Posted on: May 30, 2012 04:26 PM
Here are links regarding how ILC originates from LCIS.
Two good resourses:
An amazing resource
If you follow the clickable trail of documents in each article, you may get lost for three days, as I did!
ILC must be noninvasive first even as it may not be genetically related to an adjacent LCIS. I found no information that says ILC is not LCIS first. The topic is super interesting and I look forward to what anybody thinks. If you have links, go ahead and post them, if not, please feel welcome.
Also, below is the link to the related thread that gives some background on this topic.
Posts 1 - 30 (40 total)
May 30, 2012 08:00 PM mary625 wrote:
Well, i don't have any links, but I can tell you that I had both LCIS and ILC in my tumor. Both were found during original biopsy and final pathology. In fact, they were so stumped by it that they took an extra 5 days or so in the final pathology to declare that it was what it was. So I do believe that I am proof that LCIS can lead to ILC in the same spot. I don't know how frequent it is or not. I'm looking forward to reading the links above.
May 31, 2012 12:14 PM msippiqueen wrote:
Here's a link that's scientific about how LCIS proceeds ILC, but written in an understandable way.
At the bottom of the page are links for other breast conditions and their explanations.
Jun 1, 2012 12:56 PM msippiqueen wrote:
I was assured during a phone consultation with a pathologist this morning that;
1. All ILC arises from LCIS
2. An Invasive Lobular Cancer always is Lobular Cancer InSitu first
3. ILC doesn't appear anywhere in either breast without being LCIS first
4. You must have LCIS before you have ILCS
Jun 1, 2012 05:19 PM, edited Jun 1, 2012 05:20 PM by msippiqueen
Clarification point: delivering the factual information that LCIS precedes every ILC is the only fact I make when I post: All ILC was LCIS first.
Any additional side issues about LCIS or ILC is not made or implied.
I have been accused of misinforming women to scare them and told I construed the fact out of thin air. I am deciding how to have this cleared up and how far I will go to try to do so. Besmirching someone online is actionable. Damage is done.
I take my reputation seriously and present factual information. Civil disagreements are good to straighten fact from fiction. Repeadedly harassing and haranguing, especially over a fact that is widely available for consumers of cancer information is a very bad idea.
Jun 1, 2012 06:18 PM Heyho wrote:
Well, all I know is that last year, LCIS and ILC was found in both breasts, left side first and the right a month later. I was told by my oncologist that LCIS happens first and eventually turns into ILC, and that it is frequently multi focal. And that if I had lumpectomies, there would be a risk of more kicking off in remaining breast tissue. As it was, each side tipped up larger tumours in post-op pathology that originally shown on mammogram, lobular really is a sneaky one. My view is that whether ILC or LCIS, they were both diseased, both thus a risk to me and both are gone, along with a terrifying number of affected axilla nodes. I also had chemo and rads and now an AI, and I am the happier for knowing that I have done as much as I can to keep my future safe.
Jun 4, 2012 03:29 PM msippiqueen wrote:
I very much appreciate postings from ladies with ILC. I specifically invited them to post here as their journey began with an LCIS that became invasive.
I'm interested in what they were told when they had LCIS or what they were told if initially diagnosed later with ILC.
Reading their journey brings it home that, although relatively rare, real women with hopes and fears are seriously impacted (understatement) when LCIS progresses to ILC.
Thanks HeyHo, for sharing.
Are women making decisions about LCIS without understanding LCIS precedes every case of ILC?
Other LCIS information addresses the odds of LCIS progressing to invasive cancer, that and more should be provided as well, but fundamental to understand LCIS is to know that all ILC began as LCIS.
Jun 6, 2012 06:23 AM Galsal wrote:
Can only share that the same side which had ILC also had ALH in another area. This was in addition to ADH in several different areas and in the opposite side as well. As much as I don't like that my breasts were removed, I'm thrilled to have headed off the continual problems I would have had otherwise.
Jun 6, 2012 09:12 PM msippiqueen wrote:
ALH is described here:
I had more of that too, along with ADH, and other breast conditions. I found out when speaking with the pathologist the other day (when he confirmed LCIS precedes ILC), as is well documented, that my LCIS was estrogen negative (most are positive) and he is running more tests on my LCIS specimen. I'll get those results from the surgeon soon.
I hadn't worried about the specifics of my LCIS as the breasts were removed and I figured it was a mute point. I'm really interested in the results.
Jun 7, 2012 08:21 AM ArleneMarie wrote:
Thank you MissQueen for being vocal and informative. I didn't know but I suspected that LCIS is not as passive as people make it out to be which is why I went ahead with a preventative Bilateral mastectomy in 2010 and have never regretted it.....ever.
