PLCIS - clear margins needed?

cornellalum · December 2009

I am starting to panic. My diagnosis after my lumpectomy three weeks ago was PLCIS - margins were not clear. There was also classic LCIS to the margins. And the needle biopsy in July found DCIS, which the surgeon believes was a correct diagnosis, even though DCIS wasn't found after the lumpectomy.

My BS says we don't need clear margins on the PLCIS. Everything I have read and heard says we do need clear margins. A number of you have been very helpful in educating me about all this. So here's the bottom line: do I need clear margins? And how do I know? If my BS says no, how do I "prove" him wrong?

I swear, I feel like I have a ticking time bomb in my breasts. It's like I was lucky enough to get a warning that I'm going to get breast cancer, and I haven't done anything to stop it. If he doesn't think we need clear margins, why on earth did I have the lumpectomy to start with? The more I research, the worse this pleomorphic LCIS sounds. And they identified microcalifications in my other breast last July. So who knows what's been going on in that breast?

I have an appointment with a rad oncologist on Monday, but I couldn't get in to my medical oncologist until after New Year's. Am I supposed to wait until then, and smile through Christmas?

Sorry for the rant, but thanks to all for letting me vent.

(and hey, do we need our own forum for PLCIS?)

Minnesota · December 2009

Oh boy, here I am again. I hope you don't start to get really sick of me!

I just want to say that you don't need to panic. Whatever this thing is, it is probably, at worst, a precursor. It's "in situ", and so far your body is holding it's own against it going anywhere other than where it is right now - be happy about that. So there is time to think. Tho the thinking is driving me nuts, too!

And, as you know, some of the jury is still out - that's why the different opinions. It's the lot of all of us here. Crappy. But could be way worse. It's incredibly frustrating and scary not to be able to get a straight answer, and if anyone claims to have the answer, they don't really know what they're talking about. That's what gets me. All the docs I've talked to, and some will still look at me like I'm nuts. I have quoted the stats to them just on plain old LCIS - which are somewhat established, kind of - and they say, "Oh, I don't think your risk is that high! Where did you get that idea?" And then I pull out the research study from Mayo Clinic. "Oh." Or, "You don't have to worry about it being 'pleomorphic' - that's just pathologist lingo. It has no impact on treatment." I have been gathering all the info I can find, hoping that I will get some kind of clear answer - but the reality is that there just isn't one yet. Doing nothing, doing something (and you know I'm talking here about whether to do the other side) - both can be justified medically, given what they know and don't know. It's maddening! For me, I think it's going to come down to whether I can live with the uncertainty or not. I have never wanted to be motivated by "just" baseless fear. I have found out that the fear we have about this is definitely not baseless. So then how much of a basis is there? No one can tell us. They can only extrapolate from the things they do know and make a best guess. And unfortunately we find ourselves usually knowing more about this than the doctors we see, because this is so rare and we've read up on it. They haven't.

After all my venting here, tho (sorry, since this was your thread!), it does seem that some of the jury thinks they should get identified PLCIS out - treating it like DCIS. Some are definitely recommending this, tho some are not.

I hear you! I hear you! I hear you!

cornellalum · December 2009

Minnesota - It's impossible to get sick of you when you keep making so much sense! Thanks for talking me off the ledge!

You are absolutely right that we know more than the docs - my med onc also did not believe that the risk was so much higher with LCIS until she called a colleague at U of Pittsburgh. Then she also said "Really? Oh." (she really said that - I was sitting there while she was on the phone) Where can I get my hands on that Mayo study - I'm not sure I've seen that particular one.

I know that there's no big rush, but it has been a year and a half since I started with these issues, and I just feel that I am no closer to "fixing" it, while these darn cells in my breasts are deciding whether or not to stay put. I'm also frustrated because I feel like I got a lumpectomy for nothing - I don't have clear margins, but the BS says that's OK.

Here's my major issue: I have found research that says that they don't know if you need clear margins on PLCIS, and I have found research that says that you do need clear margins on PLCIS. However, I have not been able to find any support anywhere for my BS's opinion that you do not need clear margins on PLICS.

Has anyone ever found anything that says it's OK to not have clear margins on PLCIS?

macksix6 · December 2009

Cornellalum, Eve is correct in that you have time as PLCIS is an "in situ" dx meaning it is contained and has not invaded to the surrounding tissue, you are catching everything at its earliest stage. The reason for the lumpectomy is two fold. First to see if they could remove all of the PLCIS area , hense clean margins and secondly to see if they could find something else lurking around the PLCIS, like an invasive cancer.

