Pleomorphic LCIS

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  • nash
    nash Member Posts: 2,600
    edited August 2009

    Thanks for sharing your story, Naner. My PLCIS has been behaving itself, too. Glad you're doing so well, and welcome to the boards!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Linda----I would also be curious to know what  she means by "better tissue studies" and  will she be needing any participants for a study on LCIS?  Did she comment any on the risk level when LCIS is combined with a close family history of ILC?

    Anne

  • OG56
    OG56 Member Posts: 897
    edited August 2009

    Sorry ladies I meant the better tissue samples for me are excisional biopsies due to the fact that so far I have only had needle biopsies. She will be doing these to ensure I don't have any maligancy growing near the LCIS.

    She stated that in my case with that MRI we opened a Pandora's box and we shouldn't close it without making sure that all is clear, especially in the contralateral breast. According to statistics (which I only earned a C for in college) because I have already had IDC in my right breast the chances of a local reoccurance is about 1% but even with the Arimidex I still run between 5 and 10% chance in the left. Sometimes I could run down the street screaming and need a straight jacket because I find making these decisions very difficult. However, I have 2 out of 3 BS concurring that it would not prolong my life to have a BMX at this point in the game. She did state we could talk about it differently if there is cancer in the left...well I hope to hell there's not.

    I wish I had heard more concrete substance for all of us but it appears to be a numbers game right now.

    I will ask her in a couple of weeks who can participate in the LCIS study and...

    Anne I did have your ? about the probability of increased risk due to family hx but that was one of three ?'s she did not answer I will get that answer out of her yet (:

    I will say she spent over an hour with me and said she states the same thing every week to some woman in her office not to do a BMX just because of LCIS. I told her about all of us on BCO and maybe we could get her to join this board somehow, I will work on her. My perception of her is that she is passionate about her work, kind and patient.

    I will try to get her to actually write some information down so that I am able to present it to all of you more clearly.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Linda-----thanks for all the info. My oncologist  used that exact same expression "opening Pandora's box" when we first discussed my having MRIs--he was very concerned about the possibility of unecessary biopsies and subsequent anxiety, but I told him I would rather take that risk than risk something invasive being missed. (took me nearly 3 years to get him on board with the MRIs, but now I'm concerned that if health care reform comes about, my coverage for MRIs for LCIS might be questioned) (yours wouldn't since you've already had invasive bc). It's comforting to me to know  she is in agreement with all my docs about not needing the BPMs for LCIS. I look forward to whatever else you can find out!

    Anne

  • Krisc
    Krisc Member Posts: 33
    edited August 2009

    Ann, my oncologist and breast surgeon are not overly keen with me having yearly MRIs either.  Said the same thing as yours basically.  I just met with the oncologist and he said mammograms every 6 months.  I asked about alternating mammo and MRI.  He said he would meet with my breast surgeon and radiologist and discuss the best treatment.  I told him I really want yearly MRIs due to the risk of developing that sneaky invasive lobular cancer.  I agree with you, if we do get health reform, MRIs may not be available to LCIS patients at all.  It is all very scarey!

  • macksix6
    macksix6 Member Posts: 201
    edited August 2009

    Thanks Omaha Girl for the information. It is now clear as mud as the saying goes. The doctors just don't know what LCIS or PLCIS is or how it will affect us in the future or what the best course of treatment should be. It is most often the wait and see  approach to see if you develop invasive cancer and hope that you catch it early and then treat it.

    The consensus on LCIS is that it may increase your risk of developing an invasive cancer and so the standard for treatment is to monitor. 

    Unlike classic LCIS, PLCIS is much different the cells are very large and abnormal looking with calcifications and cell necrosis. Every doctor I have seen and everything that I have researched about it suggests that it should be treated like DCIS. The microbiology of PLCIS is very similar to that of DCIS and so in the past it was often dx as DCIS but now with the E- cahden testing that it can be isolated as lobular in nature.  The standard treatment for DCIS is to excise to clear edges. I have also been told( and there have been small studies) that indicate that PLCIS is related to PILC which is an aggressive type of cancer. 

