PLCIS - Need information

EmmaW

Hi. I was just diagnosed with Pleomorphic Lobular Carcinoma in Situ. I can't find a lot of information on it and I keep getting mixed responses. I was told to meet with a surgeon who wants to schedule an MRI before doing any surgery to remove the lump. Does anyone have any experience with PLCIS? Any information? Anything?

Moderators

Hello Emma, and welcome to Breastcancer.org.

On the main Breastcancer.org site it's listed in the Subtypes of ILC section, which also includes links to more information about ILC diagnosis and treatment.

Using the Search function (from the blue navigation menu) with Pleomorphic as the keyword gives results of every time the word is used in others' posts throughout the discussion boards, and could be a good way to start to connect with others who have had the same experience.

Best wishes,

• The Mods

leaf

Here is a thread about PLCIS

https://community.breastcancer.org/forum/95/topic/...

PLCIS is an in-situ cancer, not an invasive cancer. They just 'discovered' PLCIS in the 1990s/early 2000s, so they don't have a lot of info to go on.  In  contrast, DCIS was first discovered around 1900, and classic LCIS was first discovered around 1940.  Most papers I've seen regard PLCIS shares some characteristics with both classic LCIS and DCIS, and is usually treated more like DCIS.  Usually PLCIS is considered to be potentially more aggressive than classic LCIS.

This is an overview of LCIS and its subtypes from a lecture in 2012 from a person at UCSF (which is an NCI certified cancer center).

https://docs.google.com/viewer?a=v&q=cache:jxDKPQCB3TUJ:www.ucsfcme.com/2012/slides/MAP1201A/18YiChenWhenIsLCISClinicallySignificant%20.pdf+&hl=en&gl=us&pid=bl&srcid=ADGEEShwSK22V9mrK0rgZYcLb80yyu3kbomxF1VJr7_Qu-mQNcBgwmgkDCf8xODiof8eTeXBuHCYUxua5w20PwCUFnIaz8UdzEV3HjQIBP-Ttvquezt02YHZ_yPfnnPIzOZc7V8aXWlq&sig=AHIEtbQHJTe9hBp7ztJY4dOoBYyDwPf-oA  which may give you a better overview.  I certainly wouldn't expect to understand everything if I was just diagnosed.

Here are some abstracts from research (from Pubmed).  If you just got diagnosed, the learning curve can be pretty steep.

http://www.ncbi.nlm.nih.gov/pubmed/?term=PLCIS

EmmaW

Thank you for the information. I am vacillating between total panic and complacent denial. It's a strange place to be. On the one hand, technically this doesn't seem to be "cancer," but on the other, the treatment is more aggressive than just "let's just watch it." At the same time I am told "don't worry" I'm also told that it is possible that recommendation will be a double mastectomy. I don't even know how to tell anyone about this. It's this complete gray area. 

I have to schedule an MRI but I have to wait until my period before it can be scheduled. I have a meeting with a genetic counselor this week and truthfully, I'm not even sure I should do the testing. 

I'm just flying blind here and I think I might be losing my mind with this perpetual cloud hanging over me.

leaf

Its really hard to be diagnosed with an unusual condition.  If you have an unusual condition, there isn't much of a track record to follow.  And, since its unusual, not many people have it, so there is less pressure to study it. 

Almost everything about LCIS is controversial (even classic LCIS).  That means there are few wrong selections to pick.  On the other hand, even if you had a very common cancer, such as invasive ductal carcinoma, there are still lots of unknowns.  My former oncologist said dealing with cancer is like looking at a pitch black room with a flashlight.  That's probably why so many cancer patients have choices to make on what treatment they want.  

On the other hand, PLCIS is *not* invasive, so its not as serious as invasive breast cancer.  

I had what ended up being a weak family history, but I really got a lot out of a genetics counseling by a board-certified genetics counselor (even though I wasn't tested.)  (I have now had a few more family members who have been diagnosed with breast/ovarian cancer, and they have changed the USPTF  (US preventative task force) guidelines for BRCA screening last fall or so, so one of my docs questioned if I should be screened again, so its possible my family history may be a bit stronger. )  I was not pressured in the least by my board-certified genetics counselor (in 2006).  

