Pleomorphic ILC

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  • nash
    nash Member Posts: 2,600
    edited September 2008

    Hi, thinkpositive. Sorry you had to join us, but glad you found our little PILC thread! The data on PILC is a tad depressing, but I've done a lot of reading and bending of ears of various docs, and I've got two points to share that I hope will help you. One, it is really unclear if ALL PILC is very aggressive, or just the PILC that is HER2 positive. The literature doesn't really make that distinction. Two, I've had several docs (the ones who pay attention to the PILC subtype--many of them don't) tell me that while PILC is more aggressive than ILC in general, it is no more aggressive than a garden variety grade 3 IDC. And the good news on high grade IDC is that it responds well to chemo.

    Make sure that they run Oncotype DX on your tumor--the score you get can potentially help with your treatment plan decision making, and it might put your mind at ease if the score is in the intermediate (as opposed to high) risk of recurrence range. I doubt it would be in the low range, since the tumor is grade 3 and PR-.

    Glad you got through surgery well. Don't worry about the PILC too much--your tumor is not that big, and the negative nodes are a good thing.  Keep us posted on what your onc says.

  • Gitane
    Gitane Member Posts: 1,885
    edited September 2008

    Hi there, think_positive.  I'll just pop in to let you know I'm another PILC person, too.  Nash has it covered; she's said what I would have said.  My onc did tell me that chemo works on pleomorphic ILC.  He recommended AC for me, and I had a very good response.  I know others are saying their doctors are avoiding adriamycin if they aren't Her2+, but I'm glad I had it and my tumor responded.  It will be interesting to see what your oncologist recommends.  The Oncotype test is really interesting, not only to see what your recurrence score is, but to get their measurement of the ER and PR. There aren't many of us PILCs.  I'm rooting for you.  Please keep in touch.  

  • think_positive
    think_positive Member Posts: 18
    edited September 2008

    Nash and Gitane -

    Thanks so much for your responses. 

    I went back and reread the online info for PILC with Her2 in mind and feel better now. (I was a wreck yesterday after reading the literature.) 

    I'm still waiting to hear when the oncologist can see me.  The surgeon did mention the possibility of radiation as well - puzzling because I had negative nodes and a mastectomy. 

     Again, thanks!

  • Gitane
    Gitane Member Posts: 1,885
    edited September 2008

    Rover,  Where are you?  Have the treatments got you down?  If you can please post,  I'm worried.  Hope all is going O.K.  

  • Rovergirl
    Rovergirl Member Posts: 194
    edited October 2008

    Still here ..... just going through my weekly infusions.  Just completed AC #5 - 10 more to go.  So far my only SE has been nausea but that seems to be getting better. 

  • Rovergirl
    Rovergirl Member Posts: 194
    edited October 2008

    Just checking in ...... Had a mid-treatment MRI last week.  Disappointing results - no additional shrinkage - the tumor is stable - no increase or decrease in size.  It's just the overachiever in me this is the first MRI were I haven't had a decrease in size.  Although after my taxol regimen by tumor had shrunk 90% in volume so I'm not sure what I was expecting.   Other than that I'm still just ticking off the weeks ..... only 8 more to go.....so far have found AC to be tolerable now that the nausea issue has been resolved.  It's all good.

    Rover

  • nash
    nash Member Posts: 2,600
    edited October 2008

    Glad you're feeling ok, Rover, everything considered. A 90% reduction on the Taxol is great--maybe the AC will kick in after a few more doses.

  • dianaon
    dianaon Member Posts: 31
    edited October 2008

    Thank you for the info. we are of like minds. I am a nurse practitioner x 24 years who dared to ride the roller coaster of pathology journal articles on PLC (pleomorphic lobular Ca). And until I see my surgeon (from MSK) I prefer to read survivor stories. (..just got bx report 1 wk go).woops- the hubby woke up, time to either drug him or do something else to get him to sleep- read my profile- just wrote it. maybe I too, am delirious from lack of sleep, or all the love and prayers coming my way.

  • cjh
    cjh Member Posts: 78
    edited October 2008

    Welcome Dianaon,

    Just read your profile...

    I am a recent newbie to this site and also PLC and turn 52 on election day. I was dx in July 08 and so well remember reading those reports of "lethal"...and getting ill.  This site has helped me a lot to keep things in perspective as I try to learn more about the PLC variant.  I keep looking for newer research on this variant, in the meantime I signed up for clinical trial E5103 which is suppose to be one of the newer and more aggressive appoaches to locally advance bc, but again there is no info on it's impact on PLC?  Hoping for positive news for you on Thursday!!

    Please share anything you learn from MSK and I will continue to probe the staff at Mayo here in Rochester.

