Just diagnosed with LCIS
Comments
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I would like to learn how Everyone who has invasive Lobular cancer started out with LCIS.
I have trouble finding Pubmed papers that support this position. While this paper does hypothesize that some LCIS does progress to ILC http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783988/figure/F6
in the same paper they opine These data support the current notion that CLCIS alone is more of a risk factor than immediate precursor for invasive carcinoma as these lesions harbor fewer genetic changes and thus will require longer time for progression to invasion.
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There seems to be 4 potential outcomes for women with LCIS (and nothing worse):
1) Some women with LCIS and nothing worse never get anything worse throughout their lifetime.
2) Some women with LCIS and nothing worse do get something worse later on in their lifetime.
Of this group of women:
a) Some women get clonally related ILC (as you proposed in your sentence and is in the
figure 6 of the paper cited above.)
b) Some women get clonally UNRELATED ILC. In this paper there were 2 women with
synchronous LCIS and ILC, and their LCIS was clonally unrelated to their ILC.
http://www.ncbi.nlm.nih.gov/pubmed/17380381
c) Some women get clonally UNRELATED DCIS or IDC. All 4 IDC were clonally unrelated to the previously diagnosed LCIS http://www.ncbi.nlm.nih.gov/pubmed/17380381
I don't know if DCIS or IDC can be clonally related to the previous LCIS.
d) Some women will get more than one incidence of DCIS or invasive, or several different types simultaneously.
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Leaf, I'll clarify again as on a previous thread a while back.
You point out what I have stated in many, many post;
LCIS can be meaningless.
LCIS can become Invasive Lobular cancer.
LCIS marks an increased chance of other breast cancers in either breast.
Whether Invasive Lobular Cancer is or is not clonally or genetically related to a diagnosed Lobular Cancer in no way changes the fact that LCIS necessarily and always precedes ILC. -
Do not ever assume Leaf, you know what I infer or mean, as you did on your point 2a.
I reread my entire post preceeding yours. It is solid, factual and you are way our of bounds. -
I have never heard of this idea that ALL lobular invasive started out as LCIS. For all we know some lobular starts with atypical lobular hyperplasia that does not look like LCIS.
This sounds like an attempt to associate the event sequence, well studied, of DCIS to Invasive Ductal cancer, for which much data exists.
However, LCIS is not seen as a site specific precurser lesion, in general, for Invasive lobular. If it were, it would be treated just like DCIS via lumpectomy and radiation. We know that having LCIS indicates higher risk for both ductal and lobular cancer ANYWHERE in either breast.
Which data indicates the requirement of LCIS prior to the establishment of invasive lobular?
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Excellent thoughtful points! You got my point exactly. I am certainly tying LCIS to ILC. Not every LCIS does this of course. But all ILC was LCIS first. ALH is before LCIS.
Strictly speaking, the point is ILC is non invasive first, LCIS.
The definition makes it so. The lobular cancer was enclosed before it was not enclosed. It was in situ before invasive. The very definition explains this.
The cellular features are not what I am addressing; how atypical or not typical, genetically related to other LCIS, ILC or not, or any other distinction of what makes up a specific lobular cancer, invasive or no.
I am not talking about mixed tumors, (ductal and lobular). It's a matter of is the lobular cancer contained or not. Lobular abnormalities and cancer are of lobular tissue. It's a spectrum of normal to abnormal in the breast lobule.
It will be interesting to see what research reveals as breast conservation women are monitored (studied) over this generation. LCIS is woefully understudied and there is nothing black and white about the behavior of LCIS.
Specifically because LCIS may not be site specific is all the more reason to have a PBLM, in my view. It's all the more dangerous. You just don't know what you're getting with LCIS. It may become invasive, it may not. It may signal different breast cancer in the other breast, now or later.
Lobular InSitu is first noninvasive, it must be so to be called Lobular InSitu.
Invasive Lobular Cancer was noninvasive in the lobules before it became invasive out of the lobule. Everything else is up in the air.Support a woman's right to chose...mastectomy.
Dx 4/28/2010, LCIS, <1cm, Stage 0 -
I have never heard of this, but maybe you have some data?
