How many ILC'ers grade 2 turned into stage 4

melmcbee
melmcbee Member Posts: 1,119
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I hope this isnt a rude question. Please forgive me if it is. I read some of the stage 4 threads and I rarely see anyone there with ILC grade 2. I realize that there arent as many of us ILC'ers as women with IDC so I would expect the numbers to be low. I honestly dont think I have seen anyone on there with ILC except for grade 3. Thanks for any input. Hugs

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  • Gitane
    Gitane Member Posts: 1,885
    edited April 2013

    There are Stage 4 sisters with Grade 2 ILC.   ILC is less frequent so they are not seen as often as IDC.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2013

    I agree with Gitane.  I also think that the pathology grading is subjective to some degree and where one may grade something a 2, another may grade it a 3.  Alternatively, a 2 could be a 1 for some pathologists.  I have also seen grade 1s progress and I have continued reading some Grade 3s for years that have not progressed.

    Cancer is a crapshoot.  It is very hard not to read the statistics and try to extrapolate how each of us will evolve, but then, statistically, I should not be here.....

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  • lemon68
    lemon68 Member Posts: 684
    edited April 2013

    Hi

    My understanding from my BS is that the grade doesnt matter as much as size of tumor and the receptors ER PR HER2. Do these receptors make a big diffence in progression?

    Wallycat- Your DX shows Stage 1, are you still stage 1? And the arimidex is similiar to tamoxifen?

    Thanks, sorry for my ignorance.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2013

    Lemon68, I am still a stage 1 (as far as I know!).

    Arimidex is an aromatase inhibitor---blocks aromatase from converting to estrogen.

    Tamoxifen blocks estrogen receptors.  Sort of same principle but different pathways.

    I have also read that ILC is one where size of tumor does not play a role as much as it does in IDC.

    A lot of it is confusing; my mitosis rate was "0-1" which means it replicates slowly, but my oncotype score and grade were higher than I would have liked....so I am sort of not trying to look at the stats anymore and hope a cure is around the corner!

    April 20th will be 1 year off of meds, so I am hopeful it all continues to work.

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  • MMSS
    MMSS Member Posts: 103
    edited April 2013

    From what I have read the cancer community is in the midst of a changing paradigm where in stead of focusing on the size of tumor and the number of positive nodes they focus on the aggressiveness of the tumor. That makes sense as the more aggressive tumors tend to grow faster and move to the nodes sooner. However ILC seems to me to be a good research opprotunity to test this new paradigm because you rarely see people posting with high grade ILC tumors. Most are a 1 or 2. Also many of us have low KI-67 scores and low oncotype.

    I am a perfect case in point. I had a large tumor despite never missing a mammogram in over 30 years and it was also missed on ultrasound twice. No lump to feel either. But I had a grade 1, KI-67 of 2 and oncotype of 6. The only thing that makes any sense to me is that when I was young and stupid I had breast implants put in and in those days they put them over the chest muscle rather than under as they do today. I think that it started behind the implant and that is how such a non agressive tumor got in to the muscle. I while back a radiologist friend talked me in to having the implants removed so that I could get more accurate mammograms and I did. I probably owe my life to her  because had they remained in place I would probably be dead of lung mets by now. Once they came it probably found the breast tissue to be the more hospitable way to grow.

    On the one hand I can look at the stage 3 and panic but on the other hand I can look at the grade, the KI-67 and the oncotype and think that I have a reasonably good chance. The other plus is that it was 3+++ positive for both estrogen and progesterone in all the cells and it shrunk dramatically with neoadjuvent hormone therapy so I think I will sign on for the new paradigm. However I still think we would make a great group to study for the emerging paradigm but I guess there are so few of us that we are a lower priority for research dollars.

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  • Frapp
    Frapp Member Posts: 1,987
    edited April 2013

    I was stage 4 grade 2 at the start. It has since mutated to grade 3.

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  • lemon68
    lemon68 Member Posts: 684
    edited April 2013

    Hi Frapp,

    I am sorry for your DX of Stage IV. Was it undetected by mammos? My MO told me today I had a high risk of it in my good side due to it being ILC, high as in 35% chance. Did you have any in your other side?