I'm no expert on this, since I have not had PBMs, but from what I understand, I think it can be an option, after the MRI, to have your lump excised, then, if its found not to have anything worse (worse being DCIS or invasive breast cancer, although I may be splitting hairs between PLCIS and DCIS), you can decide on your treatment plan more at your leisure.   If your biopsy turns out to be nothing worse than PLCIS, then you may have more time to decide your treatment choices than, say, someone who has invasive breast cancer.  From what I understand, people with invasive breast cancer generally have to decide their initial treatments usually within a few weeks/months of diagnosis.

I was really anxious about everything when I was first diagnosed.  After a few years of having negative (i.e. nothing of concern) imagining for several years, then my anxiety level about LCIS went down.

I think women at all stages of the breast cancer spectrum often go through stages of 'De-Nile'. I think there's nothing wrong with denial, as long as you're getting the recommended treatment/screening.  I think it can be absolutely destructive to tell someone else 'they have to be positive' or 'they should be positive' or 'how come you don't seem to be relieved when I tell you that you are going to be fine'. (I just  read about one poster who had a friend/family tell her that. I can't imagine what it would be like to be on the receiving end of that statement.)  On the other hand,  if a person comes to the conclusion they will be fine on their own, whether rationally or not, then I'd say more power to them.  I think we all have different attitudes towards our illnesses, and some people are able to 'get on with their life' (whether this is 'rational' or not) faster than others.  Having been on these boards since 2005, I highly suspect I'm one of the people who is more of a worrier; I have more trouble 'getting on with my life.'

KellyMaryland

Hi Emma. I have not been on this forum for quite a while.  Every once in a while I check it out to see the LCIS thread but haven't actually logged in for months? years?  I was diagnosed with PLCIS after an excisional biopsy.  Because of the pleomorphic variety, I suppose, I was told from the beginning that watchful waiting was appropriate but so was preventative mastectomy.  After more biopsies (all benign) and lots of thought and research (not so much out there!)  I did go through with the mastectomies (which revealed no abnormal tissue at all).  I'm happy to talk with you about any and all of my experience.  If you can send me a PM I'll forward my email address- that way I'll be sure not to miss your messages.  Hi to everyone else.

Kelly

Piedpiper

Hello, I'm new to this forum.  I was diagnosed with PLCIS with first a core biopsy, then with an excisional biopsy.  I was scheduled to have a double mastectomy with immediate reconstruction but the surgeon I met with refused to do it.  Each doctor I speak with wants to treat this as LCIS and they tell me it's overkill to do a dbl mastectomy.   When I ask about the Pleomorphic aspect, they blow it off and say it means nothing.  Pretty frustrating.  I'm now going to meet with a high risk breast cancer doctor who might hopefully know more about PLCIS.  Everything I read points to the same analysis, that it's aggressive and at a higher risk of becoming invasive.  Any thoughts?  PiedPiper

leaf

I only have classic LCIS, but my breast surgeon (who did my breast excision) totally refused to do 'any further surgery' on me.  Her first words to me (before she even asked about my family history) was 'If you want prophylactic mastectomies, I'm going to sit down in a chair.'  I can't get along with her at all.   If I would have had a significant family history, then I think the story really changes, even if you're against giving PBMs to classic LCIS women. So, yes, some  breast surgeons refuse to do PBMs on LCIS patients.  If she would have been willing to do PBMs, I would much more likely to have them.  As you found, if you can't find a surgeon to do the surgery, you aren't going to have the surgery.

Of course, the choice for PBMs is very individual, but I'll tell you, for me,  if I had PLCIS, I'd be really searching for a surgeon to do them.  For me alone, if I couldn't get a breast surgeon to do them, I'd be hunting for a general surgeon who would, not caring if they were an excellent plastic surgeon or not.  I would make sure, though, that both your surgeon is willing to do the operation, and that your insurance will cover it.  Many physicians and hospitals are getting paid less with the Affordable Care Act, and if you have a higher co-payment, I'd sure want to know before rather than after.  Several women here have said they didn't have trouble getting covered for PBMs for LCIS, but I don't know if they had a significant family history, and insurance companies may be looking for cutting benefits now.  Maybe I'm an old-fashioned stick-in-the-mud, but I'd really want to know my financial burden (if any) beforehand.

