ADH and ALH found in medial margin after lumpectomy

mhershel

I just had a lumpectomy for DCIS last week- just got the pathology back and the medial margin was positive for atrypical dustal hyperplasia AND atypical lobular hyperalsia- does anyone know if radiation kills both of these, one, none?

cphealing

I have heard conflicting information on this.   My RO said yes,  but I have read no.   I have the same thing going on.   They got all of the DCIS so I had clear margins for that but the ADH and ALH was extensive.   My surgeon and MO were both saying move forward with Rads and get on with my life but I was just not so comfortable with all of that pre-cancer in my tissue.  I went for a second opinion and now my new oncologist (who does nothing but breast cancer) said I need more surgery and should not consider rads until I have clear margins for the ADH.   I am going to see a new surgeon next week but it sounds like this is blind surgery since they don't know how much to take out.  (can't see it on mammogram or mri - very dense breasts)  My new oncologist was really encouraging me to have a BMX.   He is concerned about what else might be lurking in there and also said i would be high risk now so I would likely be facing lots of future biopsies,etc if I don't do the BMX.  I am a single mom and I gotta get back to raising my daughter.  Can't have all of these cancer distractions.

mhershel

Thank you for your response.  I feel the same way about those cells "lurking" around in there- I should have gone with my original instincts and gone to a cancer/breast center instead of using the general surgeon here in town- oh well, live and learn.  Thanks again for sharing your experience!

cycle-path

"I am going to see a new surgeon next week but it sounds like this is blind surgery since they don't know how much to take out."

When a lumpectomy is done, the surgeon should have stained each side of the tissue a different color. Let's say the "north" side is stained blue, the "west" side is stained yellow, etc. The pathology report should refer to this.

The path report will then say that the margins on the north/blue side were clean, but the margins on the west/yellow side contained ALH or ADH or whatever.

That's how they know where to remove more when they do a re-excision. It's not "blind" surgery as long as the surgeon did the staining properly and the pathogist reported the results correctly. 

cphealing

wow!  very interesting.   thanks for that info regarding the path procedures.   I didn't know that.  That explains how they know where to start.   Now I guess what they don't know is how much tissue to take out since it isn't on MRI or Mammograms.   Only found in pathology.  The Oncologist said he would like to see 5cm clear margins.   Sounds like a lot when I have already had something much larger than that already taken out.  B cup and quickly shrinking...... 

cycle-path

It's true they don't know precisely how much to take out, but once again the pathology report will probably have given them some information that will help them figure it out. For example, if the ADH/ALH extended along the entire length of the yellow side of the lumpectomy, they might want to cut more than if it only extended along about half of it. Additionally, if the cells along the yellow margin were mostly low-grade ADH/ALH they probably won't cut too much more; but if the cells were mostly high-grade ADH/ALH they may cut quite a bit more.

Are you sure he said he wanted 5cm margins or 5mm margins? I think my BS wanted 2 or 3 mm margins, and she got 'em. 

cphealing

I had a re-excision this past week to get clear margins on the extensive ADH and ADL they found after my first lumpectomy.   The surgeon called last night and said they found more DCIS and now I don't have clear margins on what they took out from that.   Feeling a little "raw"  with this latest news.   Definitely need further surgery but now am more seriously leaning towards a BMX.  This confirmed my greatest fear which was what else is going on that we haven't been able to see.  I have very dense tissue and the MRI that was previously done did not detect any of this.  I have a follow up appoint with the MO and Surgeon this week to understand my options and come up with the next step but seriously "bumming" this weekend.