  • dianaon
    dianaon Member Posts: 31
    edited October 2008

    thank u. I just sent a personal to think positive. My path is 90%ER+, 50%pr+, and 0 HER2. The path journals say even though the stains show +, the cell type is not so responsive...The sono size was 2.5x1.9, again, may be wildly larger, as grows irregularly. I faxed my ins. cards with a letter to the surgeon asking her if she wanted an MRI (I wasn't going to do anything the asshole radiologist told me), and when my gyn suggested an MRI too, I called her office to confirm she got the letter and did NOT want me to get an MRI..i swear if she orders an MRI on Thurs, i will go somewhere else. I can already see she is very busy, and that's good, but I also need someone accessible (if only thru their staff) that I can count on not to cost me time and aggravation.

    i am so scared.

  • Gitane
    Gitane Member Posts: 1,885
    edited October 2008

    cjh and dianaon,  I'll just pop in and say Hi.  I hope you will come here often and share. Having PILC makes us kind of special, doesn't it?  You are being treated at the very top places by the best doctors.  We could all learn from you, I'm sure.  This is a scary road, at least it was for me.  It helped me to come here and talk to others.  Hoping for positive news for both of you.

  • Gitane
    Gitane Member Posts: 1,885
    edited October 2008

    Rovergirl,  Thank you so much for checking in.  I don't want to be a nag, but I am pleased to get any news.  I'm glad the nausea is under control now.  90% reduction is pretty darn good.  I don't know how much more the AC will add to that, but even if it doesn't show in the breast it is undoubtedly working if there are any micromets to kill.  It is the very best chemo combination, I think.  8 more weeks.... wow.  Keep up your strength, get sleep, and try not to let bc take over totally.  Thinking of you and keeping my fingers crossed. Hugs.

  • nash
    nash Member Posts: 2,600
    edited October 2008

    Diana, when you have a chance, can you post a link to the citation that talks about PILC not being responsive to HT even when highly ER+? I hadn't read that before, and I'd be interested in seeing the path journal, My onc seems to think my PILC will respond to Tamoxifen even though I'm only moderately ER/PR+, but she also doesn't pay any attention to the ILC subtype--just looks at receptor status in general.

  • Rovergirl
    Rovergirl Member Posts: 194
    edited November 2008

    Saw my oncol. yesterday and discussed the latest MRI results. Since there is already a 90% reduction he suspects there may be dead or scar tissue left that the MRI may be showing.  In his words "it's hard to kill something that's already dead."  Or the cancer cells may not be growing fast enough for the chemo to kill them and local control will take care of it.  Doesn't recommend any adjustments in treatment.  Guess I need to adjust my expectations, there might not be much left to reduce.  I'll have another MRI in 3 weeks.

    Rover 

  • mattscot
    mattscot Member Posts: 69
    edited November 2008
    I am newly diagnosed...   I live in NJ--  49 -  pleomorphic invasive lobolar 2.5 cm  grade 2 no nodes with classic and pleomorphic lobular  surrounding in full quadrant of left breast.  I had aurgery on 10/20 (masect. with reconstruction) .  Although the core biopsy had  found classic lobular the pathology from the surgery I am er + Pr+ and may be HER2 + (waiting for the FISH test to come back) I am noticing that my case had my surgeon and the MRI radiologist confused they had been certain that was dcis and idc....   I also just found out Fri that I am BRACa pos (my mom is a 30 year breast cancer survivor -- we dont know what type because back then they would not tell you (my genetitic counselor who I would like to strangle has not provided the report or told me 1 or 2 -- my apt with her is after thanksgiving because of her part time schedule --  believe me I will follow up on Monday -- cause that is not acceptable. I have found  a recent art that links pleomorphic lobular with braca 2 mutuation... So I am now scheduling oncology visits -- researching like mad .  This board has been so helpful to me in the past few weeks --   shell
     
     
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    shell - Sorry you are joining us - but yes, this board will be very helpful. It's great that you had no positive nodes. That is very good news for you. ILC is rarely triple positive. If the her2 comes back positive, you may want to have the pathology reviewed at an additional lab...kind of like a second opinion. What made your drs think you had dcis and idc? Hang in there...good luck with your research and scheduling.

  • Gitane
    Gitane Member Posts: 1,885
    edited November 2008

    Rovergirl,  90% is amazing.  You may even have 100% reduction as your onc says.  I have great hopes.  Thanks for keeping us informed.  I have you in my thoughts and will be checking on you.  Hugs.

