Info Please..Leaf? Beesie? everyone?

Just sending you a (((hug))) for having to deal with this crap again.

I hope some of our experts see this and chime in here ... I would like to become educated on this topic also.  My sister just went through the ADH experience and I did not know much about it.  Except that it sucks ... it all sucks! 

((((Mary)))) No knowledge to share. Just wishing you the best results.

LCIS is usually multifocal (occurs in more than 1 spot in a breast) and often bilateral (in both breasts.)  They know this because LCIS used to be treated routinely by bilateral mastectomies and they could look at the mastectomy specimens. 

I don't know if your core biopsy in the same site as the excision would be considered possibly multifocal or not.

I had LCIS on my first core biopsy, and they found ALH on a subsequent biopsy  due to calcifications as well as DH (ductal hyperplasia but not atypical) (inches away in the same breast).

I'm just going to talk about this one 2007 study of women with atypia from the Mayo (which is only one study, thus probably is NOT the big picture, but its all I have time to find). But this is a paper I can find details about multifocal atypia and is from a reputable institution, and the paper is peer reviewed. http://jco.ascopubs.org/content/25/19/2671.full

They looked at 331 patients with atypia: about 43% had ductal atypia, 53% lobular atypia, and the rest (about 4%) both ductal and lobular.

60% of the group had one (?known) focus of atypia, about 25% had 2 (?known) foci, and 15% had 3 or more foci.co.ascopubs.org/content/25/19/2671/T1.expansion.html Unfortunately, it doesn't specify whether these women with multi-focal atypia had ADH, ALH, or both.

In the edition of Susan Love's Breast Book I read when I was first diagnosed (2006), she said that  almost all ducts were intertwining, but not intersecting.  The same could NOT be said of lobules, because it was too complex. (They found this out by injecting wax into  the ducts of cadaver female breasts.)

This paper found a cumulative breast cancer risk of 29% after 25 years for the entire group. However,

Stratification based on number of foci of atypia demonstrates a cumulative incidence of 18% for a single focus, 45% for two foci, and 48% for three or more foci of atypia at 25 years of follow-up (Fig 3).  <This paper did count DCIS as a subsequent breast cancer, unlike some other studies.>They also found a higher incidence of breast cancer in patients who had multifocal atypia and calcifications at high risk (>50% incidence of breast cancer at 20 years). 

However, these last two groups only had a sample size of 81 women with 2 foci and 51 women with 3 or more foci.  These aren't many patients.  The mean followup was 13.7 years, so the number of women who had a 25 year followup were undoubtedly quite small, so these numbers would be all the more uncertain.

Some may question whether multifocal atypias may actually represent subtle in situ carcinoma, particularly those of the ADH type. In cases of multifocal ADH, it should be emphasized that individual foci arose in separate and distinct terminal duct lobular units, none of which measured more than 2 mm. Hence, these examples failed to exhibit the confluent degree of cellular proliferation requisite for a diagnosis of DCIS. We submit that more widespread distribution of atypical foci within breast tissue signals a larger burden of at-risk tissue that has progressed along the continuum toward breast cancer. The data presented in this article provide evidence that the extent of premalignant breast change is related to subsequent cancer risk. Since this is the first report of the clinical relevance of this histologic finding, we recognize the need for validation and plan to evaluate this factor in a more recent cohort from our institution. Furthermore, we hope that other research groups with large numbers of patients with atypical hyperplasia will also examine the relevance of multifocal atypia in their study sets.  http://jco.ascopubs.org/content/25/19/2671.full (emphasis mine)

Frankly, I don't understand the relevance of the 2mm length in the previous paragraph, so there are certainly parts of this study I don't understand.   Maybe somebody else here understands histology/pathology more than I do.

When they found more ALH on me at a different site than they found my LCIS (but in the same breast), I did NOT have another surgical excision.

This is only ONE study, and the patient number are QUITE SMALL.  They have 51 patients with 3 or more spots of atypia, and on the average followed them for about 14 years.  So, they must have had not 25 people who got breast cancer (DCIS or something worse) in 25 years, but probably something much less than that - they undoubtedly extrapolated their data to get to the 48% at 25 years figure, with (I'm totally guessing) maybe 10 or 15 patients.  

As you know, different studies differ.  This is just ONE study.  In the discussion section, they point out how other studies have found opposite findings on several aspects of data.

So, as others have said, a lot of things are unknown.  This 2009 study opined that the criteria for atypical epithelial forms from ADH from DCIS should be re-thought as there is a lot of disagreement as to where to put what into different catefories.  http://www.nature.com/modpathol/journal/v23/n2s/full/modpathol201056a.html

But, as awb and others have said, your chances are quite good  (some 60-90% chance) they will find 'nothing worse' in your surgical excision.