I spend a lot of time at Stanford University Hospital and was seated at dinner two Fridays ago with one of the top breast oncologists. Next time I have an event I will ask if LCIS is considered comparable to DCIS in the manner you describe.
Fortunately for those with LCIS, I believe this is not the case. Again, do you have data or an academic paper expressing the idea that LCIS, as a precurser lesion, turns into ILC in all cases of ILC? If such were the case, the treatment modality for LCIS would need to change, asap.
I think it is very important to be sure of the facts as this information is very unnerving for those with a recent diagnosis.
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Follow up comment: I post this from the Stanford Cancer Center website, please pay close attention to the first sentence in the second paragraph:
Lobular Carcinoma in situ (LCIS)
Although the name includes the term carcinoma, lobular carcinoma in situ (LCIS) is not really cancer, but rather a noninvasive condition that increases the risk of developing cancer in the future. LCIS, also known as lobular neoplasia or stage 0 breast cancer, occurs when abnormal cells accumulate in the breast lobules. Each breast has hundreds of milk producing lobules, which are connected to the milk ducts. In LCIS, the abnormal cells are often found throughout the breast lobules and both breasts are affected about 30 percent of the time.
Although most doctors don't think that LCIS itself becomes breast cancer, about 25 percent of patients who have LCIS will develop breast cancer at some point in their lifetime. This increased risk applies to both breasts, regardless of which breast is affected with LCIS, and can manifest as invasive cancer in either the lobules or ducts.
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I paid close attention to the whole statement from Stanford, paying special attention where you directed Beacon.
I get Stanford's view in this quote that LCIS is not cancer. That is the case, until it is. Once an LCIS becomes invasive, and it does and can, the parsing of words becomes an exercise in fulitity.
When it is a marker for breast cancer, it's an incredible heads up opportunity to lessen the chances of invasive disease and you can chose monitoring and meds or if you're lucky, a PBLM.
When it means nothing, the monitoring and surgery will have been an overreach. This happens in the majority of cases, it seems.
When it is an outright Lobular Cancer InSitu, or pre invasive ILC, having not yet breached it's bounds, the chance to remove it is nothing less than a miracle.
So the current trend to not call a rose a rose, all to diminish the harsh reality of LCIS, is a tragedy. The record is not set straight doing this minimizing.
Another nurse and I can not get over the term 'lesion' for cancer. Or the careless way a life changing diagnosis like LCIS is smoothed over as if the potential for invasive cancer couldn't really happen. The it's 'nothing worse' attitude.
We just shake our heads sadly because a calling a cancer something less threatening does not change what it is and does, when it is in fact, cancer, insitu or invasive. As LCIS sometimes is, and becomes. -
We may have a misunderstanding. I mean to say all ILC was LCIS first, not ALL LCIS becomes invasive. What a difference. Does this help?
I woke up from falling asleep as I think this may clarify my thinking and make more sense. -
No, what you said is that all ILC originates first as LCIS. That I believe is exactly what you said and stand by. It appears you are justifying this not by data but by the way "in situ" and "invasive" are used in English language, which is not truly applicable to LCIS.
LCIS, when discovered in 1919 was thought to be malignant. Most practitioners now consider LCIS to be a mis-named entity. Indeed, LCIS and atypical lobular hyperplasia differ only in the percentage of the lobular unit that they occupy.
None of this is important, except that telling everyone that all ILC starts as LCIS will have the tendency to frighten people diagnosed with LCIS. They will be scared that they have a higher risk to develop ILC. In fact there is no data to support this conclusion. The LCIS to ILC relationship is not established in the same way that DCIS to Invasive Ductal Carcinoma is.
Interestingly there is some discussion in the medical community that pleomorphic LCIS could be a true precursor to invasive lobular cancer. PLCIS is quite different than classic LCIS and even in respect to PLCIS there is much controversy regarding how dangerous it is and how to manage it. -
First, I appreciate the dialogue, your previous post cools down the topic so differences of opinion can be thought through with the goal of better understanding LCIS.