  • Gitane
    Gitane Member Posts: 1,885
    edited November 2008

    Mattscot,  You have come to a very exclusive club here as you probably know by now if you're "researching like mad".  No doubt, you've read some of the posts, so know a bit about all of us already.  We are ready to help you any way we can.  BTW, you live near my daughter who lives in MA.  We were just out there and it's beautiful.  You are node negative, a very good thing.   You are through the surgery now and healing.   Take very good care of yourself, lots of rest, lots of deep breaths, as the emotions tend to be all over the place.  Once you have more information, you can start dealing.  Unfortunately, the information gathering takes time.  At least here on the west coast it seemed that way to me.  Let us know how the follow up goes with the genetic counselor, the results of the path report, and FISH and how things went with the onc.  All critical parts of the process.  You will find some very helpful people here on this board.    

  • mattscot
    mattscot Member Posts: 69
    edited November 2008

    thanks for the replies....  I am not completley trusting of my pathology yet and plan on getting second opinions (I have been told oncologists redo pathology)  I have heard of Dr. Sherman (John Hopkins right) where you can send in the slides and have them reviewed.   As background my surgeon only thin needled my tumour (which showed it was adenocarcinoma-- ) then sent me for an MRI in which they focused on the 5cm lesion around the tumour which was cored biopised (they did not core biopsy the tumour. )  I was in that machine for like two hours and they did not core biopsy the tumour.... I was livid

     When I went for my second opinon I had them core biopsy the tumour which came back as classic lobulur , er+ pr+ and her-   I --am assuming the pathology after surgery is more correct  but I feel some of it is subjective.  

    By the way the drs thought I had dcis  because of the high level of calcifications in the lesions... 

     Take care

  • think_positive
    think_positive Member Posts: 18
    edited November 2008

    Hi Ladies,

    I finally got my oncotype dx results (it's a long story) and I have a 15% chance of recurrence.  The Dr. didn't have the score with her when she called, but said she thinks it's 24, solidly in the grey area.  She says I will see a 4 to 7% reduction with chemo so that's what I'm going to do.  She seems in a hurry to start - it's been so long since surgery (Sept. 4th mastectomy) and it may be as soon as Friday.  I will meet with her and then start the chemo that same day.  I have no idea what she will choose for treatment.   I'm very nervous and it's hard to gear up this fast after waiting so long for news.  Any advice for helping me cope?  It's gonna be a long winter!

  • Gitane
    Gitane Member Posts: 1,885
    edited November 2008

    Hi think_positive.  All the very best to you as you begin your treatment tomorrow.  My oncotype result was 23,  15% chance.  I also had chemo, but I had AC.  It was the same time of year, too, in 2005.  Sooner you start, sooner it's over.  Let us know how you are doing.  I'd say, from my own experience, be sure to take very good care of yourself and don't try to do too much.  That's not easy over the holidays.  I'd also say, once chemo is over, give your body some time to recover before you dive into any hormone therapy.   Finally, I'd say try to take each day as it comes.  It's hard to know from one to the next how you will feel.  Keep the oncology team in the loop so they can give you just the right meds.  Don't hesitate to call if you need some help or have questions, that's why they're there for you.  Come here to chat, too.  Big hugs as you begin this next step.

  • thankfulrn
    thankfulrn Member Posts: 4
    edited November 2008

    I am pleo ILC stage iib with a tumor 2+ cm and 2 nodes positive,.Had quadranytecomy - finished, adrimyacin, cytoxan and taxol followed by 35 radiation tx. Now on arimidex. Dx. 3/2007. Am 52 yrs old. Will have an MRI at my insistence, due to discomfort and heaviness of affected breast. I'm sure it's nothing!!??  Good luck to you!

  • think_positive
    think_positive Member Posts: 18
    edited November 2008

    Thanks for the encouragement.  I started chemo on Wednesday - TCx4, 3 weeks apart.(1 down, 3 to go.)  Unfortunately I will be needing a port.  I had been hoping to avoid this, but suspected it would be neccesary.  I'm just taking it easy and other than feeling a bit tired, I'm doing OK.  I got a copy of my oncotype dx report - the good news is that I'm PR +, just barely, but this is different than what the hospital lab found.  This will help with response to tamoxifen, right?

    thankfulrn - Hope all turns out well.  It is probably nothing - but the test will put your mind at rest.

  • DanaLu
    DanaLu Member Posts: 9
    edited November 2008
    Think positive, having a port isn't so bad. You need a safe site to access a large vein for your chemo. If you didn't, the drugs could scar your veins. I had mine in for 5 months until I had my surgery (mastectomy) in April. Didn't cause any problems and was not noticeable to anyone but me. I'lll be thinking of you next Wednesday. Write back, like to know how things went for you.
  • Lory75234
    Lory75234 Member Posts: 8
    edited November 2008

    Your post is inspiring and I thank you for coming back.  I am struggling about the decision to do chemo or not. Onco DX 23. I am 47 and want to come back and post in 45 years and say I am doing GREAT!

