DCIS with ADH, ALH, and Atypical Papillomas

cosister09

Hell All,

I'm new to the community diagnosed in early Dec 2016 with DCIS.  I'm a 43 yr old mom of two boys (14 &12), married and working full time.  In Dec, I had some atypical papillomas that tested negative but drs advised a surgical biopsy.  I had the surgical biopsy and while they were in there they removed what ended up being an area of DCIS.  ( 2cm, ER+, PR+) intermediate grade.  They also removed three atypical papillomas during the surgery.

Typical treatment recommended was lumpectomy to get better margins, radiation and then tamoxifen.  After healing a bit,  I had another Ultrasound and then MRI, another Ultrasound, and biopsy.  That found Atypical Ductal Hyperplasia, Atypical Lobular Hyperplasia, and another papilloma with atypia.  Although the ADH, ALH, and papillomas even with atypia are not cancers, the DCIS is, though stage 0.  I have an older sister who had invasive cancer at 38 - we both tested negative on genetic mutations, etc.

I have more appts this week, and hope to learn if these additional findings change our advised treatment.  I also wonder if this  new papilloma presented between Oct 2016 and now, or if they just didn't see it on the MRIs/US/Mammos. 

Just feeling a bit uneasy and would like to get on the road to treatment.  I don't want overtreat this DCIS, but I also don't want to be having biopsies multiple times a year.  The last biopsy, (a vacuum excision) was horrible, as opposed to the 4 core needle ones previously.  Tired of being "poked."

Is there anyone out there in a similar situation?  When I first heard the option of mastectomy for DCIS, I was shocked thinking it was quite extreme, but now......I don't know.

Thanks in advance.

Dawn

obsolete

Hi Dawn, I'm so sorry about your never ending breast issues. You might check out the "Benign Papilloma" thread after looking over "DCIS" threads. I'm very sorry about your situation, but it often helps to seek 2nd opinions from breast surgeons and oncologist from NCI centers. Hugs and best wishes.