anyone heard of this?

covertanjou

I had a disturbing mammo & US yesterday, and I need your advice and research skills (Leaf? awb? please?)

A short history first: I have been having annual mammos since I was 28 when I had a fibroadenoma removed.  I have extremely dense and fibrocystic breasts. Starting about 1995, my annual mammo resulted in multiple  biopsies of the right breast.  Two years ago, mammo found microcalcs and two 2 lumps.  Lumps were B9, microcalcs led to stereotactic and finally partial mastectomy.  Results;  LCIS/ALH.ADH.

Last years mammo was clear--YAY-- first time in years.

I was expecting that the mammo yesterday would once again be routine, NOT!

After the routine mammo, radiologist wanted two more films of right breast--spot compression.  I saw the mammo from last year and this year--wow definite changes.  From there it is US.  BS and radiologists (yes there were 3 in all checking my breast and films) notice a 'new development" in the site of my excision.  They are not sure if it is cancer.  

Here is where I need your help: while I was on the bed getting my US, the head radiologist is talking to her two colleagues and mentions that she recently attended a LCIS conference.  According to the radiologist -- who seemed to be unaware that I was laying there and could hear her-- said that new research is showing that LCIS may not in fact always be a precursor.  In fact, new research is showing that for many women, the original site of the LCIS and excision may be where cancer appears, and may in fact be the first sign of cancer.  I was in shock.  A) I can't believe she act like I was deaf, and what does this mean for us LCIS women?

BTW, she also told me my right breast is a mess--I wanted to punch her in the face! --with fibroadenomas, cysts, LCIS, ADH, ALH, very dense breasts and fibrocystic changes.

So, I don't know if it is cancer.  They were still examing my films when I left.  

So ladies, I need your help!  What do I do now?  Has anyone heard of LCIS being more than a precursor? 

Thanks in advance. 

ETA--I  made a mistake in my original post:  It seems that LCIS may be a precursor in the same way that DCIS is, NOT just a lesion that elevates our risk. 

JanetM

Haven't heard that yet, but since the research on all of this seems to always be changing I would not be surprised.  I have a follow up appointment with my BS next week so I will ask her what she has heard.  Just another thing to keep us on edge.

KellyMaryland

Mary,

Sorry for your stressful experience.  I'm sure you're anxious waiting to hear about your latest imaging- sending you calm thoughts.  LCIS is so confusing- this you well know.  I've heard it described as many things: a marker for increased risk, a stage 0 bc, "almost" cancer.....the medical community seems all over the board on it.  I'd really like to know where the LCIS conference was so if you find out, please share as I'm always interested in what's being said about it.  I believe somewhere in the literature it was implied that, though certainly not always, sometimes LCIS can morph into invasive disease. (Leaf, do I have that right?).  Please let us know how things are going.  I'll be thinking of you.

Kelly

covertanjou

I found the following articles.  It seems that one subtype of LCIS called florid may be a precursor.  I may be analyzing this incorrectly. Leaf, any thoughts? 

http://www.ncbi.nlm.nih.gov/pubmed/21287281

http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=70&abstractID=40536 

ETA: thank you Kelly.  Yes, it is certainly frustrating. 

leaf

Yes. LCIS has been thought to be a 'nonobligate precursor' for ILC for many years.  One of the first papers I saw it in was this 2006 Li et al paper, using SEER data.

  These results are also consistent with a previous report indicating that LCIS is often followed by ILC,29 and suggest that LCIS may be a precursor of ILC specifically, as one might expect based on its histopathologic characteristics. There is laboratory evidence to support this. E-cadherin is a cell adhesion molecule that is not expressed by almost all ILCs, but this molecule is expressed by almost all IDCs. Acs et al.30 found that 96 of 100 (96%) IDCs expressed e-cadherin, whereas 41 of 42 (98%) ILCs showed complete loss of e-cadherin expression.....With respect to LCIS, our data indicate that LCIS may be a precursor lesion of ILC rather than just an ambiguous risk factor for invasive breast cancer and that localized treatment for LCIS may be warranted given that these women have much higher rates of ipsilateral invasive breast cancer, but much more similar rates of contralateral breast cancer, compared with DCIS patients. http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full

The operative word here is **may**  (not will).   Many papers I've seen opine that LCIS 'may in a small number of cases' be a precursor.  The studies are much too small to define 'small'.  

