Just got path results from biopsy (DCIS)... what happens next?

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ducky179
ducky179 Member Posts: 43
edited January 2016 in Diagnosed and Waiting for Test Results

I know I have a referral to the Breast Care Center, and that there is a team of specialists that work together. But I'm not sure what tests still have to be done before we come up with a treatment plan. I'm going back and forth between wanting to take it day by day and just wait for my first appointment vs wanting to have all my ducks in a row and research done so I'm ready at my first appointment with questions and an idea of what I want done.

What I know from biopsy: DCIS intermediate grade with necrosis and calcifications, ER strong positive, PR weak positive

As far as I know, it's just limited to one area of one breast. But they only did magnified images of the one area prior to telling me I needed core biopsies.

I'm 42 with a strong family history of breast cancer (maternal and paternal sides), but no first degree relatives.

I'm also BRCA negative--had that testing several years ago already because of family history.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2015

    Hi Ducky-

    We want to welcome you to our community here at BCO. We're sorry you find yourself here, but we're glad you've found us, You've come to the right place for support as you begin down this road!

    Most of the tests have probably already been completed, on the tissue that was removed at biopsy (and lead to your diagnosis). If you have a copy of your pathology report, you'll see what was done and the result listed. You can learn more about some of those tests and what the results mean here: http://www.breastcancer.org/symptoms/diagnosis. If there is more info that your doctors need that isn't already on your path report,

    Armed with your pathology report, you'll sit down with your doctors at the breast specialist and come up with a treatment plan that works for you. Your first visit will be very informative, so write everything down, and write down any questions you have ahead of time. We know it all seems very overwhelming, but once you've met with your doctors and have a treatment plan, you'll start to feel more in control.

    Please keep us posted on how your appointment goes!

    The Mods

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  • ducky179
    ducky179 Member Posts: 43
    edited December 2015

    Thanks. Reading through those pages led me to do more research on the necrosis. My path report specifically says "expansive necrosis" which looks like another way of saying comedo necrosis. I also asked my PCP about some of the other results that I was expecting to be part of the report (like HER2 results) to see if they are pending or still have to be ordered. I'm assuming that's probably a question for the breast specialist, but the PVP can probably tell me if tests are pending in the system.

    It's difficult to wrap my mind around having this diagnosis and just waiting...

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  • Annette47
    Annette47 Member Posts: 957
    edited December 2015

    Don’t be surprised if they don’t do HER2 testing on DCIS ... not all places do because the significance of HER2+ in DCIS is not the same as it is in IDC. Once you meet with the breast specialist you’ll have more of a plan as to type of surgery and then follow-up treatment. I had a lumpectomy, radiation, and have been on Tamoxifen for 3 years and it’s all very doable. Nothing will be set in stone though until your surgery (whichever you have) is complete and they can do a complete pathology on the tumor ... about 20% of DCIS cases end up being upgraded due to the presence of a small amount of invasive cancer, although in the vast majority of cases (such as mine) it doesn’t really change the treatment or even prognosis much at all.

    You are in the absolute worst part of the process - knowing something is wrong but not yet having a plan to deal with it ... I promise it will get better!

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2015

    Hi Ducky:

    Sorry about your recent diagnosis. I felt a lot better after I met with the breast surgeon for some reason, maybe because I finally understood from her explanations what DCIS is and that it has a very favorable prognosis.

    When you meet with the surgeon, you may wish to ask whether any further imaging is recommended to inform surgical planning. Sometimes, an MRI is done for this purpose.

    I am impressed that you have already completed the reading assignment from the Moderators! Here is some more excellent reading for you.

    I found this page with illustrations to be helpful for understanding the terms that describe the appearance of the cells in the duct, such as "cribiform", "solid", and "comedo necrosis".

    http://www.breastcancer.org/symptoms/types/dcis/di...

    Many new members find these famous posts from Beesie to be extremely helpful. You may wish to bookmark them and read them over a few times. (You may have to scroll a bit.)

    A layperson's guide to DCIS:

    https://community.breastcancer.org/forum/68/topic/...

    Lumpectomy vs Mastectomy Considerations:

    https://community.breastcancer.org/forum/91/topic/...

    Although you were tested for BRCA in the past, and were negative, you may wish to ask for a referral back to a Genetic Counselor to discuss the possibility of broader multi-gene panel testing and whether you might be interested in that or not. On the plus side, learning of a high risk mutation can inform choices about screening and/or treatment. On the other hand, caveats like the lack of consensus practice guidelines for pathogenic mutations in some genes, the absence of effective screening and/or risk management options for some associated cancers, the uncertainty if a variant of unknown significance is found, and relatively undefined risk presented by some genes can be worrying. Because of these latter concerns, I have only had BRCA testing to date, but many have chosen the option of broader panel testing.

    Good luck!

    BarredOwl

    Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

    Bilateral mastectomy and SNB without reconstruction 9/2013

    Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

    Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

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  • windingshores
    windingshores Member Posts: 704
    edited January 2016

    Just to repeat what someone else said about the reliability of HER2 after biopsy, especially with DCIS which is often positive.

    I had a positive HER2 after biopsy and negative after surgery that was retested more thoroughly and was definitely negative. I was told that most likely some DCIS, which can be positive, might have contaminated my biopsy sample.


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