  • Lory75234
    Lory75234 Member Posts: 8
    edited November 2008

    I didn't fill out the DX correctly. It should show up now

  • mattscot
    mattscot Member Posts: 69
    edited November 2008

    Hi Lory...

    Was your Oncologist able to give you any feedback why your  score was 23 ... I say this because your DX looks on the mild side grade 1, size of tumor no nodes.  Did you call Genomic Health ---  I found them to be helpful -- Based on their scoring .. you could definately just do hormonal therapy  -- what was your oncologists feedback??  get the second opinion.   

    for me I just got an onoctype back as 16 with a determinaiton of Her2-  --- This was a big surprise (I had expected a much larger score) The Her result is inconsistant with a prior FISH test that found me to be slightly HER2+... Anyway a pretty nice low score but because of the inconsistancy I will be doing chemo... (Taxotere, cytoxin and Herceptin every 3weeks  4x and Herceptin for the rest of the year)

  • Gitane
    Gitane Member Posts: 1,885
    edited November 2008

    I was just sitting here reading through our Pleomorphic posts tonight when it hit me how many newbies are here.  I hope I got the names and dates right. Did I?

    dianaon dx 7/08 

    mattscot dx 9/08

    think_positive dx 9/08

    chj dx 10/08 

    I'm so sorry that this is happening.  I see that some of you are consulting with MSK and Mayo and I learn by reading everyone's posts.  It looks like different treatments are being recommended.  This type of BC is so rare, yet here we all are.  I take heart that you are coming here because I feel that those of us who share this diagnosis can help each other.   Not only that, this is a good place to come to talk. I'm 3 years out from diagnosis, and I still need to talk about it.  Go figure.  All the best to everyone here. Thanks for coming, and please come often.

  • mattscot
    mattscot Member Posts: 69
    edited November 2008

    Gitane

    From my recent consultations -- both doctors (Sloan and St Barnabus) seemed less concerned about the Pleomorphic status... except for my LCIS which was of pleomorphic variety... the view is that type of LCIS is definately not a precancer . My Her2 issue definately took center stage as well as the other characteristics of the tumor   ER+... the grade..    the size taken into account... but because of the irregular shape they expect the size to be larger

     I have also read that Pleomorphic lobular may be more similar to IDC than classical lobular...

    I have found  a recent journal article (from Austraila can copy if you wish ... that links BRCA 2 with pleomorphic lobular invasive  --- since I am also BRCA 2 that really struck me...  I think Lobular is getting much more common..Pleomorphic is still unusual...

  • mattscot
    mattscot Member Posts: 69
    edited November 2008

     Here is a copy of that article I mentioned above... I apologize that I cut off the title and citation when I had copied for my files ....  I can find it if you wish...

    Lobular Carcinoma
    Invasive lobular carcinoma (ILC) is the second most commonly diagnosed histological type, comprising approximately 10-15% of all breast cancers. We have studied the molecular genetic profiles of ILC using microarray comparative genomic hybridisation (aCGH) and have identified genomic amplifications of 8p12-p11.2 (FGFR1) and 11q13 (CCND1) which are likely to be important in tumour development. We have also shown that the high grade, poor prognosis variant pleomorphic lobular carcinoma (PLC) has a similar aCGH profile to ILC with additional amplification of oncogenes such as ERBB2 (17q12) and c-MYC (8q24). The majority of ILC also exhibit loss or reduced E-cadherin expression and this is likely to be associated with the characteristic discohesive growth pattern of these tumours. Some diagnostic pathologists are now using E-cadherin positive staining to discount a diagnosis of ILC in favour of invasive ductal carcinoma (IDC). ILC and IDC have notable differences in their biology and clinical nature and so this has implications in the management strategy for a patient. We have demonstrated that ILCs with mutations in E-Cadherin can occasionally express the protein and we are currently studying cases of ILC morphology and mixed E-cadherin immunoreactivity to understand the role of E-cadherin in the biology of lobular lesions and evaluate the limitations of its use in clinical practice. Our lab is also extending these studies into lobular carcinoma arising within families with a hereditary predisposition.. There is strong evidence that lobular carcinoma in situ (LCIS) and ILC are associated with an inherited predisposition. They are both frequently multifocal and bilateral, a feature seen in many familial disorders, and a higher rates of ILC is found in familial BRCAx mutation carriers compared to sporadic controls. We are using the kConFab resource to study this association in high risk families. PLC may be part of the BRCA2 spectrum of tumours and we see molecular evidence to support this with loss of the BRCA2 genomic region by aCGH. We plan to study kConFab breast tumours to investigate the role of BRCA2 in this ILC variant.

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