One woman here (sorry, I can't remember which one) pointed out that PLCIS not only have the 'subsequent cancers often appear in areas in the breast that looked totally normal on imaging' and the increased risk of ILC (aka 'the sneaky one') that classic LCIS women have, they also have the increased potential aggressiveness of a 'DCIS-like' condition.

I can certainly understand why PBMs may not be a good choice for some people.   They may not be able to be off work that long, they may not get the cosmetic results they want, they are at risk for infections, they often loose a significant amount of sensation, they may be a poor surgical candidate,  it may be too expensive, etc.

When I had genetic counseling, my genetic counselor pointed out that there are some women who, even though totally BRCA positive, and have ~85% lifetime chance of getting breast cancer, still choose to not have PBMs.  I may not totally understand that choice given the risks of some of these people, but I certainly support whatever choice people make for their own situation.

I would only encourage everyone to look at all the risks and benefits of their choices, look at both their brains and hearts, and make the best choice they can.

Piedpiper

Thank you for your reply Leaf.  I was actually approved for the procedure.  It's just that they don't understand the significance of PLCIS.  The surgeon even admitted that he didn't know much about it.  He was lumping it in the same category as LCIS.  I have had to provide the research to them.  He said if a high risk breast doctor said that a dbl mast is reasonable for this condition, he would do it.  The oncologist treated me like I was being ridiculous for wanting a mastectomy.  He said "pleomorphic" means nothing and then insulted me for researching on the internet.  He said I wouldn't understand what I was reading unless I was in the medical field.  Then I told him I was in the medical field.  So then he said I should only be looking at NCI.org and cancer.org and I said those are the sites that I have visited.  We definately did not connect.  But I find it outrageous that he is an oncologist and doesn't understand the significance of PLCIS.  I'm venting a little here.  I hope you understand.  So my hope is that the high risk breast physician will.  But I'm taking my research with me.  Hoping to get in next week.  I have a connection with the doctor I work for.  Thanks Leaf.

leaf

I would definitely search Pubmed. http://www.ncbi.nlm.nih.gov/pubmed When I was/ am being considered for unusual diiseases, that's what my hospital's electronic system uses.  It the largest collection of peer-reviewed academic papers in the world.  It does not have _everything_ though; I did hear in one podcast (by scientific researchers - virologists and microbiologists) that they would have to go to Paris, France to get a copy of a paper written by Louis Pasteur in the ~1870s, and its in French.  (I don't know if it was peer-reviewed, or if they had peer-review at the time.)  I have been told that all Pubmed papers have been peer reviewed, but I have not personally verified that.

I have not searched for hours on Pubmed about PLCIS. Of course, I can't guarantee that you'll find something new.  But do know that the Pubmed search is _very_ sensitive to search terms.  Even slightly different search terms can give you different results.

As you can see from my thread (?'Graduating from seeing a breast surgeon/oncologist?' in the LCIS forum), you are not alone in suspecting your oncologist/breast surgeon may not be up on the esoteric.  I do have problems in acting superior when I am threatened though, and I suspect now, after a few days, that its probably due to money/resources.

If it makes a difference, at one point, my oncologist supported my interest in a PBM, but of course, since they wouldn't be doing it, that didn't help.  In the hospital where I work, I've certainly seen patient's charts where the hospitalist (not a surgeon) supported having surgery in a certain situation, but the surgeon refused.

I'd be so interested to hear what you find.  In any event, you'll probably learn a lot.

girlygirl13

Piedpiper i feel your pain. When i was first diagnosed with PLCIS by needle biopsy after large spot on mri every Dr and specialist reccomended prophlactic bmx based onthe type and my family hx. All Dr said that because it was plcis chances were that lumpectomy would not take care of it and chances were i would have to keep going back to clear margins. I ended up going with prophlactic bilateral mx with skin and nipple sparing which was reccomended. I was not ready for the pathology report that said one nipple was involved with plcis and margins not clear. Since then i have removed both nipples and attempted to clear margins . pathology reprt back and surgeon said it was good news but as i read it it seems margins still not clear. wondering what to do now??? frustrated cause its as if i did lumpectomy going back in forth. i feel like my prognosis is still the same as if i did nothing, maybe worse cause now i cant have mamogram or mri for future surveilance. has anyone eles had similiar experience??

