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Invasive pleomorphic lobular carcinoma

Patti JPatti J Member Posts: 589
edited July 2019 in Social Groups
Does anyone have any up-to-date information on this type of invasive lobular carcinoma that is easy to understand?


  • LvlwLvlw Member Posts: 52
    Hi Patti, sorry I don't have any up-to-date info but wanted to say hello as I was diagnosed with pleomorphic lobular in Nov 2017. I've also found it difficult to find easily-digestible information about the sub-type. I did chat to my medical oncologist about this the other day as the pleomorphic aspect of my cancer has never really been addressed previously. She just said that it responded better to some types of treatments than ILC "proper" or "classic" does.

    sorry, not much help! Lxx 
  • berryberry Member Posts: 66
    I also have pleomorphic Patti and Lvlw, my oncologist said that its the most aggressive form of ILC. It's a problem if it has spread to the lymph nodes, which mine have and outcomes from treatment are poor.
  • SisterSister Adelaide Hills, SAMember Posts: 4,536
    I have/had pleomorphic as well and had spread to the nodes - I have been told that my outcome is good (of course, I don't really believe that but do accept it at the moment).  I must admit that I didn't pick up on that aspect of my bc until after treatment and it came as quite a shock - it's not mentioned in most of the things you read about deciphering your path report and my ki67 markers were really low.
  • LvlwLvlw Member Posts: 52
    it shows how complex ILC and its treatment is, doesn't it, that treatment outcomes may differ depending upon the stages etc. so good that its getting more focus for research. xx

  • jewel-eejewel-ee Member Posts: 59
    Hi @Sister I had/have ILC, no mention of pleomorphic, no node involvement and 5% ki67 result. I'm on Arimidex. My onc was also positive about my long term outcome  and I can only hope he is right. Glad this discussion category exists. Jxx
  • Deb_NDeb_N Member Posts: 1 New Member
    Hi ladies, I had/have ILC with pleomorphic changes, and spread to 14 lymph nodes. I was diagnosed almost exactly a year ago. There was no lump. I was diagnosed by Breastscreen on my routine mammogram. I've had a lumpectomy, axillary clearance, Chemotherapy (4x A/C + 12 x Taxol), radiotherapy (30 doses, 51 Gra) and am now on Arimidex. I was told that "pleomorphic" refers to the level of differentiation of the cells in the tumour. Basically means very rapid duplication. I am totally confused about my prognosis. My treating team seem upbeat, but I find that fear of metastases is ever present. But there is no plan to screen for them - my doctor says the outcome won't be any different if they are discovered on the basis of symptoms alone. And just now, 16 weeks after my chemo finished, my two middle finger nails and my big toe nails are lifting from their nail beds... oh, and Arimidex has fired up my carpal tunnel syndrome, so I now need surgery on both my wrists.... The gift that keeps on giving! 
  • SisterSister Adelaide Hills, SAMember Posts: 4,536
    Isn't it wonderful?!
  • Charlie2019Charlie2019 Member Posts: 16
    Hi ladies 

    I had both ILC classical type and ductal carcinoma 7 years ago and had a lumpectomy, radiation treatment and tamoxifen for 5 years. Unfortunately it came back this year picked up during my annual check up. and I have had a double mastectomy. This time it is ILC of "pleomorphic variant". I have just reread my pathology reports from last time and this year and am totally confused about what it all means as there is so much information that has not been properly explained to me.  I was emailed my pathology results and just given a summary of the type, that is ILC and hormone positive. I wish the Drs would take the time to explain the specifics of the pathology to patients as lack of understanding only increases my anxiety levels.
  • Patti JPatti J Member Posts: 589
    @Charlie2019. I cannot believe that your results were emailed to you. In my opinion, that is very slack. How do they know they were sent to the correct person? A doctor needs to explain the wording to you. Can you at least ask your G.P. ? 
    Write down a list of questions and take them with you to your next doctor's visit. We all need to know what our diagnoses mean.
  • Charlie2019Charlie2019 Member Posts: 16
    @PattiJ  I should clarify that my surgeon did ring and give me the results and then emailed but the phone call was just a summary.  I feel I should have asked him to go through them in detail. When I had the first diagnosis 7 years ago I had a lumpectomy and then had to go back and have more taken out because the margins were not clear.  I have looked back at my results and it looks like there was still lobular carcinoma in situ abutting the cavity margin after the second surgery it makes me wonder whether more should have been taken especially as the cancer has come back this year.  I am really lucky that it was picked up very early and not in my lymph nodes but I had to have a mastectomy. I will definitely be asking a lot of questions at my next appointment with oncologist. 
  • SisterSister Adelaide Hills, SAMember Posts: 4,536
    It is worth sitting down with a professional to go through the results.  There is a site that has been published on the main forum in the past that goes through the terminology but you'd have to do a search for it.  I missed the "pleomorphic" bit on my report for months - it was only at the end of active treatment that I was talking to my surgeon about the length of time the cancer had been there and he pointed out that as it was pleomorphic and so had probably only been there for 18 months to 2 years.  I still don't quite understand how that sits with a really low ki67 marker.
  • Charlie2019Charlie2019 Member Posts: 16
    Thanks @Sister I did find some explanation of the terminology on the website for the American Cancer Society. What I really realise now is that I really need to advocate for myself and insist on answers to all my questions rather than just accept what the drs tell me as the overriding message has been that it has been caught early and you will be fine.  I am lucky that it has been caught early both times but now that it has come back again I don't think I will ever lose the fear of it coming back again
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