My point and understanding all along is ILC must first be noninvasive, or LCIS. ILC first originates as LCIS. LCIS does not necessarily become invasive, or ILC. Most don't.
I do use the medical definition to explain what noninvasive or invasive is. If this medical terminology is not applicable to LCIS as it relates to the LCIS that does become ILC, this is gigantic news and and sticky worthy. A game changer.
Women should be frightened of LCIS, but tempered by the knowledge that most women do not develop any breast cancers, even as LCIS is a risk factor and increases the once lower odds. A woman is still likely to be okay. -
I apologize for my assumption in my last post in 2a. You did not mention anything 'clonally related'. I did. I made the assumption that for LCIS to progress to ILC, there would be some common genetic errors. I should not have made this assumption and I apologize.
However, I still do not understand a concept that ILC must first be noninvasive. I don't understand why every case of ILC must start out being noninvasive. I don't understand why, hypothetically, some cases of ILC might originate, say, on the outside of the basement membrane, not the inside of the basement membrane. We do know that in some cases, it is probable that LCIS becomes invasive. I don't understand why some other cases of ILC couldn't appear by some unknown mechanism full blown as ILC, say, after a heavy dose of carcinogens. I don't understand why ILC would be REQUIRED to go through a non-invasive stage.
When I've read abstracts, they seem to agree with what Beacon800 has said.
But probably I'm simply misunderstanding everyone.
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I don't think you are misunderstanding anything Leaf.
In short words, I have not seen any data to support the idea that ALL invasive lobular must first begin it's biological life as what we call "LCIS". People sometimes insist that their personal ideas be taken for fact and to argue with a personal philosophy that has no data behind it is not useful.
What is important is that patients reading this forum understand that if they have LCIS, this is not to be seen as an infantile version of ILC just waiting to slip from the lobule and become systemic. This is NOT the case.
If it were the case we know that LCIS would be treated just like DCIS and surgery would be required to excise it to clear margins. This is NOT the case and not the standard of care.
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Ok. Everyone back in their corners. Msippiqueen- I can understand how looking at BC from a linear perspective makes sense. Like a rash, it starts little and then just spreads, right? Apparently, BC really doesn't act like that. I think BC experts have looked at it like that but now are discovering it is much more complex. There is research being done trying to better understand the pathways which cause cancer to progress. Since my dx I have gone through articles on Medscape and other medical resources and even though I am in the medical field (nurse) my head hurts trying to understand this. Anyway, some reserach is suggesting that the hystologic subtypes like ductal and lobular cancer may not be as important as the clonal or molecular characteristics of cells which have to do with tumor grade. My understanding is that someone with LCIS may develop ductal cancer and someone may not have LCIS but develop ILC. Not so much like a rash but like someone with a cold who ends up getting pneumonia or the flu. The cold puts you at risk, but you may end up not getting pneumonia or you might get the flu. Or you might just get pneumonia and never have a cold. I don't know if this is a good analogy, since I don't think someone actually gets over LCIS, but I hope that perspective is helpful to some. Goodness, I hope that doesn't confuse people more!
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Thanks, leaf. I appreciate your response. It means a lot. Also, I apologize for assuming you are minimizing LCIS when using the term 'nothing worse'.
Beacon, (I'll dash back in my corner in just a sec, dobie ;-) if you are suggesting I am pulling things out of thin air, and using personal thoughts, not facts, this is incorrect.
I have explained what I have been told as recently as two years ago, and taught many years ago, and read currently, that invasive breast cancer is non invasive first.
If I can read research that states ILC may invade tissue without first originating from a contained lobular tissue, I'll happily stand corrected and pass on that information. Cancer can do lots of things that baffle. I have an open mind.
Leaf, you probably have your hands on an abstract regarding this and I would love a link. If you haven't posted it already, please consider doing it (again) for our benefit.
Today, I read a blurb on the Amazon website of Dr Link's book on bc. Pull up his book and search LICS/ILC to read a few sentences. Page 45.