    I am very surprised that Dr King would just lump PLCIS with classic form of LCIS and not treat it more aggressively since the microbiology of the two are so very different .

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    I'm still very confused, too. I feel uncomfortable when statements or recommendations regarding LCIS are made about PLCIS, because we just don't know how these are the same or different. Linda, I don't understand how the doc can say you run only a 5-10% chance in the contralateral breas (tho I hope this is true). Maybe this is true if you only had ILC? But my understanding is that LCIS puts the risk in the contralateral breast at about 30% - or maybe I'm totally wrong. Also, we have heard a lot that PLCIS should be treated like DCIS - which mine was - but they only seem to apply this recommendation to the breast in which the PLCIS occurs. My question still remains - how should the contralateral breast be treated? It would seem that the risk would be that of, at least, having had LCIS - since that's what it is, and maybe a more aggressive variant of it - not the risk you would have if you had DCIS or ILC in the original breast. I always question what we're being told when I hear these really low risk factors quoted for the other breast that seem to me based on DCIS risk rather than LCIS risk. Does anyone else get what I'm saying here?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Hey all, I am new to this thread, but like all of you I have been dealing with ILC and LCIS.  I have the pleomorphic varient as well.  I was diagnosed in May with ILC in the left breast and the surgeon had misgivings about the right side.  I opted for BMX, just freaked out and concerned that I wouldn't be able to go through it all again.  I ended up having PLCIS on the right side.  I met with my radiation onc. yesterday (I don't actually need rads it turns out),  I really liked the doc and she shed some light on my path report.  Her opinion was that it was really good that I had BMX because the cells in the LCIS did look fairly aggressive.  I don't know how she would have felt about it if I hadn't already had invasive cancer in the other breast though.  My next step is to wait for my oncotype DX, so we will see where that all goes.  I have learned so much from reading all of your postings.  You gals are so smart and brave.  I hope for the best for all of you.  It is all so confusing at times, but seeing what you all think helps so much.

  • OG56
    OG56 Member Posts: 897
    edited March 2010

    Well I guess I just added more mud to the murky waters of LCIS...

    I believe that my chance of getting an invasive cancer in the left is quoted lower because of the Arimidex, but I am seeing her again on the 31st and I am taking these additional ?'s and a tape recorder, so I can be an accurate reporter.  I am sorry I feel like I have made it even more confusing than it already is. 

    Did all of you that had a small invasive component have a Oncotype?  I did not and now they do them I guess all the time and it scares me that maybe I should have had chemo.........Wow, I suppose we will find out new stuff all the time, if anyone takes Arimidex there are quite a few new side effects listed on my handout. I think soon it will say memory loss, because I have definetly lost mine and I cannot find it anywhere (:

  • nash
    nash Member Posts: 2,600
    edited August 2009

    Linda, please don't feel like you muddied the waters at all. You did us all a huge service by talking to this doctor. It's invaluable.

     I had a 2.7cm invasive componenet--pleomorphic ILC surrounded by extensive PLCIS. My Oncotype was 18. Part of the reason I didn't have bilat mx b/c due to  the PLCIS, although that is what my surgeon and tumor board originally recommended, is that they thought I was at a higher risk of mets than of a new primary, and that's why they reversed their original surgical recommendation. 

    Really, the docs don't know any better than we do, when it comes right down to it, and we just have to do what is right for us as individuals.

