Pleomorphic ILC
Comments
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Mattscot--did I read your post right that Sloan and St. B both said that pleomorphic LCIS is not a presursor to invasive? I ask b/c my surgeon, who trained at MDA, and tumor board flip-flopped around a lot on that subject. My PILC was surrounded by PLCIS, so I have a hard time believing that my PLCIS didn't progress to PILC.
Thanks also for the citation. I'd also read that PILC is often BRCA2. What's sort of interesting is that on paper, I look like I should be BRCA+, probably BRCA2, but the testing came back negative. The onc said I probably have a BRCA mutation that hasn't been identified yet, and that I will have to continue to be tested as developments are made in that area.
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Let me back up ---both oncologists were less focused on the pleomorphic status . as to making a determination for treatment or a determination on reaccurance... My Dr at ST B. told me pleomorphic LCIS is not a precancer and probably is a precursor to invasive. that is different from classic LCIS considered to be a precancer and supposedly will not develop to invasive
I have read that there are other BRCA genes but just not discovered yet... sounds right
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I was tested for BRCA 1 and 2 and found to be negative. I had DCIS (solid) and PILC. I read that PLCIS is found in premenopausal patients where DCIS is more common in postmenopausal patients with PILC. I was 57 years old at diagnosis so postmenopausal. My tumor was diploid, does that mean anything related to any of this? What about having low levels of hormone receptors? Are these things common in PILC?
mattscot, thank you for sharing that study. It was very interesting to me; I'd never seen it before. I was very happy to see your Oncotype DX score was 16. I had thought that Her2+ status meant a high recurrence score, but you have proven that is not true.
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Hi Gitane
I will look at the theory you mention above on premenopausal and postmenopausul.. but we are already blowing that out of the water.. I am 49 postmenapausal for almost 2 years (which really pissed me off at the time because I was too young ---- I have also never had a symptom of menopause such as hot flash...) I have not seen anything linking levels of hormore recepters diopoid status and PILC...
My oncotype score of 16 was pretty low because in part this test determined that I am Her- I think I have been borderline all along....I am posting all overplace so borderline Her+ people requests this test. At this point I trust the Oncotype over the Fish but I am going to do the chemo
I enclose a copy of another recent article which is looking to see if PLC is a variant of ILC or high grade Idc that lost its E-cadherin. It also refers to the aggressiveness of PLC... but then cites the molecular alterations found in PLC that you would more commonly see in high grade IDC causing this.... Not all PLC has those molecular alterations noted ex Her2 positive...
"Pleomorphic lobular carcinomas (PLC) of the breast display histological features associated with classic invasive lobular carcinoma (ILC), yet they also exhibit more conspicuous nuclear atypia and pleomorphism, and an aggressive clinical behaviour. From a breast cancer progression perspective, it is unclear whether PLC is a variant of ILC or is a high-grade invasive ductal carcinoma (IDC) that has lost E-cadherin. The molecular features of 26 PLC were studied using immunohistochemistry [oestrogen receptor (ER), progesterone receptor (PR), HER2, p53 and E-cadherin], 0.9 Mb resolution, microarray-based comparative genomic hybridization (aCGH), fluorescent (FISH) and chromogenic (CISH) in situ hybridization and loss of heterozygosity. Comparative analysis was performed with aCGH data from PLC with classic ILC (16 cases) and high grade IDC (35 cases). PLCs were frequently ER- and PR-positive, E-cadherin-negative and occasionally HER2-and p53-positive. Recurrent copy number changes identified by aCGH included gains on 1q, 8q, 11q, 12q, 16p and 17q and losses on 8p, 11q, 13q, 16q and Xq. Highly recurrent 1q+ (100% of cases), 16p+ (93%), 11q- (53%) and 16q- (93%) and evidence of the der(1;16)/der(16)t(1;16) rearrangement, as detected by FISH, suggested that PLC had a 'lobular genotype'. Focal amplifications were evident at 8p12-p11, 8q24, 11q13.1-q14.1, 12q14,17q12 and 20q13. Loss of BRCA2 was detected in 40% of PLC by LOH. Comparative analysis of aCGH data suggested the molecular features of PLC (ER/PR-positive, E-cad herin-negative, 1q(+), 11q(-), 16p(+) and 16q(-)) were more closely related to those of ILC than IDC, implicating an overlapping developmental pathway for these lobular tumour types. Molecular alterations found in PLC that are more typical of high-grade IDC than ILC (p53 and HER2 positivity, 8q(+), 17q24-q25(+), 13q(-) and amplification of 8q24, 12q14, 17q12 and 20q13) are likely to drive the high-grade and more aggressive biology of PLC. Copyright (C) 2008 Pathological Society of Great Britain and Ireland. Published by John Wiley & Sons, Ltd."
