Does Chemo work on ILC?

ShareTheLight
ShareTheLight Member Posts: 14
edited August 2018 in ILC (Invasive Lobular Carcinoma)

So...long story short, I'm only 40 and I just had a lumpectomy last Wed and SLNB and got results today. Happy to say lymph nodes are clear. Yaaaay! My margins however were not. Booo! The thing is that my surgeon said that it is now ILC. My initial dx was IDC so I'm a little confused. I didn't process anything she told me on the phone but she will happily go over it all again in person next week when we meet prior to my next surgery. From what I've been reading on here, I see one can have both ILC and IDC but does anyone know, can IDC actually transform into ILC or is it always a separate issue?

One of my biggest worries has been if I'll need chemo. Not knowing anything about ILC, I asked my surgeon if it now made me more likely to get chemo and she said it was quite the opposite explaining that lobular cancer doesn't respond well to chemo so there is very little chance that chemo would be an option but of course I still have yet to meet with MO. Nothing that I've researched online suggests that chemo does not work for ILC. I realize this is early in trying to get input since I'm not sure on the details of this new dx but perhaps your input could give me good questions to ask next week.

Thanks and sending positive thoughts to all! :)

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2017

    Interesting; chemo is recommended often for ILC,but it depends on more than just the initial dx--for example size, + nodes, etc. Just because it doesn't work as well at times on ILC doesn't mean it isn't ever recommended.

    I do not think IDC can "transform" to ILC. They are two separate subtypes of b.c. But initial pathology can sometimes be just a starting point with more detailed, correct info following. That might be what happened to you.

    Congrats on the neg. nodes, that would have made me very happy too! :)

    Claire in AZ

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  • Hokster
    Hokster Member Posts: 53
    edited January 2017

    I have ILC and despite an Oncotype test score of 13, chemo was recommended for me. My oncologist did say that recent studies have found that ILC doesn't respond well to chemo but given my positive lymph node, the tumour board felt it was best. This would not have been suggested if my lymph nodes were clear, so I will hope for the best for you.

    Take care

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  • Sam2U
    Sam2U Member Posts: 233
    edited January 2017

    I can't speak to the effectiveness of chemo on ILC, but I can to the change from IDC to ILC. It may be worthwhile for you to read your pathology report. My situation was similar in that my initial biopsy was diagnosed as IDC, the second biopsy was diagnosed as mixed with both types. The final pathology was all ILC and explained the change in type. In my case, the first two labs had diagnosed the wrong type due to the small sample size. Maybe that is what happened in your case?

    It is good that it hasn't moved to the nodes and hopefully after seeing your whole team you will have a better sense of the treatment path.

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  • ShareTheLight
    ShareTheLight Member Posts: 14
    edited January 2017

    Thx everyone for your valuable input! I sent a msg last night to my surgeon asking for the exact diagnosis and that I'll then wait for the whole explanation at my appt so hopefully I hear back today. Thx! :)

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  • Sim10
    Sim10 Member Posts: 2
    edited May 2018

    Hi there, I have been diagnosed with ILC in the right breast, and involvement with at least one lymph node, stage 3. I have 3 rounds of FEC, chemo did an ultrasound after the second, and it showed that the main tumor had increased 1 cm. My oncologist and surgeon didnt seem to worry because they said it could be, dead cells, odeama, showing! My oncology nurse, bless her said, she felt it was too premature to do an ultra sound to see if the tumor was shrinking after only the 2nd chemo when i have 6 rounds in total to go!.

    Hmm, so i then did a bit of research and found that because im HER negative, ER and HR Positive, my cancer responds better to the hormone tablets given after! The team felt the need to go through the whole protocol as there was lymph node involvement as well. I wish there was more written and verbal information that was more patient centred around this decision. It would be nice to be informed as well, as to what if it doesnt work, etc!!!!!

    Anyfeed back would be gratefully appreciated. Thanks in advance Simone

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  • SissyBeans
    SissyBeans Member Posts: 9
    edited August 2018

    Hi Claire!

    How are you doing?

    Well, had a mastectomy and am finally recovering... BUT it was in my sentinel node. I didn't have many cells there but had some! This is too scary and I WANT CHEMO! I NEED TO KNOW IT IS GONE! And not somewhere else sneaking around.... IS that too much to ask do you think?

    SissyBeans

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    Simone, can you get another independent opinion? ILC is typically lower grade and doesn't respond to chemo as well. It could be hormone therapy might be more effective. Some oncologists believe lymph node involvement automatically indicates chemo. Well they are backing off of lymph nodes being indication on advancement of the cancer, not always the case. Even no lymph node involvement doesn't mean cancer hasn't escaped the breast.

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