diagnosed with ADH

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muzakmom1
muzakmom1 Member Posts: 41
edited August 2014 in High Risk for Breast Cancer

After nipple discharge I had clear mammogram, diagnostic and ultrasound. Ductogram showed blockage so I was referred to surgeon for excision. Met with surgeon today and papilloma is benign, but atypical ductal hyperplasia. He wants to do another excision to get "clear margins"  and he is referring me to a oncologist. 

Any ideas or suggestions. I have a consultation with my primary care provider tomorrow as I trust her and she can explain things in a way that make sense and give me her opinions. Which I value. 

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  • momoschki
    momoschki Member Posts: 682
    edited July 2014

    My understanding is that clean margins are not relevant when it comes to ADH -- that the excisional biopsy is done to make sure that the ADH is not obscuring something malignant, which I believe it does about 20% of the time.  Perhaps others can chime in here to make sure I have my info straight.  

    The ADH increases your vulnerability to BC 4-5x that of a woman with no identifiable risk factors.  This is NOT 4-5x the approx 12% average risk, but instead usually a 20-25% lifetime risk, which may be increased by other factors, such as a strong family history.

    Your oncologist should be able to give you a better picture of your own individual risk.  Feel free to pm me if you have other specific questions.

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  • muzakmom1
    muzakmom1 Member Posts: 41
    edited August 2014

    Spoke with surgeon last week, he consented to an MRI...however our lovely insurance company has denied the MRI.  I am going to go forward with the MRI, but now know that I will not have a peace of what is really going on, because they just happened upon this ADH, none of it showed up on imaging...

    FRUSTRATED

    Back to surgery again on Wednesday.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    Hi muzakmom - I too had an incidental finding of ALH and ADH. My BS sent me to a genetic counselor to put a number to my risk. The GC who is also a BS said generally ALH and ADH don't show up on imaging.  My BS also told me that if I'd only had ADH he woundn't be that concerned  but he felt the ALH was a greater risk because it can be a marker for BC in both breasts. From what I've seen on these boards an ADH diagnosis should reasonably get you every six month screening alternating with an MRI and mammo. 

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  • muzakmom1
    muzakmom1 Member Posts: 41
    edited August 2014

    Surgery complete. I'm home resting. Same procedure but this time they called it a lumpectomy rather excision. Meet with the surgeon next Thursday.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2014

    crossing my fingers for only B9 results!

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  • Lilith08
    Lilith08 Member Posts: 163
    edited August 2014
    muzakmom1,

    glad to hear you've had your surgery--hoping all will be well! I recently had excision/lumpectomy for ALH. It was not seen on mammogram, but picked up on MRI. Not palpable, not visible with ultrasound, and it sounds like that's generally the case. I agree with farmerlucy--I got the impression the clear margins they were looking for was to be sure there was nothing cancerous in the nearby tissue.

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  • momoschki
    momoschki Member Posts: 682
    edited August 2014

    Glad to hear your surgery is behind you-- hoping you get good news next week!

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  • muzakmom1
    muzakmom1 Member Posts: 41
    edited August 2014

    Hi ladies...

    I've spent the last few days in a stupor and realized I've been nursing my whole right side when I started getting sharp pains down my shoulder blade and popping in my shoulder. 

    I've had a labrum repaired and several bouts of PT from an old worker's comp injury. Started stretching it like crazy and alternating heat and ice, along with aleve.  Praying this doesn't get any worse... did anyone else experience the frozen shoulder or muscle pain. I noticed it after surgery two weeks ago and thought I was being more proactive this time but apparently not. 

    4 days til I meet with my surgeon...

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