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I am so confused. I am starting TC x4 on Tuesday. oncologists said I have to choose. to di chemo or not. They don't know whats best for Oncotype 23. I did the research and think my odds go up 5 % to 91% chance it won't come back. The Surgeon says he was there he saw the slide, whatever I choose I will be fine. The oncologist #1 said try the TailorX study.But Oncotype Says maybe chemo is best. Do I leave the decision to a computer?
Oncologist# 2 says chemo will be good. I am a perfect candidate for TailorX.
I keep second guessing my choice. my nurse prac. says I need psych consult. I think I need a xanax and I wanna wake up from my nightmare.
I know I will be OK but my head is spinning. Did you start TC? Are you doing well?
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Yup I carry the zanex with me where ever I go... during my early diagnosis stage I also had fainting spells when being delivered particulally crappy news... (great! now they want to check me out for siezure disorder....) But it does get better... and for me it gets better because of this board and the time I have spent researching...
So.. go online and search TailorX -- it is an ongoing study for early stage ER+ node negative Her- cases per the study due to your Oncotype score you will be randomly assigned chemo or hormone therapy only. They have assigned you with chemo -- TC x 4 The study will be helping others in the future as to deciding course of treatment.
If it helps you -- even thoough you are at stage 1, grade 1 at first blush it seems chemo is overkill ... but you are at a high -- low end as far as your score on the Oncotype. I would probably do the chemo too in your shoes.
I start TC x4 (with Herceptin) every 3 weeks next week on Friday. I have heard it is not so bad.
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Thanks for being here. I start on Tuesday and unless I chicken out I will let you know how it goes. I can't tell you how much courage this takes. I hope I Have it in me. I have three young kids and I need to be around a long time. The more I read on survival and how well we can do, the more I have hope and that leads to courage.
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http://www.molbiolcell.org/cgi/content/full/15/6/2523
mattscot,
I thought you would find the above gene study interesting. It's not that new, 2004, but it does address the difference between typical ILCs and ductal-like ILCs. Here's a quote that kind of sums it up,
"Our data strongly suggest that over half of ILCs (called the typical ILCs) differ from IDCs not only in histological and clinical features but also in global transcription programs. The remaining ILCs (called the ductal-like ILCs) closely resemble IDCs in their transcription patterns. The finding of two subsets of ILCs has important clinical implications about targeted therapies. Further studies would be required to explore whether the ductal-like ILCs should be treated similarly to other IDCs of their particular molecular phenotype (basal-like, luminal A or B, and ERBB2 expressing), and if different and type-specific treatment may be indicated for the typical ILCs. A larger cohort of samples is being analyzed to confirm the existence of different molecular subtypes of ILCs. "
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Lory, I don't know if you check back here, or not, but I thought I'd just say good luck with what ever you decided to do. Chemo or not. Let us know if you're O.K.
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Hi, everybody. Feeling better- got 60cc OUT of the expander last week, and the spasms are much better. Working 11 hour days (door to door).