Note that **IF** an LCIS woman does go on to get invasive breast cancer, in the majority of cases, she will get IDC, not ILC, and in those cases where the woman gets IDC, LCIS is NOT acting as a precursor.  Most studies I've seen show that **IF** an LCIS woman gets invasive breast cancer, these LCIS women get MORE ILC than the average woman who was not previously diagnosed with LCIS.

In this more recent 2008 study, they found about 2 out of 8 metasynchronous invasive breast cancers showed similar clonality between their LCIS and IBC.  (if I'm reading this right.) http://www.ncbi.nlm.nih.gov/pubmed/17380381

This earlier 2004 study found clonality in 'a majority of cases' in synchronous LCIS and ILC. http://www.ncbi.nlm.nih.gov/pubmed/15197797

However, as in all things LCIS, there is controversy.  In the http://www.ncbi.nlm.nih.gov/pubmed/21287281 that you cite, they seem to think that classic LCIS isn't a precursor, in opposition to the papers I cited above.

This 2010 abstract states Lobular neoplasia has been traditionally recognized as a marker of increased risk for subsequent breast carcinoma development; however, molecular studies suggest that it also behaves in a non-obligate precursor manner. We do not know, as yet, how to identify the subgroup of cases that is most likely to progress, but the epidemiological data would indicate that this progression occurs after a long period of time.  http://www.ncbi.nlm.nih.gov/pubmed/20436498

Some people are confused what 'nonobligate' means.  It means the LCIS cells are NOT obligated to become invasive.  They MAY become invasive, but not all of them become invasive (in the lifetime of the person with LCIS of course.)   In the Chuba study, they found roughly up to 20-25% of the women with LCIS went on to get breast cancer. 

Different pathologists do not always agree on the definition of classic and pleomorphic LCIS.  Even if 2 pathologists agree on the criteria for classic or pleomorphic LCIS, they do not always categorize any particular sample as LCIS or PLCIS.  So there is that difficulty in these studies too; some of these women may be 'misclassified'.  (In some of the NSABP studies that show LCIS data, many (all?) of these LCIS women were originally classified as having DCIS.)

I do think this 'may be a precursor' theme in the last 5 or 10 years gives more support that classic or florid LCIS patients should get the area excised.  However, there is, as in all things LCIS, continuous controversy about whether the area should get excised.

I chose to get excised, and I think most (not all) women with LCIS (and nothing worse) do.  But some do not. This paper opines there are circumstances where re-excision is not ALWAYS necessary after LCIS is found on core biopsy. http://www.ncbi.nlm.nih.gov/pubmed/17214794  But again, this, as in all things LCIS, is controversial.

Thinking of you as you go through this.

babycakes82

Mary: That is certainly interesting!  I, too, would love to know where the conference was.  LCIS is a most frustrating dx.  The bs I went to said 40% of her patients choose BPM that have been diagnosed with LCIS.  I have an appointment next week and I am going to ask her how many of the 40% had other things show up on path report and of the 60%, how many get bc?  I would like to know.  I was a nurse for 21 yrs and we were taught to be careful with what patients could hear. I can't believe she did that.  Now it has caused you to be more anxious.  I am very sorry about that. Some people don't think about what they are saying and how it comes across to others...

Leaf-thanks for the great article.  Seems there is still so much unknown. 

Kelly-I agree the medical community is all over the board.  Even  my family is all over the board. 

Some days I feel like I am on a roller coaster and can't get off! But the good news is we have each other to help us through things.  Ladies I thank you for sharing and advising.  You are all very special!

Anonymous

Mary------ before I let myself get too worried about this, I would really like to read a transcript from that conference---any way we can get a link to it? 

From that one article, it sounds like florid LCIS (FLCIS) is yet another kind of LCIS in addition to classic and pleomorphic (PLCIS). 

Babycakes----- I would also be very interested in how many of the 40% had any invasive bc show up in the pathology from their PBMs. (they probably don't keep any long term studies on the 60% that don't do PBMs, but both excellent questions for the doctor).

anne 

covertanjou

Hello to everyone and a big thank you!

Leaf, yes, I think I am not reading some of the info properly.  Thank you for clarifying and for adding your research.

babycakes, I know what you mean about the rollercoaster.  Honestly, I thought I was off it for a while.

Anne, Yes, I think I need to relax and not get too worked up on it.  And, yes, one of the studies dealt with florid LCIS.  So now we have to worry about another type.

It is a good sign I guess that there is new research and new variations of LCIS.  It may make it easier for our drs to figure out how to treat us!

((((HUGS))))) to everyone!