I would get a second oncologist opinion, if your current Dr is ok with just leaving it in. The general consensus is that under a microscope it looks very much like high grade DCIS (precusor to invasive cancer) .These cells are described as being 4 to 5 times larger than LCIS cells, with necrosis and calcifications. Very abnormal cells.

In my case I had 2 excisions( 3.8 X 4.0 X 2.1 and 5.5 X 4.8 X 2.0) and could not get clean margins. Both my oncologists recommeded the PLCIS had to be removed. I had a mastectomy and the pathology report indicated extensive PLCIS and found another area of PLCIS that we were not aware of. If I was able to get clean margins on the other lumpectomies I would never have known I had another area of PLCIS in my breast lurking around.

Get another opinion. There are many Drs out there that are not keeping up. Cathy's (mykidsmom) Dr didn't take her seriously and she was dx with a small area of invasive cancer with her PLCIS. She is now educating him.

macksix6 · December 2009

Sorry Cathy is (formykids)

Anonymous · December 2009

Hi Ladies,

I may not be the best person to weigh in on this topic, but I will tell you what my Dr's have said about it.

I didn't know anything about PLCIS until after I had BMX for ILC, which turned out to be pleomorphic as well. My pathology report showed that I had extensive PLCIS in both breasts as well as the ILC on the left side. I saw a radiation oncologist for a consultation, (turned out that I didn't need rads) she walked me through my pathology report, and stated that she was very glad that I had BMX because of the extent of the PLCIS, and that although it is just an indicator for future invasive cancer, it was more risky because of the pleomorphic component. This is also stated in the pathology report, in that the pleomorphic variant has a less favorable prognosis. I asked my medical oncologist about this as well, and she said that it's being pleomorphic means that the cancer is more aggressive. I was randomized to chemo through the TAILORx study with an oncotype of 24, but my med onc said she would have encouraged me to do it even if I hadn't been randomized, because of the pleomorphic component.

I feel for you ladies who have to worry, wonder, and what. I would defiantly get a second and even third opinion about the clear margins. If it were me, I would want my dr's to treat this condition like DCIS, because I think it is more aggressive than classic LCIS, and warrants more aggressive treatment. Good luck, I will keep a good thought for you, and for positive outcomes. I hope you are able to have a peaceful holiday season.

Hugs,

Susan

Anonymous · December 2009

Hi Cornellalum

I probably am also someone who is biased because of what just happened with me, but I just wanted to add here in case it might help you with your decision. I know these decisions are so difficult to make and for me it did and does help to hear the more information.

When I was diagnosed with classic LCIS, it had marginal involvement on lumpectomy. The opinion received from family doctor, general surgeon, medical oncologist and two surgical oncologist at a different facility were all in agreement, clear margins are not required with classic LCIS.

When I was diagnosed with PLCIS all of the same doctors as well as, it went to tumour board and it was agreed that clear margins are necessary. In my case they did end up finding not one but two areas of ILC in their attempt at getting clear margins, and the PLCIS is still at two margins.

Now my decision is to whether or not I should have unilateral mastectomy or bilateral. I have two doctors saying unilateral and two doctors saying bilateral. For me, I found the article that minnesota referred to (I think it is on the PLCIS and research thread) was very helpful and leads me towards the bilateral. I think the numbers speak for themself. I don't want to have a mastectomy and try to think of every excuse why I might be able to get out of it, but I just seem to keep coming back to it is the best medical decision I could make. The surgical oncologist did give an option of another lumpectomy, but I am small breasted and they have already taken so much out that I think this would be disfiguring as well as leaving the question of what else is in there?

I don't know if this helps. I just wanted to let you know, you are not alone in trying to make the best decision for ourselves.

Take care and thinking of you

Cathy

Anonymous · December 2009

Hi

I just wanted to add to macsix6 comment about educating doctors and how there are some out there that aren't keeping up. My experience has also shown me, that not only do we know more than the doctors, but also some pathologists. I had a conversation with one the pathologists from my local hospital, and he had not even heard of PLCIS, let alone know how to diagnosis it. Apparently according to my surgeon, he has since then researched it. My surgeon had another lady since me who the pathologist diagnosed as DCIS, when the surgeon asked for confirmation on DCIS and not a possible PLCIS, he did now know what he was talking about.