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    Linda,

    Please, please don't feel like you confused things more. I agree that the more info we have, the better. I'm so grateful that you brought our questions to the doc. The problem is with the lack of knowlege they have about this rare entity. So we hear all these different things from all these different doctors and try to make some sense out of it all so we know what the heck we should do. I keep hoping for some kind of crystal clear explanation and recommendation that makes some logical sense, but it just is not out there, apparently. One of the things that threw me for a loop was when the doc at Mayo told me that tamoxifen hasn't been show to affect survival rates! My onc says it cuts the chance of recurrence in half, and I was counting on that. I believe that's true, but maybe if you have a type of cancer that is likely to metastasize, tamox doesn't affect it anyway? But if you have one that would just come back but not probably metastasize, it does cut the incidence in half? Now everyone can thank me for muddying water!

  • OG56
    OG56 Member Posts: 897
    edited August 2009

    If you go to the home page and read under how to evaluate your Risk it really explains things, I needed my husband to do the math...I asked my DH to read all of this thread, and when he was done he said " my god no wonder you are all confused" he did say that Dr. King doesn't call it classical LCIS but "standard". My DH wants me to ask her why 50% of the women are told to get a BMX and the other not. He wants her to convince me her way is the best. So, I guess I will.

    She did state that a BMX would only reduce my risk not increase my survival rate. I say hmmm to all of these Dr's and why can't they be on the same page. Minnesota if it is all ER+ why wouldn't the tamoxifin keep it quiet and possibly prevent a reoccurance or metastisis?  What the hell is everyone talking about LOL

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    Linda,

    I totally don't get what the Mayo doc said, either: that tamox doesn't increase survival! He didn't say it doesn't decrease recurrence, just that it doesn't increase survival. That's what I don't get - you would think that if it reduces recurrence (by interfering with estrogen uptake by the cancer), it would increase survival. That's why I'm hypothesizing that maybe the cancers most likely to metastasize (and decrease survival) are more aggressive, less likely to be "calmed" by tamoxifen. But other types that are calmed by tamoxifen are less likely to metastasize. That's the only way I can make sense of what seem to me to be contradictory statements. But it sounds like what your doc said about BMX - it would reduce risk but not increase survival - that sounds contradictory too. I don't get any of this! I'll look at the risk assessment on the home page...

  • nanannlan
    nanannlan Member Posts: 17
    edited August 2009

    i'm having a hard time with this website in following a thread.  anyway, thank you omahagirl for your work.  question:  are you pre or post menopausal?  i know that memorial sloan has a different policy regarding arimidex and tamoxifen.  i have not had any invasive cancer, just plcis and lcis.  i am post menopausal.  that is why i am on tamoxifen - and the statistics are there, otherwise i wouldn't be taking it.  as for your brain on arimidex - if you are pre-menopausal, it could just be a peri-menopausal symptom.  try taking a good brand of fish oil with both dha and epa.  i took nordic naturals for a while.  also, add flax to yoru diet and see if this helps.  we all haave to remember that we are individuals that it is more rare than not, that our circumstances and symptoms overlap.  my brother-in-law who owns a lab and does research in cancer was at a conference where pleomorphic cells were discussed - the feeling at that time and place was that pleomorphic cells can come and go in the body.

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    Nanannian,

    Sorry about the side-issues on this thread. I threw a totally different issue in here re: tamoxifen. I was pre-menopausal when started on tamoxifen - and also no invasive, just plcis. Interesting about what your brother-in-law says - that pleomorphic cells can just come and go. Maybe mine will just go! I sure hope so! Now I'll try to stick to the thread...

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    I just wanted to add a little bit of information that I learned today in an appointment with the nurse at our breast center who is kind of a nurse educator/advocate/etc. for women diagnosed with breast cancer. She called me in reference to my considering proph. mast. on the other side from where my PLCIS was found. I didn't know what to expect, especially with all these conflicting opinions floating around. I thought she might try to talk me out of it. But actually, right up front she told me that what I was considering was perfectly reasonable and that she could help me get things moving, if that's what I decided.