Jun 7, 2012 06:55 PM, edited Jun 7, 2012 06:56 PM by Sommer43
I know zero about LCIS, apart from that it is lobular. My friend, here in the UK, was diagnosed with ILC, grade 3, straight away, so does this mean that LCIS was there prior? Does this also mean that every person who is diagnosed with LCIS, will develop ILC ?
Jun 7, 2012 07:12 PM awb wrote:
No, everyone with LCIS will NOT get ILC, in fact many won't ever progress to ILC. (that's the problem, they just don't know who will and who won't).
Jun 8, 2012 12:51 AM, edited Jun 8, 2012 12:54 AM by beacon800
Awb is right. In fact the within the group of women who develop invasive breast cancer after an LCIS diagnosis, 49% of them will be diagnosed with ductal breast cancer. Lobular cancer after original LCIS diagnosis happens only 23% of the time. So if diagnosed with LCIS one should statistically be more worried about ductal than lobular cancer.
Most women diagnosed with LCIS will not develop invasive cancer. Something like 70% of women with LCIS will never develop invasive cancer and that is over a 25 year time frame.
Had a long chat with my oncologist on this topic. The entity we understand as LCIS is not a true precursor lesion. In fact, women diagnosed with LCIS in one breast have an equal risk of cancer to either breast over time. He explained that while most cancers, breast or otherwise, run a through a biology of in situ/local/regional/metastatic, the cells we call LCIS are not part of this continuum. True invasive lobular cancer likely starts as In situ, but is a different entity than the cell group we identify here on this forum as LCIS or "lobular neoplasm" or "atypical lobular hyperplasia".
The incidence of lobular invasive carcinoma is less frequent than ductal carcinoma in people diagnosed with LCIS, but is still more than that of the general population. The thinking is that there are certain people who get LCIS who also have a germ line or somatic genetic defect that peferentially disposes subsequent invasive disease to lobular cells. This is under study at this time.
So no, your friend did not necessarily have LCIS prior to her diagnosis and no, not all LCIS will become lobular invasive cancer.
Jun 8, 2012 07:45 AM mary625 wrote:
This is all very good information. As I said above, I was found to have both LCIS and ILC in my tumor. I don't know for sure if the LCIS advanced to the ILC, or if they both happened to be there at the same time. I don't know if my LCIS was somehow different than ALH or neoplasm. I will try to ask these questions at my next appointment in early July and share that info if I can get it. I'd like to better understand myself. What I do know is that if I had LCIS prior to ILC, I did NOT know it and thus was not given the decision that you ladies here in the LCIS forum may be pondering. I was low/no risk, passed every mammo and breast exam, and could not have been more shocked by this diagnosis. I evidently had dense, fibrocystic breasts, but no one told me or advised additional screening. My tumor was not a small thing measure in mm either. Therefore, I want you to have the benefit of what I did not know myself. I do not wish BMX along with chemo and rads on anyone.
Here is exactly what my path report said (and they took an extra week or so to run additional tests to prove this): The invasive carcinoma shows area characteristic for invasive lobular carinoma and area showing signet ring cell changes or much atypical pleomorphic appearance. Some tumor cell nests are quite rounded and may indicate in situ component, either in situ lobular or in situe ductal; however, they are cytologically quite pleomorphic. Therefore, further investigation by E-Cadherin as well as HER2/neu immunostains will be performed and an addendum issued. [SKIP TO ADDENDUM] E-Cadherin immunostain shows that the vast majority of the tumor cells are negative for E-Cadherin confirming the lobular nature of this invasive carcinoma. In addition, occasional rounded nests populated by rather pelomorphic cells are indeed in situ lobular carincoma since E-Cadherin is positive, which is surrounded by calponin positive myoepithelial layers. It should be noted that some lobular carcinomas in situ are quite pleomorphic.
Jun 8, 2012 11:04 AM beacon800 wrote:
Very interesting report! I too had pleomorphic LCIS, which really is a large reason I chose BMX. There is not a lot of research on pleomorphic LCIS, but it is considered more aggressive and more likely to be a true precursor lesion to invasive cancer than regular LCIS. In fact in my case even the residual areas removed on excision biopsy, though not sufficiently filling the lobule to be LCIS (making them ALH), also demonstrated pleomorphic character. Thus the pleopmorphism, in my case, was not so much a function of the size of the atypical area, but more a function of its origninal biological character.
Potentially those cells were "born" pleomorphic rather than a progression from regular LCIS.
That plus my family history plus other risk factors led to my decision for BMX. I have never regretted it!
If however, I would have had classic LCIS and no family history I would have done Tamoxifen and surveillance.