    Thank you for sharing your information.

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  • Frapp
    Frapp Member Posts: 1,987
    edited April 2013

    I started having mamos at age 44. The doc kept saying that they saw extra breast tissue and that I should come back in 6 months. This happened several times and then my husband died unexpectedly. I decided to move the next state over to be near family and lost track of having the mamos every 6 months during this time. I was diagnosed at age 49 when I noticed my nipple inverted.



    I had a DMX just this past December 3 years after diagnosis due to pain the increase in size was causung. I insisted on having the "good one" removed for symmetry. The pathology report found 3mm of cancer on that breast also.

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  • lemon68
    lemon68 Member Posts: 684
    edited April 2013

    Thank you Frapp for the information. Sneaky bastard this ILC is, I may follow suite with you. It sounds like your decision was a very wise one, bless you.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    Lemon - I have thouight about this a lot and I have a different take on it - if I still have a breast ILC may well favour that rather than somewhere else harder to access or treat, as it likes breasts first.......just a thought.....

    xx

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  • lemon68
    lemon68 Member Posts: 684
    edited April 2013

    Lily- I have never thought of it that way. You may just be right, its something for me to think about. Thank you xo

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2013

    I can't tell you how many doctors told me it was a myth that ILC presents contralaterally.  I read, researched, and listened to my gut (which diagnosed me as no machine picked it up...you can read my posts, I will spare repeating myself).

    After much thought and contemplation, I decided on the bilateral mastectomy, mainly because I had very large breasts and the thought of having to wear something to match the EVEN BIGGER breast was unsettling. 

    As I am in the radiation area where they are putting in the dye to find my sentinal nodes, the radiation oncologist looked at me and said..."I am not allowed to say this and maybe this is old news, but I have seen too much of this...you made the right decision getting rid of them both.  You are a wise woman."

    I almost fell off my gurney.  WHY on earth are doctors not comfortable sharing THEIR perspective...it doesn't mean we have to listen, but it sure would be nice to add it to the information we are processing.

    As an aside....Frapp, I hope this is not too personal a question, but when you were initially dx, it sounds like you opted for lumpectomy...no?  and how did they determine stage 4 without suggesting a mastectomy?  and was the IDC found in the same breast or contrallaterally.  I could have been a new primary and not, as you posted, a "mutation" of the first cancer.  Not sure that is any more comfort...just that you and your doctors did do all they could from the outset.

    ILC is a sneakly one.  After the fact, my mammogram (started at 40), ultrasound, and manual palpation...all showed nothing...till the MRI.  Even then, the MRI looked non-cancerous. 

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  • Frapp
    Frapp Member Posts: 1,987
    edited April 2013

    When I was first diagnosed, I was found to be stage 4 at that time. There was no surgery because basically the horse had already left the barn so no need to try and shut the door now. Most docs will not go further with any surgery once stage 4 is determined. I had a DMX 3 years later due to the issue with the tumor causing severe pain and the size that itnwas getting to. I had to persuade my docs into taking both as they were not comfortable with removing what they thought was good tissue. However, I was not going to have reconstruction and I was a size DD and could not see myself with one DD. so for symmetry , I was able to talk them into taking both. After the surgery, the pathology on the "good" one showed I had a 3mm ILC in that one also. Knowing it was there would not have changed my treatment. I hope this answered your questions.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2013

    Thanks for your reply.

    I am not the smartest gal here, but I am horrified they would leave cancer in your body when surgery could limit further spread...but clearly I am not an oncologist.

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  • SuperFoob
    SuperFoob Member Posts: 505
    edited April 2013

    I am Stage IV from the start. ILC, grade 2. with Liver mets.



    I had a uni MX on the icky boob then a MX on the good boob 9 months later. I had biggun's (36DDD/F) and they were replaced with much more manageable 36D's.



    My surgical pathology on the bad boob showed 11cm ILC grade 2 and 1cm IDC grade 1. My biopsy showed only the ILC at 9cm.



    My good boob had no cancer.



    Everyone is different as is treatment. I was 44 at dx and my MO (and I agreed) decided to treat me "aggressively": hence the surgery. I wanted it out: forthwith!

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