Also the breast screening coordinator at our hospital had never heard of it. So when I try to find any positive in all of this, at least I know in my city, the word is out about PLCIS, due to my unfortunate circumstances.

cornellalum · December 2009

You ladies have hit exactly on my fears - somewhere in all this PLCIS I've got, is some ILC, and if we don't get the PLCIS, we'll miss the ILC. I am becoming more convinced that PLCIS leads to ILC, since it has co-existed in so many studies that I have read (and in a bunch of us here on the dicussion boards). I realize that the medical world won't say that PLCIS morphs into ILC absent some "scientific" proof, but I'm really not willing to put my life on the line because someone hasn't proven something beyond all shadow of a doubt. And since ILC is so hard to find using current screening tools, it makes me even more nervous.

By the way, I have found information from both Stanford and M.D. Anderson that says that their standard of care requires clear margins for PLCIS. So I will be sending that information along to my BS. Cathy - what hospital are you going to?

I have an appointment with a rad onc tomorrow, so we'll have another opinion.

I also have a health benefit at work called Best Doctors. They gather all your medical information and send it to an expert in the field, and validate diagnoses and treatment plan. They re-read all the screening (mammograms, MRIs, pathology slides, and everything). I have been working with them, and they are gathering the medical information. They said that breast cancer cases go to a doctor at Brigham and Women's in Boston (affiliated with Harvard), so we will get another expert opinion. I am hoping that we have it before Christmas.

Thanks for all your help, and I'll keep you posted. I don't know what I would have done without all of you right now.

Chris

Anonymous · December 2009

Hi Cornellalum

I am going to Sunnybrook Health Sciences in Toronto.

Please keep us posted. It will be interesting what this new hospital has to say about it.

Take Care

Cathy

cornellalum · December 2009

Well, I went to see the rad onc today. Guess what? She had no idea what to do with PLCIS. In fact, when she had reviewed my case before the appointment, she had just highlighted the DCIS and classic LCIS diagnoses on the pathology report. She didn't even mention the PLCIS diagnosis. And when I pointed it out, and said that I was really concerned about the PLCIS, since we didn't get clear margins on it, she looked very skeptical about it. So she called the hospital's "breast cancer expert" and he said it was just LCIS, and didn't need to be treated any differently. So I pulled out my binder with all the studies that I have printed out, and she was very interested in all of it. I told her that both M.D. Anderson and Stanford treated PLCIS like DCIS, and she flipped through the studies. She wrote a bunch of stuff down, and she printed out the NCCN guidelines, which basically say that PLCIS may be more aggressive than LCIS, but they have no treatment guidelines.

And she said that she would take my case to the hospital tumor board, and get back with me. So once again, like you ladies have said before, the PLCIS patient had more information than the doctor. Sigh.

Minnesota · December 2009

OMG, Chris! We keep playing this scene over and over, don't we?!

leaf · December 2009

Sheesh! Sounds like Groundhog day. I'm so glad you had the presence of mind to bring the studies. I'm glad you all are doing an excellent job of educating your docs! My heart goes out to you.

cornellalum · December 2009

Here's the latest - I got a call from the rad oncologist, and she said that the local hospital tumor board discussed my PLCIS case on Thursday. She stated that no one had dealt with PLCIS before, and that since there were no solid recommendations regarding its treatment, they did not come up with a recommendation (?!?). She stated that their opinion was that if I wanted to minimize any risk associated with PLCIS, I would need to get a mastectomy, but that it was my decision. She also told me that my medical oncologist was at the board, and that I should call her with any further questions. So I have a call into her.

I also sent some detailed questions to my BS (who is at the breast cancer symposium in San Antonio!), and he called me last night. He is now saying that we should go back and try to get clear margins. He was not sure that he can get clear margins, but wants to try. So he wants me to schedule a re-excision for after the holidays. He also said that he was going to talk to folks in San Antonio about PLCIS, and that he would check the program listing there, and see if there is anything there about it. I will let you all know what I hear from him.

He said again that all he does is breast cancer and I am his first patient with PLCIS, so it is extremely rare, but that this is an opportunity to educate doctors about it. He said that I appear to know a lot more about PLCIS than most doctors. I have to agree - so far I haven't come across any doctors that have treated it, and only a few have even heard of it.

So now I have to decide whether I want to try re-excision, and whether I will be satisfied if they get clear margins, or if I want to go straight to a mastectomy. Something to do over the weekend......

Anonymous · December 2009

Hi Cornellalum

I wonder if the board mentioned anything to you about radiation for PLCIS? Prior to me having my lumpectomy, I was told that if/when clear margins were achieved I would have to have radiation. If I had a mastectomy, I would not require radiation.

