ILC Tumor Size

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Comments

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Butterfly, I had no choice about chemo, since I had positive nodes and stage III. 

    Chemo does suck and I can see how it is a real dilemma in your case whether to go for it. I think that in your shoes and knowing what I know now, I would probably skip it, but I would do the BMX and take the AI. I would also consider an ooph. 

  • Sian65
    Sian65 Member Posts: 99
    edited June 2012

    You also want to know if you have Luminal A or Luminal B subtype - my onc regards the subtype as much more important than the ILC or IDC categorisation.  These molecular classifications are the ones many oncs are now using to inform treatment options.  I'm ILC Luminal B ugh!

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2012

    What is a luminal B subtype?

  • Sian65
    Sian65 Member Posts: 99
    edited June 2012

    It is a molecular subtype - do a quick search online of "Luminal B" "breast cancer"

  • Kayne
    Kayne Member Posts: 103
    edited June 2012

    I had ILC 8 cm tumor that only showed as 5 cm on MRI. I did chemo and rads and now on tamoxifen. Question-- my onc did not do oncotype scoring on my tumor. Did everyone's do that?

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    I don't think mine did the oncotype test. Most likely because chemo was a given. I should ask though.

  • Sian65
    Sian65 Member Posts: 99
    edited June 2012

    Kayne: the molecular subtype is not taken from oncotype scoring - it is done on ER/PR/HER; nothing to do with tumor size or ILC/IDC. 

     Look at Komen's website: http://ww5.komen.org/BreastCancer/SubtypesofBreastCancer.html

     ER+/PR+/HER2-is usually Luminal A ..... good news!!

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2012

    I had the test done. I came back in the dreaded gray area. I agree you should ask for it. For me unfotunatly it just left me with more questions than answers because it says I am PR- but the biopsy and the path report a surgery both say PR+ and my Dr's don't really know why or at least that's what I'm being told.

  • Sian65
    Sian65 Member Posts: 99
    edited June 2012

    The tests depend on the % of receptivity and different people use different %cutoffs to determine positivity. 

    Negative does not mean you have a minus score it means not positive (as in 0% - 100%: where 0% means that no cells have hormone receptors and so is completely not positive = negative)

  • toomuch
    toomuch Member Posts: 901
    edited June 2012

    Sian65 - Do you know what test your MO ordered in order to have your tumor tested for Luminal A/B? I asked my MO about it, after I  had already completed my treatment and he brushed me off. I'd still like to know.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2012

    I wish I knew that as well. I would love to know if I'm a or b. If it's the rate of K-67 then what is the break off point? If it is 13.5 which was what I think I read then I'm really close with a 13.

  • nowords
    nowords Member Posts: 423
    edited June 2012

    I was told by a team of Drs. at the Mayo that chemo had a 1% chance of doing much...I had, what the MRI showed, as an 8.5cm mass.(Digital unltrasound showed it at 2.5cm.) I was 50 at diagnosis and figured lets throw everything at it. After 4 dose dense AC treatments I had a right mx. Pathology showed no effect on cancer from chemo; positive nodes with extra-nodal extension and one node was 1cm..... PET was clear,  I had 30 rad treatments. I don't know if the chemo had an effect on cells in the bloodstream.The mass removed was 10 plus cms. I am a bit over three years out from diagnosis and so far so good....I have had DIEP recon and that helped my lymphedema.

  • Sian65
    Sian65 Member Posts: 99
    edited June 2012

    Hi Toomuch and Kira.... As far as I know the absolute minimum cut-off is 14% K-67 for a tumor to be Luminal B but some research takes the cut-off as high as 30%.  I don't know what test my onc ordered if any - he is a researcher also and so he does all kind of things and I am in all kinds of trials/research projects!!! 

    Tumors with high K-67 have high proliferation (K-67 is the test for proliferation) -therefore - as far as I understand it ... a tumor that is <5cm, of low grade and/or with small amount of nodes and is ER+ (ie not triple negative) is really unlikely to have a high proliferation. and would thus be Luminal A.

  • toomuch
    toomuch Member Posts: 901
    edited June 2012

    Sian - Thanks for your quick response. Unfortunately, neither of my 2 pathology reports indicate the Ki67%. In know that it is used in calculating the oncotype but it's not reported out in that report either. Sigh. 

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2012

    Sian, Thanks for the info, so then I guess I would be luminal A with a K-67 of 13%. It is so hard to figure all this out, and I am 2 years out and still trying. With that being said I still want to know all I can, I guess that's the teacher coming out in me!

  • Butterflylady2012
    Butterflylady2012 Member Posts: 187
    edited June 2012

    Thanks Momine for your feedback.  Sorry you had do go through the Chemo.  I'm sure it did suck.  Leaning towards No Chemo, but yes it is a tough decision.  2% seems so small.  My Onc even said that it if was 5% reduction, he'd be pushing for it more.  My boyfriends afraid the Chemo will be too hard on me, I have kinda of sensitive system with meds and just reaction to things.  Wish I could have had BMX initially, but will be having left side removed in very near future.  And sorry...what do Al and Ooph stand for?  How are you feeling now?  Thx again...

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2012

    Butterflylady, A'sl means estrogen reducing meds and ooph means getting meds to stop your periods.

  • Butterflylady2012
    Butterflylady2012 Member Posts: 187
    edited June 2012

    Thanks Kira!  I think I need a book of all of these acronyms, or maybe just start writing them down.  :)

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Butterfly, in my case the ooph means oophorectomy, i.e. having my ovaries out. I had most of the uterus out too, because it had massive fibroids. 

    Some women with ER+ cancer have the ovaries out instead of going on tamox. I had them out so that I could go on an aromatase inhibitor (AI) instead of the tamox. I also had them out because there is a family history of both uterine and ovarian cancer, my cancer is lobular and lobular likes ovaries too. 

    I am 6 months out from chemo and 3 months out from the ooph. I feel pretty good, hair is back and I am working again and stuff. I am going in next week to get my lungs checked, but that is most likely some after effect of the rads and not serious (I hope). 

  • delphi
    delphi Member Posts: 13
    edited June 2012

    Dianarose that was alot to go through and so frustrating you had to wait so long to get it sorted out the second time and dealing with your sick Dad too, how stressful.



    Momine, I did not realize that having your ovaries removed could be an option instead of tamoxifen, I am on it only 5 days and it is already affecting my sleep patterns.

    Butterfly, Regarding the oncotype dx questions, I believe it is an expensive test and only used on those with small tumors. In addition, I was told by my doctors that they know hormone therapy works more than they know chemotherapy does, so he was not letting me off the hook with that one. those percentages mentioned seem very small to go through all that.

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    MCM, it depends on your stage. For some women an onc will be happy with just the ooph. For me, I had it so I could go on an AI instead of tamox. AIs are no walk in the park either, but the SEs tend to be a bit less severe. I was close to menopause anyway, and I had some other issues that made the ooph a good idea as well.

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