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Any experiences of invasive pleomorphic lobular carcinoma?

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jumpstart
jumpstart Member Posts: 13

Hi all, I've just managed to get hold of a copy of my pathology report today and noticed it said I have 'invasive pleomorphic lobular carcinoma'. This was never explained to me by either my breast surgeon or oncologist, but seems very rare (less than 1% of breast cancers?) and some differing reports of it not having a great prognosis compared to regular ILC.

Just wondering if anyone else has this and what you have been told about it, what your treatment plan is, etc.

(editing to add have now been able to find some more historic threads on this, but if anyone has any further experiences to share that would be great

Thanks in advance.

Linda

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  • lillyishere
    lillyishere Member Posts: 776
    edited December 2020
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    Linda, I am sorry you are joining this club. In my experience, other than ILC, some other "junk" found after BMX was LOBULAR CARCINOMA IN SITU: Present -pleomorphic type, intermediate to high nuclear grade, associated with necrosis and calcifications. I think it is on the side where positive nodes were found. It sounds aggressive but I wasn't told so. The treatment plan for me is only letrozole and zometa. Are you planning to start any AI treatment? Did your MO said anything in particular for pleomorphic type?

  • jumpstart
    jumpstart Member Posts: 13
    edited December 2020
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    Thanks so much for the reply and for sharing! Neither my breast surgeon nor oncologist mentioned the pleomorphic aspect, I only noticed when I asked for a copy of my pathology report today - and was really surprised to see it and then find out how rare it is!

    I am currently doing chemo and will have radiation after, and then will start ovarian suppression and an AI. (I will also need a BMX at some point due to genetics results showing high risk of new breast cancers. I was only able to get genetic testing after initial lumpectomy - I live outside of the US, some of these things take a while to get moving here.)

  • lillyishere
    lillyishere Member Posts: 776
    edited December 2020
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    Since I asked for BMX, I was able to skip radiation however, I asked for chemo and I was told, in my case will cause more harm than good. I thought things moved slow here in USA. Took me almost 2 months from diagnoses to surgery and this because I was pushing to get the surgery ASAP. I am also over 90%ER+. Do you mind sharing what continent is your medical center?

  • kmo1975
    kmo1975 Member Posts: 3
    edited December 2020
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    Hi Linda,

    When starting this journey 3 years ago this month, I too searched this web-site and felt very alone with what seemed like a rare diagnosis

    I was diagnosed with Pleomorphic Invasive Lobular Carcinoma in Dec 2017. I had neoadjuvant endocrine therapy ( Arimidex). Lumpectomy in September 2018. Re-excision December 2018 for better margins for the PLCIS which was indicated from path report from 1st lumpectomy. Full breast radiation in April of 2019. I continue taking Arimidex for 5 years. After 5 years we will re-evaluate.

    Finding treatment information about pleomorphic invasive lobular and pleomorphic lobular carcinoma in situ was difficult as no one institution has many cases and published papers are not current. I had 2nd and 3rd opinions both here in Chicago where I live and in Boston at Dana Farber.

    I also had my pathology slides read by Loyola, Northwestern, Johns Hopkins, Dana Farber and a private company. It helped guide my treatment decisions. I did not have Chemotherapy as genetic testing and the mammaprint test indicated no potential benefit. Every case is different as each individuals pathology will be different, therefore our treatments will differ. Pathology should drive and guide treatment. Trust the process. I wish you peace in the days ahead. Bests, Kim



  • jumpstart
    jumpstart Member Posts: 13
    edited December 2020
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    Thanks so much for the replies.

    Lilly, I am in Europe. I had asked for oncotype /mammaprint testing to help inform treatment options and was told it wasn't necessary (I don't think it's routinely done here) and chemo would be needed as was node positive, grade 3 and I am fairly young. Also used an online predictive tool which showed benefit of chemo - but this didn't consider it was ILC

    I had really been hoping to avoid chemo, so would have liked to have been able to explore other options in more detail.

    Thanks so much for sharing your experiences, Kim -and how wonderful you were able to get so many informed opinions on your treatment options! Here's hoping there's some more research in years to come on this rare BC/ILC type.

    Just to check if either of you had any positive results for genetic variations?

    thanks again for the replies!

  • nash
    nash Member Posts: 146
    edited December 2020
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    Jumpstart, I have Stage IV pleomorphic ILC. You probably have already seen a lot of my posts if you did a site search, so I won’t reiterate here. But feel free to PM me if you gave specific questions.

  • jrnj
    jrnj Member Posts: 407
    edited December 2020
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    jumpstart, My "former" breast surgeon totally ignored it, and tried to tell me I was reading the pathology report wrong. My second MO opinion said no chemo. My third MO opinion at Sloan, #2 hospital in the US, said yes it's pleomorphic and it was a factor in saying yes to chemo, not the only factor. I had LVI and extranodal extension. My oncotype was 15. If it was below 12 she would have said no chemo. I think the grade 3 and pleomorphic go hand in hand, because regular ILC is usually a lower grade. I was very paranoid due to the positive nodes. However, they recommended a less toxic chemo, CMF, which is pretty rare in the US with most doing TC. I think you are making the right decision with 3 positive nodes and pleomorphic. But I think taxol is more popular in the US over taxotere. I hope it goes well for you.