Got my oncotype (18). The MSK Onc. (who I fired after the first visit) had initially tried to bully me into AC-T; then when I demanded the oncotype, she oferred the Tailor trial (<11 only Tamox vs. 11-25 random assignment to Tamox only or Tamox following CMP, and >25 gets AC-T).
So. I am making the rational choice of Tamox only. (the hell with the random assignment).
Finally got another Onco appt. for Jan.16. (Saw the first one 12/11.... things move slow in MSK land) I just hope this one treats me like a thinking human being, and does not get huffy and defensive if (WHEN) I ask questions. Would it be too much to expect I would be treated as a felow professional, being an NP for 25 years, annd been the coordinator of Gyn Onc at a major NYC hosp a decade ago? I'm trying to let go of my frustration with the whole institution and move on.
Been looking at sites, including the last teleconf. I got a list of drugs that are metabolized by the same (liver enzyme) pathway as Tamox, and they have worked for me, but I plan to be tested for the enzyme to be sure. I also plan to take it with Selenium, as there appears to be a synergistic effect, and less resistance over time.
Thank you all so much esp- Nash, Gittane, Kleenex, Seabee, Doeface, Mattscot-...etc etc- I could never get through this w/o you all.
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diananon, Going to MSK land for another opinion on Jan. 16 is interesting. Have you made your Tamox. decision, or are you going to get an opinion and then decide? If you can squeeze any info about PILC out of an MSK onc please share, because there isn't a PleoPal out here who won't be reading it. It bothers me that oncologists have decades of experience in practice, yet won't share anything about what they've learned with patients because it isn't research based, only anecdotal. It is so frustrating because the research isn't there.
Genomic Health says the median for PILC is 19, I think, so you're below that. Did the oncotype ER/PR/Her2 levels agree with your IHC levels?
Get lots of sleep, take very good care of yourself. HUGS.
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PleoPal--I love it, Gitane!
Diana--you and I are PleoPal twins--my oncotype was 18, too. And my tumor was only .1 cm bigger than yours. My ER/PR was lower, though--50%ish. So we're more like fraternal twins. Anyhoo, I too will be interested in what MSK has to say. And you're welcome--I'm so glad we all have each other for support.
I just switched oncs myself--love, love, love the new one, but she, too, brushes off the pleomorphic part of things. Didn't even bat an eye about my remaining pleomorphic LCIS, which had thrown my surgeon all into a tizzy.
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Hi Nashand all the pleo-pals, I too am a pleo and am awaiting my oncodx results which are due Feb 5. Dr. Barbara P. is thinking AC for me, if the score indicates...and I do trust her so much but the risks of A really scare me. I have been reading all the posts about the taxotere and taxol being better for my diagnosis and I am just so confused. I am 60 yrs. old and my mother had ductal breast cancer at age 70. My frustration is over the 5 months since I first found the lump, and yes it was very sensitive to pressure. After failed needle aspirations, successfulm core biopsies(7 cores) and then lumpectomy....I must have cells in my bloodstream. I dream of this at night as the months tick away . If my onco dx indicates, and dr.BP., I will begin chemo FEB 9. I too will be regularly checking in on this thread for all the posts and news. I am so comforted to be in such good and loving company. Off to my tylenol pm. warmly, mimis
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Hi MimiS, Sounds like you have been through a lot already. 5 months seems like quite a wait. Hopefully your Oncotype DX will be ready soon. Please keep in touch and let us know how we can help. Hugs from another PleoPal, G
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Hi Guys- been busy working. 11 hour days door to door. (and good thing- husband's company crashed last week). In answer to your questions, Nash- I decided on the TAM only, prior to seeing the 2nd Onc. I knew that given the 18, I was a candidate for the Tailor trial -middle group (1/2 take CMF + TAM, the other 1/2 TAM only). The MSK Pathology was ER 95/ PR 65 w/ modeerate intensity stain; the ONCOTYPE PCR was ER95/PR95.