Piedpiper

Thank you Leaf for the information on pubmed.  I have done some research on that site but I didn't know that the hospital's electronic system uses it.  That's very helpful to know when you're trying to talk to a doctor about your condition.  Thank you girlygirl13 for your thoughts.  It's nice to speak with someone who's been through it and understands my concerns.  I do have an appt set up with a high risk breast cancer surgeon and I'm anxious to see what her position is on PLCIS.  Piedpiper

leaf

The U.S. National Library of Medicine, of which Pubmed is a part, is the world's largest medical library.  

The U.S. National Library of Medicine (NLM) is the world's largest medical library.

http://www.ncbi.nlm.nih.gov/pubmedhealth/about/

Medical researchers/providers are the most frequent customers. I saw *my* doc do a Pubmed search on my unusual medical conditions. (I have one more unusual than classic LCIS.)

Different hospitals use different electronic systems.  Whether you access Pubmed by your home computer or in your hospital, its what most researchers/health providers use if they want detailed information.  Some, not all, of the articles are free. On the Pubmed site, it says that not all articles in Pubmed are peer reviewed/ refereed, but most are.

Of course, as in reading all scientific papers, critical thinking is required.  But I highly doubt there is another place where you will find more references to an unusual medical condition. 

Piedpiper

I have an appt this wednesday with a doctor who is a high risk breast cancer doctor who just went to a conference on PLCIS.  So I'm very interested in what she has to say about the treatment.  Right now I think I would only be comfortable with a dbl mastectomy but maybe she can convince me otherwise.  Piedpiper

beacon800

please let us know what you learn from your doctor!  Nice to see some new information if possible.

EmmaW

So I had an interesting conversation with an oncologist at Sloane Kettering who told me that PLCIS is a fairly new diagnosis and is definitely NOT managed the same as LCIS. He said that classic LCIS can be watched, but that PLCIS, while still not cancer, is universally removed primarily because it has more aggressive cells. He also predicted that they will more than likely change the name of PLCIS in the next few years or so. I thought that was kind of interesting.

In my personal case, he confirmed what two other surgeons said and that is that I will have to remove the entire breast. This is only because the area of PLCIS is so large (9 cm). If it was smaller, a lumpectomy would be advised.

Truthfully, it was a good conversation because he set my mind at ease about the recommendation. 

beacon800

thank you for this information.  I had a small amount of plcis in 2009 and at the time it was really unclear what the management should be.  Due to a strong family hx I did a bilateral and am very happy I did.

Considering the size of the area you have, my thought is your doctors are definitely making a good decision, even though it must be hard to accept in some ways.  But hopefully that area will be lcis and nothing more and you won't have to worry about it again.

When I had mine it was hard because my case was controversial.  Some doctors thought I was over treating, some thought I was doing the best thing and some didn't know what to think.  I was  at Stanford, a leading cancer center, and it was still confusing.

EmmaW

The way it was explained to me was that classic LCIS is a risk factor for future breast cancer. Pleomorphic LCIS is more like a pre-cancerous lesion. 

Sucks all around. :-(

tlr1128

I also was diagnosed with PLCIS last year.  It was recommended to me by my Oncologist and Surgeon to have bilateral mx.  I had surgery on March 12, 2014 and am currently doing the tissue expander reconstruction.  When I got the pathology report the side which was initially diagnosed with PLCIS also had Atypical Ductal Hyperplasia, Atypical Lobular Hyperplasia.  The other side which other than knowing LCIS is typically ipsilateral also showed Atypical Lobular Hyperplasia and Sclerosing Adenosis.  All of these things when I researched them on the internet had some degree of increasing risk of invasive cancer.  Surgeon said I was extremely lucky to have done the surgery when I did.  Indeed, I feel blessed and feel like I made the right decision for me!