    One thing she told me, that I was not aware of, was that age at being diagnosed with LCIS is a factor in determining how likely it is to lead to invasive cancer. I had figured that the younger you are when diagnosed, your chances might go up just because you had more years ahead of you to get it. But she said that if you get it younger, it is considered possibly a more aggressive form, just by virtue of your age. I was just a few months past 50 when diagnosed, while most women are diagnosed at later ages, I guess. So my age alone is a risk factor.

    Also, I was thinking that I would have to create a case for my insurance company to cover the procedure, should I decide to go ahead with it, as if LCIS wasn't quite enough, and that I would have to prove the PLCIS is a riskier proposition. She said that, no, LCIS is considered justification enough and that they have never had trouble getting prophylactic surgery and recon for the other breast in the case of LCIS, even if you don't decide to do it until years later. I worried that my insurance would balk at covering all of these costs a second time, but apparently this isn't a factor.

    She also told me that one of the oncologists at our clinic had wanted to do research on DCIS, having all women diagnosed with it be tested for Her2neu. Right now, you aren't routinely tested for this unless you have invasive cancer. It is his theory that some cases of DCIS are more aggressive and that the Her2neu factor could be why and that women should be tested for this, even without invasion. I had one level of the test, because they thought at first that I had invasion, but I never had the more accurate test because, in the interim, I was found to only have in situ cancer and not invasive. Unfortunately, he was unsuccessful in obtaining funding for the research - but the theory is out there that there are more aggressive variants of in situ cancers - PLCIS possibly being one of them, and that perhaps some of us should be on Herceptin, in addition to tamoxifen or arimidex or evista.But you have to be tested and found to be positive for Her2neu in order to have that treatment.

    Also, I asked her about the Mayo doc saying tamoxifen doesn't impact survival. She totally dismissed this and said that there have been a number of cases over the years of the Mayo docs not necessarily knowing everything. My onc here has even, on occasion, called up one of the Mayo docs, with the patient sitting there who had heard the erroneous info, and ended up having the Mayo doc retract his comment. So I am just going to dismiss that remark about tamoxifen not influencing survival as crazy and inaccurate.

    So, I thought I'd pass on all this stuff to you, in case any of it is of any use to you gals. Let's just keep on pooling our information!

  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    Well, I think there is some controversy about some of her facts.

    According to this 2006 article, with data taken from the SEER study, the mean age to be diagnosed with LCIS is 54.3.  (pg 2106) (Follow the links on the right to get a free copy of the .PDF or HTML text.)  http://www.ncbi.nlm.nih.gov/pubmed/16604564 

    Per Up To Date,  a professional subscription service, the mean age is 46-48. So we have more controversy.

    When I went to my 2nd opinion at a Major Institution (which was an NCI certified cancer center), when I asked the nurse practitioner about my risk of bc with LCIS, she started out with "Here we use the Gail model" and I finished her sentence with "which specifically excludes LCIS."

    Up to date also says that they can't find features of LCIS women have that predict future invasive breast cancer.  They said in one report, family history played a role (citation 7), but when these results were re-analyzed, family history only played a role of the woman was initially diagnosed with LCIS before the age of 40. (citation 40).  Other authors have found no association between family history and subsequent invasve breas cancer risk in LCIS patients. (citation 40).(Citation 6 is http://www.ncbi.nlm.nih.gov/pubmed/1748429) (Citation 40 is http://www.ncbi.nlm.nih.gov/pubmed/8197776) (Citation 7 is Haagensen, CD, Bodian, C, Haagensen, DE. Lobular neoplasia (lobular carcinoma in situ) breast carcinoma: risk and detection. WB Saunders, Philadelphia 1981. p.238. )

     This Up to date service also opines that the following suggests a surveillance strategy may be a feasible way to go.


    "In a 12-year follow-up report of the NSABP trial described above of 180 patients with LCIS who were managed with local excision and surveillance only, 26 ipsilateral (14.1 percent) and 14 contralateral (7.8 percent) cancers were diagnosed, of which nine ipsilateral and 10 contralateral cancers were invasive [25]. Only two patients succumbed to breast cancer, one of whom had a prior invasive ipsilateral breast cancer.