However, now that they have found the two invasive areas within the PLCIS, I am possibly faced with having radiation and/or chemo, depending on if they find it in the nodes when I have the mastectomy. The other thing for me now is, they are not recommending immediate reconstruction because of finding the ILC. They want me to deal with the cancer and treatment right now and think about the reconstruction later, once we have the full picture.

I know these are very difficult decisions to make, and it makes it even harder when we can't get confident answers to our questions from the specialist. They just don't know enough about it.

I can truly empathize with you.

Cathy

Minnesota · December 2009

Cornellalum,

Thanks so much for the update! I'm so glad your BS has been educating himself about PLCIS and also that he has obviously listened to and heard your concerns. That must be very affirming for you! I know that I feel vicarious affirmation just reading your post about it! It will be interesting to find out if he learns anything else at that conference.

Cathy,

And I hear you about the question still remaining about radiation. Also, I have that question about: what about the other side? Is this a bilateral beast like plain old LCIS?

Thank goodness we can all empathize with each other!

Anonymous · December 2009

Cornellalum, ((((((Hugs)))))), I will be sending you good vibes this weekend as you are considering your options. I am glad that your doctors are listening to you and are accepting of the fact that you have a lot of knowledge about PLCIS. I respect you so much for being persistent and advocating for yourself.

I hope you are able to have a peaceful weekend.

Take care,

Susan

leaf · December 2009

I'm not sure when PLCIS was first described. When I type in 'PLCIS' into Pubmed, the earliest citation I can find is from 2000. In that abstract it says PLCIS was 'recently described'. So the few cases of PLCIS I can find have not been followed very long.

Theres this 'description' in 1996. http://journals.lww.com/pathologycasereviews/Abstract/1996/05000/Pleomorphic_Lobular_Carcinoma_In_Situ.9.aspx

This lecturer (in 2007) describes several different categories of PLCIS

LIN (LCIS/ALH ) •    Tavassoli subdivided LIN into 3 grades:
•    LIN1: partial or complete replacement of the acinar epithelium- NO distension (ALH)
•    LIN2: cells fill & distend some or all acini- acinar outline remains distinct (stroma)
•    LIN3: (Type A)- Confluent acinar distension (NO stroma)
(Type - Pleomorphic variants- high grade variants (signet ring cell, histiocytoid, apocrine cell), with or without acinar distension ...

CIS with Indeterminate Histologic features (Pleomorphic variants (PLCIS)
• Group 1- LCIS with necrosis • Group 2- LCIS with pleomorphism • Group 3- Histological overlap with DCIS ...

UNKNOWN: if the level and laterality of breast cancer risk associated with PLCIS is similar to LCIS or DCIS www.iap-ad.org/aleppo-lectures/day3/ILC-%20Allepo%202007.pdf (there's some nice microphotgraphs and descriptions in there too.)

In this paper, this person opines:

Although the term “pleomorphic” is recent, older data suggest that LCIS is not cytologically homogeneous and that nuclear grading of the lesions has clinical relevance. A 1993 study by Ottesen demonstrated that three fourths of recurrences in women with LCIS occurred among those with lesions having “large” nuclear size. Those authors also found that disease recurrence/progression was more likely in patient having more extensive disease (i.e. those with involvement of >10 lobules). This tendency has also been observed with ALH (see Degnim et al) and I am surprised that extent of disease has not achieved utility as a parameter in clinical decision making for patients with LN. www.pathology.med.umich.edu/./07/./Case%208_Visscher.doc (emphasis is mine)

I don't know how widespread these views are - it sounds like everything is controversial, as usual.

cornellalum · December 2009

Cathy -

The BS and rad onc have both stated that radiation is not useful for PLCIS. And I have not found anything in the literature, except for one article that is pretty dated, that suggests radiation. And that study just says that PLCIS should be treated like DCIS, which includes the use of radiation therapy. It doesn't say that radiation has been shown to be useful specifically for PLCIS. If I decide to get radiation, it will be because of the DCIS that they found in the biopsy, not because of the PLCIS.

Minnesota -

Although my BS agrees that PLCIS is multicentric and multifocal, he has been steadfast in his opinion that montoring the other breast with mammograms and MRIs is the way to go. I already have calcifications in the other breast, although right now they are categorized as "benign," and he still says that watchful waiting is the way to go. He has now acknowledged that MRIs are called for, since PLCIS seems to be associated with ILC, which is difficult to diagnose on mammograms. But he says that I still need the mammograms also. So if that is where you are, my BS would agree with your current course of treatment. Are you getting MRIs? How often?