He calls LCIS a neoplasia that does not always progress to ILC (in contrast to DICS-IDC). At the same time he says some LCIS can be premalignant (noninvasive, my term) and progress to malignancy (invasive, my term). The question remains, does all ILC first appear contained as LCIS, or doesn't it? And why is an LCIS premalignant tissue not also described as an InSitu Cancer?
What we can all be assured of is this, what is understood and is correct today about LCIS or ILC will be looked at with more clarity tomorrow.
Correction Edit: Not all DCIS becomes IDC. Some DICS does not become invasive cancer.
Bessie, the resident expert on DCIS, on that forum, can talk DCIS inside out. -
Interesting posts ladies. I had DCIS, LCIS in one breast and atypia in my good breast. As an observer of your posts, I think the differences of opinion are honest and educated. Not sure there is a " right" answer here. If there was...treatment and prevention of this epidemic would be much more advanced than it is. Thanks for all the info to ALL of u!
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Anyone who's found themselves with an appt. with a breast surgeon and any diagnosis with a "c" in it can appreciate the passion exhibited on this thread. Thanks all, for your research and information. . .confusing as this LCIS thing is. Thanks for the calm and clarity, Dobie, particularly given your recent surgery.
Prior to my being sent for my first biopsy last winter, I knew basically zilch about any of this. BC was BC to me. . . I knew just a tiny bit about staging, felt terrible for any friends with any BC diagnosis (never knew one from another) and was broken-hearted at the loss of a friend.
Then, from the first mention of "cluster of microcalcifications", "atypia", "ALH", "ADH", then "LCIS", I've been on this info journey as all of you have. While I've stuffed my brain with so many of the resources on the web, in print and via medical community friends, I'm really not sure anything is truly CLEAR about LCIS yet.
The truth is. . . I think "non-invasive" "cancer" is an oxymoron. My basic understanding of "cancer" is that it means "out of control cells", which means. . . the "c" part of LCIS either can't really be a cancer or it can't really be contained. Hence, the confusion. I know there's a trend in the breast health community to clarify LCIS as "neoplasia", rather than carcinoma. . . but look up "neoplasia" in the dictionary, and see if that helps your confusion - - didn't mine. So, LCIS is a lobule or lobules full of atypical cells, but they really mimic creepy-looking cancerous cells, they just haven't broken through the wall of the lobule and may never do so.
So does LCIS become ILC or IDC? Or does it just mean that it could happen in the future somewhere else? Is there a progression to cancer or a correlation of a cancer? That is the question, for which there doesn't seem to be an answer yet. I don't think the medical community really knows yet, either - -
Makes my head spin -
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msippiqueen wrote:
If I can read research that states ILC may invade tissue without first originating from a contained lobular tissue, I'll happily stand corrected and pass on that information. Cancer can do lots of things that baffle. I have an open mind.
I don't think I would be able to find one, because from what I've read, they don't understand the complex way that any cancer develops, let alone ILC. If a scientist proposes theory X, they publish it. If its controversial, they you might have another scientist try to knock down theory X and propose other possible alternatives. Normally, scientists don't first propose anti-X theory, let alone prove or find strong evidence against theory X.
I haven't found anyone in the Pubmed abstracts that proposes your theory. For example, they know that smoking tobacco and cancer are strongly correlated, and non-lethal exposure to high radiation levels and cancer are correlated, but not EVERYONE who smokes tobacco or is exposed to non-lethal high radiation gets cancer. Even of those that do develop cancer, some of them might develop cancer in the lungs, and others in the blood or other areas. From what I understand, we don't know why. When someone gets cancer and is alive, they still have many 'normal' cells (in addition to the cancer cells.) When someone is exposed to cancer-causing agents, why are some cells more susceptible and others less susceptible? Maybe there are other genetic or nongenetic factors that contribute.
From what I've read, we don't understand the natural history of ILC, LCIS, or breast cancer in general.I'm in the process of packing and moving, so I won't be able to contribute to this discussion in the near future. I have deadlines I must meet.
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Excellent ladies!
Amen and Amen! It always boils down to: Much Is Not Known.
Basic Science backs my understanding that ILC is noninvasive first.
