (no calc) tissue says: benign mammary parenchyma with focal microcalcifications associated with terminal ducts/lobular units.

    I'm assuming they want to know more, that's why the excisional biopsy I think is next.

    The mammo said BI-RADS 4 suspicious (this was prior to the biopsy so not as important now?).

    So I am waiting for Friday morning to meet with the general surgeon who did the stereotactic. I want an idea of what questions to ask if there are any choices for me at this point. Even though there is no diagnosis at this point, if they are doing "excisional biopsy" why not assume it's bad and take a large sample, more like a liumpectomy? If it's suspicious, I'd like it out!

    I think the dense breast make it more likely mammo won't catch things, so is MRI a better tool?

    Thanks for any guidance on questions to ask next, and what I might expect. I am worried of course.


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

    Reflect, they DO take a large sample like a lumpectomy. Mine was about golf ball sized. The only difference in a lumpectomy and excisional biopsy is that the lumpectomy is removing a known cancer with clean margins.


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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Thanks Melissa, because of course I want them to get it all and be done with. But I am getting the sense that I won't be done with it for awhile. It is very comforting to know others are out there with similar questions and worries, and are willing to share your experience and knowledge.

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

    Fingers crossed for you that you don't get an an "upgrade"

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Thank you Melissa.

    So far, no upgrade. ADH only, from the stereotactic.

    I met with the surgeon who did the stereotactic biopsy today, and he agreed with me that an MRI is a great idea, given my "extremely dense" breasts make mammograms harder to read, and the radiologist seemed worried about a possible "spiculated mass" hiding behind the biopsied area. So, after the get approval from my insurer, I'll have an MRI, and then go from there. If nothing else appears suspicious, we'll do the excision biopsy as planned. If it looks like there's something additional, I think I'll meet with an MO first.

    The surgeon indicated exactly the size of a golf ball when I asked how big the tissue sample would be for the excisional, just like yours. I don't know how noticeable that would be for me as I have large (too large) breasts to begin with.

    I feel better with the next steps outlined and will try not to think of of it constantly!

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

    I had an MRI after my stereotactic was positive for "ALH, suspicious for LCIS" because the surgeon wanted to make sure nothing else showed up before she did my excisional biopsy. Nothing else showed up on the MRI. The excisional biopsy confirmed LCIS but nothing worse. I'm a B Cup & mine doesn's show unless my arms are raised over my head. You can feel a cavity, but it is under my breast on the outside corner so not noticeable.

    There really isn't a reason to meet with the MO until your final biopsy results are in. With the ADH you'll be offered tamoxifen or an AI to reduce your risk. If anything worse is found (only about 20% find DCIS or invasive cancer) plans would change anyway.
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