I've been stretching it out big time, and the first fill last Mon, was so easy, I'm doing a 2nd tomorrow instead of every 2 weeks (like I planned because I was afraid of more pain.) What I found out recently was that the range of motion was not going to come back when they switch out the expander; that I would have to work for every mm of movement.
AND, that it is actually less painful to do that, than to avoid it and keep having the pain hit me when I move wrong- that Twanging pain was bringing me to my knees a few times a day, and really exhausting. 
Now that I realize I needed to stretch more (and have done so) I feel great. Can give BIG- over the shoulder HUGS,...and was my other armpit....it's the little things in life 
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Diana, glad you checked in. Sounds like you're doing remarkably well post-op--as long as you can give hugs, then all is well!
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The pleomorphic thread has been pretty sleepy, yet I see lots of questions about pleomorphic lobular on other threads in ILC and elsewhere. As it is a topic that is near and dear to me, I thought I'd update with what I know so far.
Grading: It seems that ILC tends to be Grade 2 for the vast majority of us. If you look at how grading on lobular is done (and some institutions don't grade lobular), because we all have a 3 for tubule formation, anyone who has some nuclear pleomorphism (nuclear grade 2 or 3) will have a Grade 2 tumor even with a very low mitotic rate. Consequently what constitutes "pleomorphic lobular" as a type of BC that is different from ILC in the mind of the pathologist may be the nuclear pleomorphism. If so, a tumor would need to have a nuclear score of 1 to not be pleomorphic.
Other Markers: Some of the ancient, small, gloom-and-doom studies trying to establish pleomorphic lobular as a separate sub-type of lobular used other markers. GCDFP-15 (indicating it's an apocrine type tumor), Her-2+, high mitotic rate, negative hormone receptors, are some that I've seen. These small studies did get pleomorphic lobular listed in WHO as an ILC subtype, but pathologists generally don't use these markers in deciding if your ILC is pleomorphic and are inconsistent in deciding when to use the word pleomorphic to indicate a subtype. They fudge and say "with features of pleomorphic lobular carcinoma" which means WHAT in terms of treatment and prognosis? That is the question people can't seem to answer.
What our oncologists are saying: If you read people's posts about what pleomorphic lobular means, you will find that oncologists don't find it as important as other things in deciding on treatment and discussing prognosis. (other things being T-size, nodes, hormone receptors, Her2) .
Genetics: The OncotypeDx median RS for pleomorphic is 19, I think. This is not greatly different from other kinds of BC, but there is a lot we don't know about how scores fall out on either side of this median. I read an interesting study out of Stanford. They have genetically divided ILC tumors into "classical" and "other" and seem to feel that about half of ILC cases fall into each category. Pleomorphic falls within the "other" category. They are finding that the "other" type of ILC is more prevalent than they thought, but isn't always obviously pleomorphic on pathology, so not so easy to identify without gene testing.
If you have any information of insights into pleomorphic lobular, or lobular in general I'd love to read what you've found.
Good luck to all of my "pleo pals",
Gitane
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is this type of Cancer common in young women ???
My mother had it when she was 32 ................She is a 26 year surviourAny links between this type of cancer and BRCA 1 AND OR 2 ????
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I have not read anything saying it is linked in any way to BRCA 1 or 2, nor that it is more prevalent in younger patients. I was tested for BRCAs and found negative. How wonderful that she is healthy. Boy do I love reading that!
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I came across this guideline for grading lobular carcinoma from the Provincial Health Services Authority, British Columbia, Canada.
It says, "In general, it is possible to grade lobular carcinoma. Usually, classical lobular will attain a score of 5, (tubules 3; nuclei 1; mitosis 1) giving the tumor an overall grade 1. Although some of the data are somewhat inconclusive, histological variants of lobular carcinoma are thought to differ in their degree of aggressiveness as follows:
1) Good Prognosis (Grade 1):- Tubulolobular carcinoma. This variant features tubular structures that are lined by very uniform small cells resembling those of classical lobular carcinoma. Single-file strands of identical cells are also present. Some authorities would regard this variant as a ductal carcinoma (tubular type).
