Pleomorphic LCIS

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

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.

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!

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?

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 (:

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!

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...

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...

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.

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!

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!

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.

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. 

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.).

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.