  • lillyishere
    lillyishere Member Posts: 776
    edited December 2020
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    Ladies, I found hope:

    In conclusion, PLC is not an aggressive subtype of breast cancer as previously reported in the literature. Although they might have less ER and PR expression as compared to cILC, they have similar outcome in terms of disease-free and overall survival as compared to cILC.

    Clinical Outcome in Pleomorphic Lobular Carcinoma and Pleomorphic Lobular Carcinoma In-Situ

  • kmo1975
    kmo1975 Member Posts: 3
    edited December 2020
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    Linda,

    I had no genetic mutations, node negative and diagnosed at age 60.

    Kim


  • OnTarget
    OnTarget Member Posts: 124
    edited December 2020
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    JRNJ, I got my second opinion at MSK and they were ambivalent about me doing chemo, but said they'd recommend CMF. My MO wasn't in favor and we went with TC. It seems to be a bit of a crap shoot.

    I had pleomorphic features, but not grade 3. I was on the line for chemo and I went with it as the most aggressive treatment option.

  • jumpstart
    jumpstart Member Posts: 13
    edited December 2020
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    Thanks so much for the reply, nash - I will look through your posts and really appreciate being able to write if I have any questions.

    JNRJ - thank you so much for sharing your experiences.

    Lilly, thanks a lot for sharing that article - I hadn't seen that one!! that is really helpful and good to know about -and different from what I had seen elsewhere!

    Kim thanks for replying about the genetic factors and age upon presentation, etc.

    OnTarget thanks for sharing your chemo experience - that is really useful.

    Linda

  • jrnj
    jrnj Member Posts: 407
    edited December 2020
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    Hi On Target, Yes, I remember our previous conversations. My MSK dr. was not ambivalent, she said definitively yes, because of my 2 positive nodes, LVI, extranodal extension and ki67 being borderline. But my Rutgers opinion said no, treat with hormone therapy. I don't think they consider at all that some people can't tolerate hormone therapy.

  • cathmg45
    cathmg45 Member Posts: 5
    edited December 2020
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    Hi Jumpstart,

    I was diagnosed in 2008 with stage 2 PILC, no nodes. However, my oncologist said he wouldn't do the oncotype because it would probably show me in a grey area, and he recommended chemo because of the Pleomorphic aspect. I had a Bmx, and 4 rounds of taxotere and cytoxan. This is a rare variant, to be sure. I thank my lucky stars often that I am 12 years out. Wishing you all the best,

    Catherine

  • jumpstart
    jumpstart Member Posts: 13
    edited December 2020
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    Thanks so much for the reply Catherine and so great to hear you’re doing well :) That’s really useful to know about the oncotype/chemo consideration and seems consistent with the approach from my oncologist.

  • naps
    naps Member Posts: 27
    edited December 2020
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    Hello there,

    I was diagnosed with PILC in early 2016 at age 44. ER/PR neg, HER2+ initially, then TN on residual. I ended up getting 3 opinions--treatment recommendations were said to be made based on features/factors other than the histology. 2/3 recommended adjuvant chemo with AC after I had had neoadjuvant with TCHP. I also enrolled in a vaccine trial.

    I am continuing to do very well and feel incredibly fortunate. Good luck to all of you. Wishing you all the best!

  • BeingPresent100
    BeingPresent100 Member Posts: 8
    edited December 2020
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    Hi Linda- I was diagnosed with PILC in June 2019. I had a DMX in July 2019 as well as lymph node dissection. I had one sentinel node light up. My oncologist, at MSKCC, strongly recommended chemo because of the lymph node; PILC and size of my tumor(s). I did go through chemo and then radiation. I was freaked by the PILC- especially when I'd go to to Dr. Google. ;-) That said, my oncologist said PILC can mean more aggressive or it can mean just the shape of it. He told me to get off the googles as the latest white papers that Sloan has on PILC won't be out for another year or so.

    I'm now done with all active treatment and take Letrazole daily. Feel free to DM me if I can answer any further questions.


    Wishing you and all the women on this board a magical holiday season!


    --Tina

  • lillyishere
    lillyishere Member Posts: 776
    edited December 2020
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    naps, what type of vaccine trial did you participate? Any news how did it go?

  • jumpstart
    jumpstart Member Posts: 13
    edited December 2020
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    Naps thanks so much for sharing - and so glad to hear you continue to do well!

    Tina - that is really interesting to hear and sounds like good advice by your oncologist :) congrats on finishing active treatment!

  • naps
    naps Member Posts: 27
    edited March 2021
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    Hello again,

    Sorry for the delayed response! I participated in one of the Neuvax (nelipepimut-S) trials. I don't know the results yet, though I did find out I received the vaccine. There's been some indication from another trial that this vaccine may have benefit in the TN population, which suits me as that's what residual disease at surgery turned out to be.