2) Fairly good Prognosis (Grade 1): (marginally better than that of ductal carcinoma NOS.) Classical lobular carcinoma.
Criteria include:
a) Small uniform cells; grade 1 nuclei
b) Single-file rows in a fibrous stroma.
c) Targetoid (concentric, "bull's-eye") pattern around pre-existing ducts.3) Intermediate prognosis (Grade 2):
- Classical pattern with Grade 2 nuclei.
- Alveolar variant - round and oval nests of uniform small cells.
- Large cell variant
- Mixed patterns of lobular carcinoma.4) Poor prognosis patterns (Grade 3):
- Solid variant - large sheets of uniform small cells with round nuclei.
- Pleomorphic lobular carcinoma - pattern resembles classical lobular carcinoma but the nuclei are grade 2-3, mitoses are easily identified, apocrine change is common, and ER is negative.
- Signet-ring cell variant (>20% of cells should be signet-ring type)"Provincial Health Services Authority, British Columbia, Canada, 2009
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I remember I saw somewhere on web about definding PILC or not being based on nuclear pleomorphism, and I also remembered somebody mentioned it in this forum (can't remember the user name), but is it the most updated? Seems grading ILC is not as easy as IDC
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You're right, QAnna, grading ILC is tough, and there are even labs out there that won't grade it (I think Sloan Kettering is one of them), and professional papers arguing the merits of grading ILC. Definately a complex issue.
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For those of you who are into research studies, I thought I'd post this:
http://www.ncbi.nlm.nih.gov/pubmed/17653904
It is an open access article, so you can click on the link there to read the whole thing. It was published in 2007; I hadn't read it before. It is a Danish study where they pulled the slides of ILC patients ending up with 860 patients to study. Their slides were all re-graded and re-classified by one pathologist. (quite a job!) Be warned these women did not get chemo from what I can understand, and I don't know what endocrine therapy either. There are informative tables and graphs.
DCIS, which I had, was rarely found in pure ILC, which I had. (about 13% of cases) I wonder how rare it was in pleomorphic. They don't say. LCIS was more common in pure ILC (about 68% of cases) Most DCIS cases were in tumors where ILC was mixed with ductal and these had more vascular invasion.
About 18% of the cases they studied were multi-focal.
Subtype tumors were not more likely to be big or be node positive, but those that were node positive tended to have more positive nodes than classical. Subtype tumors (except for tubulo-lobular) were more likely to be grade 3 than classical. These tended to be the pleomorphic or solid variants.
The terms they used in the study can be confusing. My explanation (which I will share because it took me some time to figure this out as I read) may make it more confusing, so you may want to skip the rest and read the article yourself. Here goes...
PURE: meant a tumor that was composed of all the same cells in that it was totally classical lobular (701 cases) or totally one of the 6 lobular subtypes, they also called these subtype tumors non-classical (116 cases) Among these subtypes there were 39 pure pleomorphic lobular cases (34% of the pure non-classical subtype tumors). Other pure subtypes were solid, 20 cases, tubulo-lobular, 12 cases, signet-ring cell, 4 cases, alveolar, 7 cases, and a "mixed subtype" which they used to mean the tumor was all the same (therefore PURE) in that it was all non-classical subtype tumor cells but was a mixture of more than one subtype, 33 cases. You can see how this gets confusing.
ILC/non-ILC : meant that the ILC was NOT PURE because it has something besides ILC mixed into it, in almost all cases IDC. There were classical ILC/non-ILC, 113 cases, and then the non-classical subtypes: pleomorphic/non-ILC,10 cases, "mixed subtype" ILC/non-ILC,11 cases, solid, tubulo, alveolar in 1, 1, and 3 cases.