    The three largest prospective randomized trials of breast cancer chemoprevention in women considered at high risk for the disease (all of which enrolled women with LCIS) and a meta-analysis of all four trials all fail to show a survival benefit from tamoxifen compared to surveillance alone, despite an approximately 40 percent reduction in the risk of invasive breast cancer in treated individuals.

    Surveillance must last for the patient's lifetime, because the increased risk of breast cancer persists indefinitely. We typically examine women with LCIS at four to six month intervals and obtain annual diagnostic mammograms. Guidelines from the NCCN suggest an interval history and physical examination every six to 12 months and annual screening mammography [59]."

    Yup, they are citing info from almost 30 years ago (this section of Up to date was updated Oct 2008, and last literature search 5-2009.) But again, some of these citations are looking at groups of around 50 LCIS patients.

    If there is this amount of controversy about LCIS, you can imagine the controversy about PLCIS.

    I'm not trying to judge who is right, just that it sounds like different people have different ideas.

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    Leaf,

    Wow, your knowledge about this is amazing! So you're saying that the thing about tamoxifen may be accurate - I still don't get the logic of it at all, tho. So maybe the gal meant the age at getting breast cancer. Period. Not specifically LCIS. And maybe that's what she said and I misquoted. Wouldn't be surprised. Do you know the average age of getting any kind of breast cancer? And whether this influences outcome?

  • nash
    nash Member Posts: 2,600
    edited August 2009

    Random though I wanted to throw out there--I've found, given the lack of concrete evidence one way or the other on pleomorphic LCIS, that some of the docs give an opinion on bilat mast that reflects what they would do for themselves, not necessarily what is medically necessary.

    Case in point--my tumor board originally recommended bilat mast for my PILC/PLCIS b/c my surgeon was trained at MDA, and that's their protocol. Tumor board eventually reversed that recommendation. But the oncologist I had at the time said, "I'd do bilat mast if it was me b/c I am terrified of getting bc". Well, I really didn't care what her angst about the disease on a personal level was--I wanted to know what was medically necessary. Turned out no one could really tell me what was medically necessary, and I had to make a decision that was right for me (went with lumpectomy for the PILC and left the PLCIS in there). 

    I'm not saying one shouldn't do a bilat mast if that is what one wants. I'm just saying that no one really knows what's best. And there's the rub in all this! Yell

  • leaf
    leaf Member Posts: 8,188
    edited April 2011

    I completely agree with Nash.  Especially with PLCIS, it is full of controversy.

    I was pretty amazed that studies can't even agree the mean age that one gets LCIS (at least classic LCIS).  There have been studies that have suggested more women are getting LCIS diagnoses, probably because more biopsies are being done.

    I think its pretty well documented that the mean age to get breast cancer (probably mostly invasive?) is in one's early 60s.

    "From 2002-2006, the median age at diagnosis for cancer of the breast was 61 years of age" http://seer.cancer.gov/statfacts/html/breast.html

    Its hard to find statistics on the people who have LCIS (at least classic LCIS),  subsequently get breast cancer, and then end up dying of breast cancer.  Of course, there is the question whether some of these women may have had their invasive cancer at the time of their LCIS diagnosis, especially since ILC can be hard to detect. I think the statement by the Mayo about tamoxifen protecting against breast cancer DEATH in patients with (at least classic) LCIS and nothing worse may  be correct because this pool is so very small, and they do not have a big enough pool of these people to do studies.

    This book cites an article that lists 3 more deaths. http://books.google.com/books?id=fO-Q5POnjhMC&pg=PA277&lpg=PA277&d (p. 277)  But I hope you get the idea: I don't think the number is a large one, particularly if you  need to split this group between some that took tamoxifen and some that didn't.

    I personally think the choice of treatment for LCIS or PLCIS is very personal, and am NOT trying to advocate one option over another.