Jun 8, 2012 08:01 PM Jennifferm wrote:
I was diagnosed with LCIS in the left breast on March 23 2012. I had BMX on May 23. Got my full pathology today. Nodes were clear but I had LCIS on the right side as well. I will never look back and wonder if I made the right decision. Based on this thread and what I
Learned from interviewing almost a dozen BS and MO's, I don't think WE know enough to know if my diagnosis would have led to ILC, DCIS, IDC, or whatever. What I DO know is that by getting the BMX I've at least lowered the possibilities. It's been tough, but until a community of doctors can look me in the eye and consistently say "we know what this is, and what the potential outcome is" I will choose the most agressive, best possibility for a
healthy outcome, every time. IMHO.
Jun 9, 2012 07:34 AM leaf wrote:
Are we partly discussing about semantics/logistics? Perhaps there are some differences of opinion about what ‘is’ is and what ‘all’ means.
Sometimes 'is' indicates part of a group, but there are other things that belong to a different group. For example 'Humans have two legs.' Most humans have two legs, but some humans don't have two legs. There are also other animals that have two legs.
When I see the word ‘all’, I assume this means 100%. Not 99.999% or anything less. Maybe that’s not the way that others see it.
I am using an example to try to reduce the polarity of the discussion. Compare these two sentences:
a) Women originate from girls.
b) All women originate from girls.
Does sentence a) imply that all women originate from girls? Are the two sentences equivalent? Does sentence a) allow some women to NOT originate from girls? I know this depends on your definition of what a woman is, but how about the children that are raised one gender and at puberty have surgery to convert them to the opposite gender? What about human genetic mosaicism (which is where one group of cells have a different genetic phenotype than other cells that grow from a single fertilized egg.)?
Would you agree that sentence b) implies that 100% of women originate from girls?
In the NIH source msippiqueen cites:
they do NOT use the word ‘all’. They use the word ‘model’ as in ‘The currently favoured model of human breast cancer evolution includes a stepwise progression of very early, morphologically definable precursor lesions with cellular atypia to carcinoma in situ and invasive breast cancer ….Therefore, it is believed that a linear progression pathway exists from low-grade precursor lesions to low-grade invasive breast cancer .’
They do not say this implicitly, but I’m sure the authors of this paper read at least the abstracts of the papers they cite. In their paper they opine ‘Even more convincing is the fact that invasive lobular carcinoma indeed is clonally related to LN occurring years earlier .’ In the abstract for this reference that THEY cite  it states ‘Two cases of LCIS and ILC showed identical patterns of heteroplasmy. In one further case, additional mtDNA mutations were present in the ILC following LCIS. The remaining two cases of ILC and all 4 IDC were clonally unrelated to the previously diagnosed LCIS.‘ (emphasis mine)
I believe there IS a progression pathway that probably SOME LCIS does progress to ILC. I agree that this is a model. They do not use the word ‘all’. They cannot directly observe the LCIS and prove that it is the LCIS directly originated from ILC. We don’t presently have the tools to do that.
In the conventional interpretation of ‘all’, if someone can find ONE instance that ILC did NOT originate from LCIS, then it wouldn’t be all. In the paper they cited, there were TWO instances where the ILC was NOT clonally related to LCIS.
Perhaps you believe that 'all' means something less than 100%.
I'm still moving. I will probably be ignoring this thread, since I think some people are entrenched in their views.
Jun 9, 2012 12:41 PM, edited Jun 9, 2012 12:42 PM by beacon800
Leaf you are so nice to post here and walk thru the logic - I didn't have the patience!
One thing about cancer seems sure - absolute statements are almost always wrong. That has been the history of breast cancer, as far as I have studied it. There are many shades of gray and even cancer itself evolves over time.
What is important, I think, is that women with LCIS know the risks they they facing (in so far as the risks are currently understood). Almost certainly there will be more variants of LCIS discovered in the future, the way pleomorphic LCIS is understood to be a bit different then LCIS.
Some women's LCIS may be understood to be more dangerous once we have more research in place. I am really interested in the study(about 18mos ago) that shows that women who have fathers with certain cancers are more likely to get lobular breast cancer than ductal. Maybe for those ladies an LCIS dx is even more concerning, as they may have higher risk of invasive lobular. Science does not have the answer there at all but it lends itself to the notion of genetic defect predisposing a person to lobular vs ductal.
Jun 9, 2012 12:51 PM gardengumby wrote:
OK. I am confused... I had both ductal and lobular involvement along with necrotic evidence. The doctors didn't seem to be any more concerned about the lobular involvement - does that mean that it spread from the ducts into the lobes, or what?
