Severe atypia??

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pattimay
pattimay Member Posts: 72
edited June 2014 in High Risk for Breast Cancer

My pathology report was sent out to another hospital because they were "on the fence" if after an excisional biopsy I had ADH or DCIS.  I'm relieved it came back as ADH and ALH but the report says focally severe but not enough to warrant a definitive diagnosis of DCIS.  The foci of adh are 0.8cm from the medial margin and 1.0cm from the lateral margin.  I'm worried about how it was worded that could not give a definitive diagnosis of DCIS.  Especially since it was stressed that I had very severe atypia.  My surgeon feels like he got the worst of the atypia out and I will be starting Tamoxefin after seeing a onc.  Has anyone had severe atypia turn over to ADH on the next mammo.  Thank you again ladies .

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Patti--it would definitely be a good idea to get a 2nd opinion as ADH and DCIS are treated differently. Good that you're seeing an oncologist and starting on tamoxifen preventively. I was diagnosed 6 years ago with LCIS (  a step further along the bc spectrum from ADH/ALH with double the risk); I took tamox for 5 years with minimal SEs, continue with high risk surveillance of alternating mammos and MRIs.

    anne

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  • LISAMG
    LISAMG Member Posts: 639
    edited December 2009

    "Severe" atypia within ADH are considered to be similar and not another step.  The important question seems to be the fine line of where ADH becomes DCIS, both can be be rather subjective by the pathologist performing the interpretation. If the second opinion stated ADH/ALH, it seems you have more clarity. This certainly requires monitoring and perhaps more opinions if you are not comfortable. Chemoprevention seems like a reasonable option as well. Have you had an MRI yet? If not, it may be the next step I would definitely consider too.

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  • pattimay
    pattimay Member Posts: 72
    edited December 2009

    Thank you all for the info.  I have not seen an onc as of yet.  "Waiting till after holidays.  My surgeon gave me prescriptions for ultrasound and Mri with contrast . I'm suppose have this have this done in.March .  Just wondering though what the MRI would possibly show him at only three months post excisional biopsy.  What would they be looking for?  What more info would it give him after being diagnosed with the severe atypical ductal hyperplasia?  Would it show that he didn't get all the atypia out?  I'm confused on this.

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  • LISAMG
    LISAMG Member Posts: 639
    edited January 2010

    Patti,

    If you never had a pre-op MRI, this could be a very valuable diagnostic tool to get a clearer picture of what may be going on bilaterally. Especially with ALH being a higher risk factor and for both breasts. You may wish to consider this type of imaging post biopsy when you are healed. Its always standard of care to f/u with breast imaging studies at 6 months after any biopsy. Do you have any family history of BC?  Hope this helps.

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  • pattimay
    pattimay Member Posts: 72
    edited January 2010

    Thank you all for writing.  I have no breast cancer in the family.  My mom just turned 80 and the gyno still sends her for mammos.  I always thought that the one health problem I would never have to be concerned about is breast cancer since my mom's mammo's are always normal.  My excisional biopsy was a very large area .  He took 25% of breast tissue.  Pathology report said 5.5 x 4.0 x 1.7 cm segment.  My main concern is the wording "focally severe" area of ADH.  But then when it was sent out to Beth Israel Hospital in MA that pathologist said he felt it wasn't severe enough to warrant a DCIS diagnosis.  I mean how severe does it have to be??? My surgeon gave me prescription for having a bilateral MRI with contrast done for March and also an ultrasound.  What would they be looking for with the MRI? I'm afraid that I'll need to have another biopsy done again.  At this point surgeon said that if it would turn over to DCIS I'd have to have a mastectomy since he can't take anymore from my small b cup breast.  My surgeon never mentioned the ALH to me but when I got my path report mailed (forgot to ask for a copy at followup from surgery) this is what it said. Along with the ADH there was flat epithelial atypia, intraductal papillomas(they were taken out), usual ductal hyperplasia, apocrine metaplasia, cysts, biopsy site changes and calcifications associated with ADH.  Thank you ladies for all the info you've given me.  It helps me to ask the right questions and have a better understanding of what going on.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Pattimay---sounds like your 2nd opinion says it is ADH, not DCIS, so that is excellent news! The MRI will help to make sure nothing else is going on----it sounds like they are just being very thorough and checking all bases, which is a good thing.  (I've been doing high risk surveillance and preventative medsfor over 6 years due to LCIS (a step further along the bc spectrum with double the risk of ADH) and family history of bc---so if you want to talk, feel free to PM me with questions.

    Anne

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