Piedpiper

Thank you for all your comments and replies.  The doctor I saw was wonderful.  She spent about an 1 1/2 with my husband and me explaining everything.  She had just attended a seminar and one of the topics was PLCIS.   In the end, she said it should be treated like high grade DLCIS.  Lumpectomy (which I already had) followed by radiation.  Yesterday she called me and said she received my pathology slides and said I have a 7mm clear margin which she thought was fantastic because they only try for 2 mm clear margins.  She meets with the tumor board next week but she thought because of the large clear margin I might not even have to do the radiation.  I'm a little skeptical mainly because of what tir1128 posted.  Those have been my thoughts as well.  What if you're missing something?  Well, I'll let you know next week. 

leaf

There is a lot we don't know about how the natural history of breast cancer. 

Classic LCIS is almost always multifocal (meaning there are many spots of it in one breast) and often bilateral (meaning it occurs in both breasts).  They know this because prior to ~1990, they routinely did bilateral mastectomies on women with classic LCIS, and they looked at the mastectomy specimens. But most classic LCIS patients (at least those without other stronger risk factors) never go on to get breast cancer.

**IF** PLCIS is multifocal, and **IF** you can't detect PLCIS on imaging, then clear margins may not be relevant because if a PLCIS patient has as many PLCIS lesions as classic LCIS patient has classic LCIS lesions, a PLCIS patient would have multiple undetected PLCIS regions in one or both breasts.  In other words, if PLCIS is multifocal, and we can't detect where PLCIS is, then we can't remove it without a mastectomy.  I can't find anybody stating that PLCIS is multifocal or whether or not PLCIS is reliably detectable, but those two statement are true with classic LCIS.

The only paper I find that comes up when I search for PLCIS multifocal, is a paper on pleomorphic invasive lobular cancer, which finds that in 45% of the cases, there is PLCIS associated. http://www.ncbi.nlm.nih.gov/pubmed/?term=PLCIS+mu... .  This isn't very helpful for those of us without ILC, besides a presumption that some cases of PLCIS may progress to pleomorphic ILC.  There is previous information that some cases of classic LCIS are clonally related to subsequent ILC, so this is not unexpected.

********

As far as the risk of subsequent breast cancer in patients with PLCIS: here's a new paper (June 2014) on 47 cases of PLCIS, 31 of which had no concurrent or past history of breast cancer.

Cases of PLCIS
(n = 47) from a 12-year period were reviewed. The clinical, radiological
and pathological findings were recorded. Immunohistochemistry for
oestrogen receptor (ER), progesterone receptor (PR) and HER2 was
performed. Thirty-one patients had no concurrent breast cancer or past
history of breast cancer, and six (19.4%) of these had local recurrence;
all tumours (four invasive carcinoma and two PLCIS)
were ipsilateral. Younger age at presentation was a risk factor for
local recurrence: patients with recurrence had a mean age (range) of
52.5 years (44-59 years), versus 60.6 years (40-81 years) for those
without (P = 0.03). Three of 31 patients were treated with radiation
therapy (RT), and none of these developed local recurrence. PLCIS
had an adverse ER/PR/HER2 molecular profile, with at least 41.2% of the
cases overexpressing HER2. Moreover, at least 11.7% of the cases were
triple-negative.

http://www.ncbi.nlm.nih.gov/pubmed/24372322

So, if I'm reading this right, of the 31 patients with no concurrent or past history of breast cancer, six (19.4%) had a local recurrence: 4 invasive and 2 PLCIS over 12 years.  The abstract doesn't say how long the observation period was for individuals or the group, but only 4 cases out of 31 (13%) progressing to 'something worse' (in other words invasive) is hopeful, since the 'estimated' values one gets for classic LCIS (without any additional stronger risk factors) is around a lifetime risk factor of 30%. The abstract doesn't say what treatment the PLCIS patients got except for radiation in 3 of them, or if any got mastectomies.  I am going out on a limb here, but in the absence of any mention, I presume that most/all of these patients did not get mastectomies, but that is just a guess.  I guess you'd have to either pay to see a copy of the paper online or go to an institution that carries the paper to read the original paper.  Or, from what I understand,  it can eventually come into the public domain under some circumstances.

grandmaof4

Ladies, I'm so glad to be able to read your comments. I wonder if anyone else here with PLCIS is taking Evista. (Can't take Tamoxifen due to previous stroke.) After 5 years (Feb 2015), my oncologist wants me to stop and I'm very uncomfortable doing so. I've been unable to find any studies showing whether the medication "carries over" once it is stopped, whether it increases my risks or what. Dr. says there's nothing to show it's helpful after 5 years. Of course, there's nothing I could find that says it isn't. I just never know what to believe!

