Info Please..Leaf? Beesie? everyone?

covertanjou

I was dx'd with LCIS/ADH/ALH in  Aug. 2009.  I had CNB, stereotactic and finally excisional.  Have been going for 6 month mammos and last August "something" showed up at site of excisional.  My dr and I decided to wait and see.  U/S Feb 7 showed more prolifertation, so I had a CNB. Results: ADH & flat epithelial hyperplasia and mircocalcs.  Recommendation is MRI and surgery.

Questions for you wonderful women:  have any of you had ADH and other lesions show up so soon after an excisional?  What does the fact that I had only 1.5 years of clear mammos before more lesions show up mean? What are the chances that these lesions will reveal more with surgery (studies put the risk of it being DCIS or invasive at between 30-50%).  

Any help/advice/comfort is appreciated. 

Wabbit

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! 

Beesie

I haven't been in your situation and I haven't been able to find any articles or research that talks about the recurrence of ADH so the best I can do is offer you my thoughts.

My first thought is whether it's possible that the ADH is left over from the previous round of ADH.  Since it's in the same area of your breast, might it be that a few ADH cells were missed and never became evident until now? If more ADH continued to develop from that small area, then it could show up now as a larger area whereas previously it was just a few cells.   

My second thought is that maybe you have cells that are prone to develop into ADH.  I don't know however whether this would mean that you are more likely than the average women with ADH to develop BC.  Most ADH doesn't continue to develop to become DCIS (and then invasive cancer if not removed as DCIS) - it always remains ADH, even if not removed. Whether having ADH develop twice (if that's what's happened) means that your risk is higher is a question for your doctor. I'd be interested to know the answer.

"Among women with atypical hyperplasia (ductal or lobular), whose risk is 4 to 5 times normal, about 20 to 25 women out of 100 would be expected to develop breast cancer within 15 years."  http://www.cancer.org/acs/groups/cid/documents/webcontent/003180-pdf.pdf

Where do you get the information that the risk of finding DCIS or invasive cancer is between 30% to 50%?  Most of the sources I've read put the risk of finding something more serious at about 25% for those who are having an excisional biopsy for ADH - my surgeon actually told me 20% when I had my excisional biopsy and I know I've studies that support that.     

"If ADH cells are found on a core biopsy, an excisional open breast biopsy is necessary so more tissue can be examined. Approximately 25 percent of the time when ADH cells are found on a core biopsy, the cancer is determined to be early stage."   Atypical Ductal Hyperplasia (ADH) Diagnosis: Johns Hopkins Breast Center

covertanjou

WR--Thank you!

Beesie--Thank you for your help. I have spent the past few days researching, and I have to find the different articles.  I have to admit that when it comes to understanding all these studies, I don't!  I get the gist of them, but I also wonder if I am only seeing worst-case scenarios, or if I am reading what I most fear.

It is possible that some left over ADH cells were not removed in the last surgery.  I really don't know, and I will be asking my dr about that.  I know that I am very lucky to just have ADH/LCIS, etc.  I am just afraid of what this means for me.

http://www.ncbi.nlm.nih.gov/pubmed/21371081 

http://www.ncbi.nlm.nih.gov/pubmed/21764539 

 

 

http://www.ncbi.nlm.nih.gov/pubmed/21128240 

  http://www.ncbi.nlm.nih.gov/pubmed/22244207

shabby6485

Hi there, I am in the same boat.  Previously excision showed ALH (MICROFOCUS only). Now after a core for microcalcs, I was diagnosed with FEA (flat ep. atypia) and need more surgery.  I am beyond upset.  I am also compulsive and researched as many studies about % of upgrades to dcis after atypia.  According to what I read, it is about 20 %.  Hoping that is the case.  I am so sick of being afraid of this damn disease.  It is really tapping the joy from my life.  My surgery is the 29th.  Prayers to you...

covertanjou

HI shabby, sending out positive vibes to you.  I know how frustrating it is, even though I realize how lucky I am, so I totally understand where you are coming from.  I don't know when my surgery is, or if I will have MRI first.  I haven't met with my dr yet. On Friday, I needed to go back to the hospital where I had my CNB cause I have a huge hematoma at the biopsy site. My dr was not there, and It was the radiologist who gave me my results.  I will probably speak to my dr tomorrow and figure out where I go from here.

((((HUGS)))) shabby. 

Anonymous

covertanjou--all the studies I've ever seen have said 15 to 30%, not as low as we would like, but certainly better than 30 to 50%. It's quite possible they just found more ADH that was there all along, and in that case it really wouldn't change your overall situation. Praying they find no DCIS or any invasive bc.

Anne 

covertanjou

Anne, I knew I could count on you!

Have any of you ladies had MRIs?  Is it better at determinig if there is more ADH or LCIS?  I know there are false-positives, but I wondering if it is better at dxing lesions and cancer? 

shabby6485

Hi anne & convertanjou,

anne, is the 15 to 30 for just adh or fea?

I heard that an MRI would show cancer years before a mammo?  Anyone hear this?

1Athena1

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

covertanjou

shabby, what I have read is that the rate for FEA being something else is less than 30%.  I can tell you that the last time I went through this, my core was LCIS and excisional did NOT show cancer.  So, the odds are on our side.

Athena, thank you dear friend. 

leaf

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.