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    Nash and Leaf,

    I totally agree with both of you ladies, but want to add that, of course, no one "wants" a bilateral mastectomy and I am trying my best not to be motivated only by baseless fear. The problem with all of these studies is that they are about LCIS. PLCIS is not necessarily actually even a subcategory of LCIS, but may turn out to be a different animal entirely, so extrapolating from those studies is not necessarily logical. I guess I'm trying to get a sense of the nature of PLCIS itself. We know that the cells are much larger than LCIS and have all sorts of funky (excuse the unscientific term) qualities that are considered bad news in grading other types of breast cancers - breast cancers that are more aggressive - like larger nuclei, central necrosis and calcifications. Also, they have identified distinct molecular markers that are also present in pleomorphic lobular cancer. So I'm uncomfortable with assuming it will act like classic LCIS. I think that, bottom-line, we have to admit that we have a very rare form of breast cancer that little is known about, but that shares some molecular and cellular characteristics that are present in aggressive cancers. I'm thinking that perhaps that's all I need to know to make a logical decision. It is a standard of care that if you actually have the animal, it should be removed totally, like DCIS. The only question, then, is about the contralaterality of it. If it is contralateral (and we don't know, because it isn't plain old LCIS nor are there enough studies) then perhaps it should be treated as tho you have the animal present in both breasts - like if you had DCIS in both breasts. I don't know if PLCIS is always large, like mine was. Mine took up most of my breast, yet they were hardly able to detect it - so the surveillance route, in my case, seems a very risky proposition. I do think that they are actually learning more about this, and we may have a clearer answer - if not studies that are totally focused on PLCIS, then logical conclusions we can make from work on other cancers with similar characteristics.I feel closer to a decision, but still not quite there, We look for a clear answer, but it just does not exist. Crappy!

  • nash
    nash Member Posts: 2,600
    edited August 2009

    But the standard of care isn't excision of PLCIS at all institutions, and that's just my point--no one really knows what is medically necessary. I've had more docs tell me I could ignore the PLCIS than I've had tell me I had to have it removed. As we all know there is no consensus on this. And I wasn't trying to imply that everyone who has a bilat mast wants one, but there are a lot of women on these boards who have the surgery done for peace of mind rather than medical necessity. You're approaching your case the same way I approached mine--lots of research and critical thinking. Unfortunely there's just not enough research available for us to decide on data alone, and that's why we're all sort of left hanging in the dark and left to our own devices on this one. 

  • nash
    nash Member Posts: 2,600
    edited August 2009

    And I should add that my pleomorphic ILC was completely surrounded by PLCIS, which would lead one to think that the invasive cancer arose directly from the PLCIS. Yet the PLCIS has been completely stable for two years. Go figure.

  • rabrams
    rabrams Member Posts: 26
    edited August 2009

    hi, i was diagnosed last july with LCIS after a biopsy, my third in 7 years.  went to see oncologist to see if i was a candidate for Tamoxifan but am not since my mother had a clotting issue in her 30,'s.  so i've waited the year and gone through testing every 5 months, mamo/sono/mri.  taking a major toll on my life waiting for them "to catch it early".  my gyno/surgeon all agree time for mastectomy.  took me a full year to process this, and just scheduled my surgery for sept.  i am 45 and not willing to gamble any more, nor can i mentally take the constant monitoring, to find out the inevidable of cancer someday.   anyone else with LCIS have any opinion, would love to hear.