If you take the time to read this article, I would love to know what you think about it.
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Snicklefritz,
Thank you for your positive post. We all need that. It's hard some days not to go into a full on panic.
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Hi,
Just read your post today and hoping all is well with you a year later. I too read the reports of PLC prognosis and wonder what lies ahead for us. I finished 4AC followed by 4 Taxotere in Feb. Completed 33 Rad in April and started Tamoxifen April 1st. Went through some SE but things seem to be pretty good right now. I'm finding it hard to get back to normal life though. I feel ok but just don't have much ambition. I didn't miss much work all through surgery, recovery and treatments and still go to work everyday but when I'm home I feel in a rutt. I wondered if your treatments went as well as mine did and how you feel now. Did you do any genetic testing? I did the BRCA 1 and 2 and were negative. I am awaiting my results for the CDH1 test any day now. My mom died at 41 of stomach cancer and it seems that there could be some connection to my PILC. Again, hoping all is well with you and others.
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Hi javmo3, Welcome to our exclusive little club. My chemo was very hard on me, mostly fatigue, and nausea. I couldn't have worked, so you did better than I did. I had SNB and bilat mast. with saline implant reconstruction. The surgeries were really not that bad. I'm BRCA 1 and 2 negative. I had AC and am on Femara. The Femara continues to cause joint/muscle pain, fatigue, and low mood. I'm still not motivated to do things like I did before diagnosis. I think that's part of our adjustment process as well as a side effect of the treatments. "feel in a rut" describes it well. I am adjusting though, slowly. It takes time, physically and emotionally to recover. I am very happy that I have not had a recurrence. That is the most important, isn't it? I hope you will come here to the ILC forum to share your experiences. We are such a rare type, it helps to connect. HUGS! G
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Hi Pleo Ladies
Do you have room for 1 more in the club?
I had just moved over to the ILC section from the LCIS thread. I thought my diagnosis was ILC and PLCIS. I just received my pathology reports yesterday, and apparently this is where I should be, as it is PILC and PLCIS. I suppose at least I have consistently stayed on the lobular side of things.
It was of some comfort to read through this thread and to see that there are actually quite of few of us here. The little bit of information that I had been able to find about PILC, was not very encouraging.
I would be very interested in hearing of any new information anybody may have and or if they have found any more recent studies about PILC. This is all so scary. Although the two areas of PILC that they found in my lumpectomy, surrounded by PLCIS, was very small, I couldn't help but think that since this is thought to be agressive, it would be found in alot of the nodes. That doesn't appear to be the case, from the other women here, there seemed to be alot with 0-1 nodes. That sounds encouraging, I think?
Cathy
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Cathy, Welcome! (although I'm sure you'd rather not be here) If you've read through these posts, you know that there isn't much PILC research at all, and what there is really isn't that helpful. Personally, I have learned more on this site than in reading research. It seems that like other kinds of BC PILC is heterogeneous. Your stats look very, very good. You should be very hopeful, I think!
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Thanks for the welcome Gitane.
You are absolutely right, I would rather not be here, even though there seem to be such fabulous women here.
So far a couple of things I have learned about breast cancer;you join clubs that you really don't want to join and I appear to be climbing the lobular breast cancer ladder, when I would much rather be climbing a corporate ladder. The sequence of events for me since March 2009 have been - ALH, LCIS,PLCIS,ILC,PILC.
From the little bit that I have read, I thought my stats do seem good, I think. But of course right now I am very anxious to have the sentinel node biopsy done, to see if it has gone into the nodes.
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formykids, I know waiting to January to get this settled is really dragging it out for you. You have been dealing with this since July? However, at least you aren't in the thick of it during the holidays. I sure hope that SNB shows negative nodes. I can't believe it would be otherwise with such a small invasive component. Isn't it the pits that we become breast cancer experts?
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