It does happen this way. Whether ILC can spontaneously occur without first being noninvasive is the question that has brought such fire.
Your points in paragraph three leaf, do not appear to relate to the basic science theory question at hand. If I'm missing something, please help me get it! Someone else can do this for you, until you get back. I get your general points, just not how they relate to the question at hand.
While you do not have a link explaining how ILC occurs without first being LCIS, it's out there somewhere, surely. Smart women on this thread believe it. Women I respect. I'd like to broaden my understanding as well. -
Leaf- Best wishes on your packing and moving. Hope you have help. Take good care and I will look forward to hearing from you when you get back to us.
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Okay, downloaded the latest Dr Susna Loves BC book and looked at her website which hase some of the same information.
Here are links that explain how LCIS becomes invasive by breaking through the lobules.
http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=2175
http://www.dslrf.org/breastcancer/content.asp?CATID=70&L2=3&L3=7&L4=0&PID=&sid=132&cid=1629
I looked all over this book and on bco to find if invasive lobular cancer can occur seperately away and out of the lobule and not be LCIS first. I simply didn't find it.
I wondered if perhaps normal lobular tissue could break off and attach elsewhere (like ovarian tissue in the peritenal cavity) and form an invasive lobular cancer. Maybe ILC would then occur elsewhere in the stroma or under skin or breast wall (still noninvasive prior). This is not theory, just wondering. I just didn't find that anywhere.
Hot off the press abstracts of research may show how an ILC can occur without originating from LCIS. I haven't seen it, that's not to say it doesn't exist. Please, if anyone has a link or any information showing this, please post it.
Also: Dr. Love's latest book has lots of good illustrations throughout her book showing ILC originating from LCIS. The kindle version has links backing her theories of any topic. It is helpful to see the context in which her research is applied, paints a more complete picture.
I would encourage anyone to get the kindle version, it's inexpensive and has those interactive features. -
Good links, Msippiqueen. Thanks.
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Look at all of this hearty discussion on LCIS! Love it!! I should be on the boards more often. Has anyone read The End of Illness? It's written by an oncologist and though I don't agree with some of his propositions, it's a facsinating read. He describes our bodies as either 'cancering' or not. Somehow reading this book, which is a bit technical for a non medically trained person like myself, helped me emotionally after my PLCIS diagnosis and subsequent PBMX. I had started feeling like I couldn't trust my own body, that whatever I did made no difference anyway. I can't actually articulate what exactly turned me around but I do feel much better now. I'm almost one year out since my exchange surgery and someone whom I haven't seen in a year gave me the sad face and asked how I was doing. It took me a second to realize why she had even asked! That frightened, fragile person couldn't have been me but of course it was. ANY discussion of LCIS is a much needed one and I thank you all for giving me lots to think about. All the best, Kelly
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You're welcome, dobie, I'll provide links when I can. Wish I could below.
What a beautiful post, KellyMaryland.
Chapter 4 (Love's book); Understanding Biology and Risk, explains that invasive cancer requires mutated cells to be present (such as LCIS) and the surrounding tissue (outside the lobule) needs to "invite" the mutated cells to move out of it's sedentary position. -
I read the Susan Love links and the related studies. The study cited from 1997 indicates that potentially some LCIS could foster tumorgenisis if certain things happen. This:
"In the six cases of LCIS without an adjacent invasive component, no expression of E-cadherin was found and LOH on 16q22.1 could be detected in four out of five informative cases. This and the finding of identical mutations and LOH for the same markers in the paired invasive and in situ components indicates that inactivation of E-cadherin can occur according to the two-hit Knudson model and that it may underlay the formation of the in situ component and precede progression to an invasive tumour."
What I got out of Susan Love's statements is that science is unsure of this progression, if any. There is some small amount of data that could be suggestive, but there is no certainty.
yet, you come with the blanket statement that ALL invasive lobular started from LCIS. Sorry, there is just not enuf out there to make such a statement. Good luck to you.
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I used a book as a resource that is Dr Susan Love's latest. That she quotes literature that is not to your liking, beacon, is something you can take up with her.