Jun 9, 2012 01:02 PM beacon800 wrote:
Jenniffirm, I agree with you. I talked to many oncologists about it too. I was lucky to have that access and I used it!
Bottom line, they could not model my potential risk. They don't have the science to do so right now.
Some doctors thought BMX was too extreme, others wholeheartedly supported that choice, others simply told me "it's a personal decision". For me, it was the greatest choice as it has improved my quality of life and I am lucky to have had no pain at all (not even needing a Tylenol post surgery) and a complete return to my active lifestyle. I am really grateful.
One rather famous oncologist/epidemiologist told me, "the choice you are making is not what most women would do.". My thought was, well yes, that's true. But I don't need to go with the crowd on this choice. Everything about my case is completely unique to me.
Its a pity we don't have good predictive science for LCIS, but we just don't right now.
Jun 9, 2012 01:22 PM rava wrote:
The mother of my best friend had high grade ILC in her left breast aprox 13 years ago.. She had a lumpectomy , chemo and rads. Ten years later she had ILC in her rigth breast. She had a new lumpectomy, no chemo, but had rads. Then this year they found a new lump in her left breast. She then had ILC and LCIS... She has now had a masectomy and remowed both breasths....
Jun 10, 2012 12:59 PM beacon800 wrote:
Shabby, I feel your pain! It is a concern and I had that worry too.
But the whole reason I responded on this thread (I don't like the thread and disagree with its primary intent) is to try and put some perspective out there so women dx with LCIS do not have unnecessary anxiety. Yes LCIS can indicate future trouble and yes it needs to be dealt with.
But trying to write a PhD on the biology of incipient ILC is way beyond the capabilities of anyone here and can frighten people.
So what is important is that women understand as best possible their risks so they can manage them.
The odds are with you that you'll not find ILC. You had been screened very closely. Hold those things near! Once you have surgery this will be behind you. Hoping for the very best outcome for you!!! (((hugs)))
Jun 10, 2012 01:17 PM awb wrote:
shabby----I'm with Beacon. In the past, I've often read that women with LCIS have more serious findings upon surgery in 15% to 30% of cases; but recently I've read articles that say it is in the lower range of 15%. So it is much more likely (85%) that they will find nothing more! Praying you get good results Shabby.
Jun 10, 2012 01:25 PM, edited Jun 10, 2012 01:40 PM by beacon800
Those are good figures awb, and show the odds in favor of Shabby being just fine.
In Shabby's particular case I believe she has already had excisional biopsy at the site. Is that right Shabby? I think the numbers awb is citing are those for women facing an exisional after a core biopsy. If that is the case, Shabby, your odds are even better for finding no cancer since they have already removed more tissue and checked it. Does that seem right to you awb?
For what it's worth Shabby, I had same like you: core, leading to exisional (no cancer found) followed by BMX (no cancer found).
Everything is up in the air until the final path comes back, but hopefully it will all work out for you.
Jun 10, 2012 05:01 PM shabby6485 wrote:
Thanks for the replies! Yes, Beacon, I had an excisional biopsy at that site. In fact, they couldn't find the clip and took so much tissue, my dr said it was like a partial mastectomy! I am just a nervous person. However, I feel like this...if something worse turns up I am ahead of the game. It's better to know, than to not know. Sometimes, I read too much which causes anxiety. Truth is noone knows for sure about any of this stuff. I trust in God and I feel that I am doing the right thing.... Thanks again, AWB & BEACON!!!
Jun 12, 2012 03:05 AM msippiqueen wrote:
Yes, leaf, you can find Invasive Lobular Cancer clonally (genetically) unrelated to a nearby LCIS as leaf cites in her 6:38 post yesterday and derived from my link.
Yes, ILC can be genetically linked to an LCIS that was found years before.
The two cases of ILC in leaf's example are not clonally related to nearby LCIS. Yes again, leaf that happens. As every link cited proves, ILC is always preceded by its in situ status first. You cannot have ILC without LCIS.
Finally leaf, for crying out loud, it's not about somehow one must observe every transition of ILC from LCIS to understand that ILC is noninvasive first. LCIS and ILC are of lobular tissue, whether it is discovered before it invades (in the event it does) or after progression to invasion.
gardengummy, I have a link that may generally address some of your questions and I'll post them tomorrow or the next day, after I find it. Your Dr will be happy to address your questions as they arise, and how they relate to your very own pathology and treatment plan.
Jun 12, 2012 03:48 AM msippiqueen wrote:
Jun 12, 2012 08:45 AM msippiqueen wrote:
Good morning garden gumby, the following bco link addresses mixed lobular and ductal cancer. If more links would be useful, I'll be happy to provide some.