All -

I found a poster discussion at the San Antonio symposium titled "Molecular alteration in Pleomorphic Lobular Carcinoma in Situ (PLCIS) of the Breast" by doctors from the hospital at University of Pittsburgh. It is being presented tonight. I e-mailed my BS about it yesterday, and he said that he would look into it. So maybe we'll learn something else. At least someone is talking about it.

My pondering of the re-excision vs. mastectomy continues........

Minnesota · December 2009

Cornellalum,

I was able to talk my oncologist into allowing me a breast MRI about a year ago. It is not a scheduled part of my surveillance, like mammo. That oncologist has since moved out of state and I am in limbo as to who I will see at my next appointment. I'm fairly certain I will have to make a case to have yearly MRI's, as it has been difficult for me to even find an onc who will admit that plain old LCIS puts me at high risk, let alone PLCIS. (sigh)

You guys are all great at bringing new info to this board! Thanks!

Anonymous · December 2009

minnesota--it took me nearly 3 years to get my oncologist on board with MRIs--he was against them because of the risk of false readings which cause unecessary biopsies and anxiety. I told him I would rather take that risk, than miss an invasive bc. I've never gotten a bill for my MRIs in 4 years, but a portion of my last MRI was questioned, saying it was "experimental and investigational". I called the billing office and they appealed it (it got paid in full). Just said to make sure the doctor writes on my MRI referral that I'm high risk due to LCIS and family history of bc.

Anne

Anonymous · December 2009

minnesota - I think if I were you I would be putting up a pretty big fight to get the MRI. All they need to do is look at all of the women diagnosed with ILC on that board to see it is necessary for high risk women. A very high percentage of them, including myself, had their ILC missed on mammogram or ultrasound. As you know when ILC is found it tends to be larger because it is missed using these other diagnostic tools. I think my case has changed the opinions of a few doctors in my city, they will now do MRI for classic and pleomorphic LCIS

Take Care

Cathy

Minnesota · December 2009

Cathy and Anne,

Thanks for your responses. If I still have the breast the next time I see my new onc, I will definitely demand that an MRI be part of my yearly exam. That's really the only circumstance under which I could even countenance just watching and waiting. I will go in with plenty of ammunition, in the form of studies, etc. I have a much stronger base of knowledge than I had before, and I agree that I would be fighting not just for myself but for any other ladies around here with this diagnosis. It's up to us to get the word out - no one else is going to do it for us - or at least not for a looooong time!

cornellalum · December 2009

The latest news -

I got the recommendation from my med onc after review by the local hospital's tumor board. She thinks that a PBM is a reasonable route to go. This was based mainly on the pathologist's opinion that PLCIS is linked to ILC, which is hard to diagnose on screening. And the bilateral recommendation was because I have calicifications in the other breast, which is how this first one started.

So the tally is: one vote for re-excision to get clear margins on the PLCIS, and one vote for PBM.

I'm going to wait to see what Brigham and Women's says.

The pondering continues..........

Anonymous · December 2009

Interesting the opinions you have been getting. I have 2 votes for unilateral and 2 votes for bilateral. Personally, based on what I have read, the bilateral makes more sense. But it does seem like the knowledge and recommendations on this is all over the place.

Have your doctors given you any indication on how quickly you should have something done? When do you see someone at Brigham and Women's?

Thinking of you as you work throught these difficult decisions,

Cathy

cornellalum · December 2009

My BS says if we do a re-excision, it needs to be right after the holidays "before the cavity closes up." A PBM would not have the same urgency.

Brigham and Women's is looking at all my records and re-reading the tests/slides - I am hoping to hear within a week or two.

If you're getting a mastectomy, and you have PLCIS, I think bilateral makes more sense too. A bonus with PBM - no tamoxifen! With a unilateral, we would still be facing tamoxifen and endless screening (and the worrying that goes along with it) because of the increased risk on the other side.

Anonymous · December 2009

I'm not sure what will happen after I have mastectomy? Although I am hoping and praying not, I may still have to have chemo and/or radiation and/or tamoxifen. It will depend whether it is in nodes or not. I have PILC and PLCIS. The other downside, because I have gone on to having PILC, it seems to be the opinion of some of my doctors is that I should have delayed reconstruction until it is known the full extent of what is going on and what/if further treatment is necessary. Due to the fact that radiation could have a negative impact on reconstruction.

PLCIS - clear margins needed?

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