Your quote from chapter four is more easily understood by reading the entire chapter. Dr Love emphasized that newer literature can be found on her website and provided a link.
http://www.dslrf.org/
Your continual hostile tone beacon, is counterproductive to your viewpoint.
I am starting a new thread on this subject; LCIS Origins.
Please join in, y'all! -
So I went to MO today with my list of questions among which was: Does all ILC start as LCIS or is, in your opinion, LCIS and ILC two separate beasts. His opinion is that they are two separate beasts. There might be a moment where an early ILC might not have reached an invasive stage but it's ability to break through is what makes it invasive vs LCIS which stays in-situ. It is it's molecular characteristics which defines it and it's ability to become invasive or not. That is just one opinion. So like religion, I say, believe whatever makes you comfortable and makes sense. We are all just humble humans with limited perspective in this vast universe. It doesn't change the truth, whatever that may ultimately be. Peace.
And thank you KellyMaryland for the book recommendation, The End of Illness. Sounds fascinating. I am planning to pick it up. -
I appreciate your explanation dobie, your comments are important.
To your points, please clarify the LCIS/ILC beast notation. I seriously do not understand what that refers to.
I totally agree as well, the molecular (and other defining) characteristic of any given LCIS can be helpful in understanding which LCIS may or may not invade or progress.
Regardless of what distinguishes any LCIS or ILC, an invasive lobular cancer must first be noninvasive.
I have another helpful link and highlights from a phone consultation with a pathologist this morning posted on the new thread.
This is about being factual. Saying an ILC can develop without first being an LCIS is wrong. I would have dropped this long ago, I've read wrong info before, but I was accused of trying to post lies to scare people.
Being savagely maligned as I have by beacon, then having leaf, after some time, trying to discredit me again, is damaging to me, the readers, the LCIS forum, and the entire bco. At least leaf apologized, once again. Beacon hasn't stepped up.
I'm always up for question and debate, this allows an opportunity for clarification and understanding and change, where needed. But the personal attacks are outrageous even one time, to continue them time and again is insufferable, and causes great harm. -
Msippiqueen- thank you for your invitation to clarify. I was starting to wonder if you were one of those who always needed to have the last word and now I know you do not always.
To clarify, " Is LCIS and ILC two different beasts?" I mean to ask Is LCIS just baby ILC or a different entity entirely. The MO's opinion is that they are different. I take that to mean that although ILC may at some point be preinvasive, by it's molecular structure it is still ILC. During my discussion with MO, he commented that the term LCIS is confusing and misleading and many think it should not be called LCIS at all. So I think we should take it upon ourselves to rename it right now. I think LCIS should be named "Shirley" and ILC should be named "Laverne". So now when I say I had Shirley AND Laverne in my breast and someone says do you think Shirley turned into Laverne? I could say no, I think Shirley and Laverne are 2 separate enities they just like to hang together. Or maybe I will say , by golly, Shirley turned into Laverne, depending on the current cancer beliefs. ( sorry for the silliness. Must be the drugs. Remember I am still post- op.) -
Hey, a little comic relief is always a good idea!
No, I'm not about having the last word, thank you for understanding that. Now, it's about clearing my name and underscoring that I am presenting solid information found everywhere. No distortion, not misleading, just fact. Of course, changing the name of LCIS doesn't change what it can do.
ILC does not suddenly appear as an invasive cancer. It has to have been LCIS first.
It's vital for women with LCIS to have correct and complete information and it must be factual.
I will remain available on the LCIS forum to post this fact anytime necessary. I will continue to respectfully ask others who post ILC occurs without first being in situ, to provide links explaining their position. Throwing out misinformation creates urban myth and is damaging in many, many ways.
Denying a fact does not change it's truth and relevance. Bullying and browbeating, lashing out, introducing unrelated information to discredit someone, is serious misconduct. Running off after doing these things to me (yes, this was done last time, too) or having a dismissive attitude only adds to the disgrace.
Who wants to visit the LCIS forum and get caught up in mud throwing drama? Who comes back after witnessing dog piling and false accusations?
We're here to serve, share, and learn.
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