  • Krisc
    Krisc Member Posts: 33
    edited August 2009

    Hi Rabram,

    I understand the anxiousness you are feeling with LCIS.  I was diagnosed April of this year.  I have decided for now to do the close monitoring, and I will start on either Tamoxifin or Evista soon.  I met with the oncologist the 1st part of August, and he recommended Evista since I am 54 and no longer having periods.  I am wondering if Tamox is a better choice and have made an appointment to meet with him again next week.  I also have some questions and need some clarity on a couple of things.......if that is possible with LCIS.  I don't think that it is a certainty that we will develop invasive breast cancer with this diagnosis, my oncologist says a life time risk of 25 to 30%.  I have read different stats, but it appears nobody really knows.  It certainly is un-nerving to say the least.  I will be honest and tell you that I think about this unknown LCIS daily and even wonder about having a mastectomy.  I guess I will give myself some time and see how things go.  I do have a friend who was diagnosed 11 years ago, with no problems/biopsies during that time.  Also, others on  here have been dealing with LCIS for a while too and are doing great.  BUT,,,,it is scary no doubt!!!!  So do your doctors recommend BM at this time? All my docs think it is a bit extreme for now, I just have to trust them for now.  Take care.....I completely understand your feelings. 

  • nanannlan
    nanannlan Member Posts: 17
    edited August 2009

    welcome, rabrams

    where do you live?  this may sound like a silly question, but if you read the postings you will see a certain pattern of approach to our lcis and plcis.  why did you have the three biopsies?  did you have calcification?  good luck

  • Minnesota
    Minnesota Member Posts: 923
    edited August 2009

    Nash, et al,

    But I believe the standard of care is excision, at least in the absence of an accompanying invasive cancer. Up To Date says that "the treatment paradigm for classic LCIS is one of prevention, the treatment of PLCIS is more closely related to DCIS, which represents a true precursor lesion to invasive breast cancer. Complete excision of the lesion either via lumpectomy with tumor-free margins and no residual calcifications on mammography or mastectomy is recommended. If a pleomorphic invasive component is present, axillary staging should also be performed, followed by systemic therapy, if indicated." The doc at Mayo told me that my treatment - complete excision (which in my case required mastectomy) - was the right thing to do. That PLCIS is to be treated like DCIS. (This is different than if it is classic LCIS.) The part that is not established regarding PLCIS is what, if anything, to do about the other breast. I think that your case was different in that you had an invasive cancer and the priority of treatment was for that area. But in the absence of that, PLCIS is to be treated as DCIS would be treated. So much of what makes this hard is the idea of losing a breast or breasts and how much we want to risk (while not even knowing what the risk actually is) to keep our breasts. I have a somewhat different outlook now than I did before having already had a mastectomy and reconstruction. In some ways, my remaining breast is more valuable to me than it was. But knowing that I can have a fabulous reconstruction also makes the idea of a mastectomy not nearly as scary as it was before I knew what is medically possible these days (I had DIEP recon and would return to the same doc and probably have skin-sparing and possibly nipple-sparing. I love my reconstructed breast - it's gorgeous to me.).

  • leaf
    leaf Member Posts: 8,188
    edited August 2009

    Your thoughts about PLCIS and LCIS certainly make sense to me, Minnesota and Nash.

  • nash
    nash Member Posts: 2,600
    edited August 2009

    Minnesota, I think you're right in that my case is different b/c I already had the invasive disease. I was thinking about everything from when I went through the decision making process two years ago, and I remember part of the reason the bilat mast wasn't going to be as effective for me was b/c I already had pectoralis muscle involvment, and the surgeon said if I recur locally, it was going to be in the chest wall. Also, tumor board had basically decided that I was at greater risk for mets than anything else, and thus the lump/rads was enough at this point.

    Wanted to put that out there, b/c I don't want to muddy up the waters by generalizing my case to every person with PLCIS. My case went to tumor board 4 times, so I guess I was a bit of a challenge. Tongue out

  • OG56
    OG56 Member Posts: 897
    edited August 2009

    I know you are all well read on our disease but just in case these two articles slipped by you I will recommend them.

    Living Beyond Breast Cancer  www.llbc.org  there are two articles

    1. DCIS and LCIS: Understanding and Managing Non-Invasive Breast Cancers  April 2006

    2. Understanding DCIS and LCIS   October 21,2008

    I found them both to be very informative.

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