Anonymous

grandmaof4----I have classic LCIS, not PLCIS, but I do  have experience with Evista.  I was diagnosed over 10 years ago, had a lumpectomy, took tamoxifen for 5 years, and now have been on evista for over 4 years. All my docs say I can be on it indefinitely, as women take it indefinitely for osteoporosis.  I do take a daily baby aspirin (81 mg) along with it to decrease the risk of blood clots.

Anne

grandmaof4

Thanks, awb. That matches what my first oncologist said too. Have been reading all afternoon but haven't come up with anything I can take with me when I see him in Nov. BTW, I'm requesting that in the future, I no longer see the oncologist's assistants. My last two visits were with assistants who were very nice & good about reading my chart. Doubt either had any idea of what PLCIS is.

Piedpiper

I find out Tuesday whether I will have radiation or not.  It sounds stupid but I hope I do because I just feel they didn't get all the PLCIS.  That it is starting in other places and it just isn't showing up.  grandmaof4 my doctor is Dr. Debra Pratt with the Cleveland Clinic in Fairview Park, Ohio.  She is well known and respected in the area and I feel I can trust her.  She has suggested evista with alternating MRIs and mammograms every six months.  If PLCIS shows up again, I'm inclined to push for a mastectomy.  Piedpiper

Piedpiper

Well I haven't heard from my doctor yet as to what the general consensus was regarding treatment.  In the meantime I was researching when to consider having a prophylactic mastectomy and the mayoclinic, cancer.gov and breast cancer.org all said if a person has LCIS you could consider having a double mastectomy because it has a high risk of coming back invasive. Also, if you have dense breasts, which I do.   So why are my doctors reluctant or rather refuse to do it?  I will be asking my doctor this question when she calls. Any thoughts?  Piedpiper

MelissaDallas

They say it can be considered if you have a strong family history of breast cancer or a BRCA mutation & LCIS. It isn't the RECOMMENDATION for classic LCIS, and most doctors consider it overkill for the risk presented.

leaf

Agree with Melissa (as usual).

Breast density is not usually considered a more significant risk factor (website courtesy of Beesie.)

http://www.breastdensity.info/index.html

Breast density didn't make much difference in predicting breast cancer risk in the 'Italian' model that included breast density. http://jnci.oxfordjournals.org/content/98/23/1673...

These are the NCCN guidelines for classic LCIS. http://www.nccn.org/patients/guidelines/breast/#6...

From what I understand, PLCIS is usually considered more at risk because PILC is generally regarded as riskier than classic ILC.

Anonymous

piedpiper---I have LCIS  and a strong family history (mom had ILC);  even with that combined elevated risk, my doctors did not recommend PBMs, said it was a personal choice, but not medically necessary. (but mine is classic LCIS, not pleomorphic). 

Anne 

MelissaDallas

I want to add that our LCIS group here is probably not a very good representation of the general population who have been diagnosed with classic LCIS. For some reason most of the handful of us here who hang around have had prophy bmx, though I don't intend to. Frankly it scared the crap out of me when I first joined. It took a long time to discover that we have a skewed population and that the vast majority of women with just LCIS do not go on to develop cancer, and, in fact, a lot of doctors refuse to do bmx for it unless you have other problems.

Piedpiper

MelissaDallas, you make a very good point.  My doctor, after presenting my case to the review board, said it was not recommended to have radiation due to the very large clear margins with the lumpectomy.  Otherwise PLCIS is to be treated like high grade DCIS (lumpectomy followed by radiation).  We did discuss a prophy bmx and she asked a very good question.  "If you knew that having breast cancer wouldn't kill you, would you still want the prophy bmx?"  With that, I decided to move beyond this season of my life, and carry on.  I will be getting alternating MRIs and mammograms every six months and will take evista as well.  If I have a re-occurence, we will revisit whether to have a prophy bmx or not.  She also said that most women are very happy with their choice the first couple of years but when they begun to suffer the side effects (like contracture) and others, they wished they hadn't.  Worth considering.  Thank you everyone for your thoughts and comments.  All was considered and pondered over.  Piedpiper