Information on Mixed Lobular/Ductal

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gfrey
gfrey Member Posts: 43
edited April 2019 in Stage III Breast Cancer

I'm trying to find information/feedback on mixed lobular/ductal cancer. It's hard to find anything--even on this site I listed myself as IDC b/c there was no category for mixed. I found an old article that said people with mixed had a worse prognosis, but otherwise that's it. All my doctors have said it's not that unusual and it hasn't seemed to make any difference in my treatment.

Thanks to everyone who has shared and responsed to my other posts.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited November 2009

    I had mixed DCIS and Ductal, which I guess is not the same. My thinking is I had DCIS which turned into Ductal. Not really sure how it all works.....did you have two seperate tumors??

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  • LeeMcC
    LeeMcC Member Posts: 152
    edited November 2009

    Are you talking about LCIS (lobular carcinoma in-situ) mixed with DCIS (ductal carcinoma in-situ)? I was diagnosed in July with an extensive mix of both in right breast ... with a tiny (4mm) invasive, which had broken out of the duct.

    This is what I've learned: LCIS is controversial and most docs consider it NOT to be cancer (but it likes to hang out and be around cancer cells). DCIS is considered Stage 0 early cancer contained within the milk ducts. IDC is when the cancer has become invasive, or infiltrating, and broken out of the ducts (or when DCIS becomes Invasive Ductal Carcinoma).

    I think it's fairly common to have a mixture of LCIS and DCIS in the same area.

    Lee

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  • karen_in_nj
    karen_in_nj Member Posts: 59
    edited November 2009

    I've been reading this board for months but only just registered today. And when filling out the "diagnosis" part when registering I had to choose between Invasive Ductal and Invasive Lobular, I couldn't choose both. Like you, they found both kinds in my breast (which is now gone) but it hasn't seemed to make a difference in my treatment and my oncologist didn't seem to think it was such a big deal when I asked her about it. I know someone (a five year survivor) who also was stage 3 with mixed Ductal and Lobular.

    Karen 

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  • weesa
    weesa Member Posts: 707
    edited November 2009

    I was actually mixed ductal and lobular-I always refer to myself as "ductal invasive" because I had two lumpectomies for it and that is what my primary 5cm cancer was. When they didn't get clean margins they did a mastectomy and unexpectedly found the invasive lobular. My onc said it didn't make a difference, and he always refers to me as having ductal since it was very large and the lobular was small. I also had some DCIS and some LCIS!

    You know, always trust your instincts. I kept insisting at the beginning that I didn't want just a lumpectomy, I wanted a mastectomy. Fortunately they couldn't get clean margins with the two lumpectomies, otherwise the lobular might very well still be growing happily, since it did not appear in any mammograms or a sonogram (what else is new...) I never heard having mixed features compromised your survival. (Thank goodness I never heard that.) I want to hasten to add I am seven years out and healthy as a horse.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Karen  I had invasive ductal carcinoma with lobular features. 

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  • gfrey
    gfrey Member Posts: 43
    edited November 2009

    My core biopsy called it an invasive carcinoma with lobular and ductal features, so it didn't say it was one or the other specifically. It didn't change my treatment, but I've heard the lobular is a bit more difficult to measure on imaging devices. I don't know if that's true. It's good to hear that it's not associated with higher risk or anything. I know everyone on this site is aware of the anxiety that is provoked when something in a pathology report is "different" and then you can't find information on that "different" diagnosis. It sounds like a mixed carcincoma isn't enough of a concern to warrant a distinct set of information. Thanks for the responses everyone.

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  • cbm
    cbm Member Posts: 475
    edited November 2009

    I had "invasive mammary adenocarcinoma with mixed ductal and lobular features."  My oncologist (and the controversial Susan Love in her book) said it is not that unusual and it has no better or worse a prognosis.  My oncologist told me it's ductal, just has some lobular characteristics, like Shanagirl. 

    Warmest,

    Cathy

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    I had it all, IDC, ILC, DCIS, and LCIS/ADH.  Grade 3, as most with this pathology are.

    No node or vascular involvement.  All of my doctors are amazed by that, considering the amount of invasive cancer in my breast.

    I'm stage II because of no nodes but they do emphasize that I'm high risk for recurrance.  (Nothing was seen in my left breast on MRI so I only removed one).  I'd be interested to know just how much higher my risk might be but am not able to find statistics.

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  • Angel10
    Angel10 Member Posts: 682
    edited November 2009

    Hi gfrey!

    Coolbreeze and I are similar...I had invasive ductal, invasive tubulolobular (that's a mouthful!) DCIS, LCIS...grade 3.  I did have vascular invasion but no nodal involvement.  At first my onc wanted to do chemo but the Oncotype came back as 18 so he let me decide, and I said NO to chemo!  I has a BMX which was my way of saying NO to rads, as I knew my cancer was not up against the chest wall.  I am doing the tamoxifen....but may try going off it after the first of the year for a month because I am still feeling so tired and my BMX was in April...I would just like to see how I would feel w/o it.  My Oncotype score suggested an 18% reoccurrance rate w/o tamoxifen, 11% with it on board, so I am trying it.

    Good luck to all of us!

    God Bless!

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    Angel, being HER2+ means I have no choice but to do chemo.  And, I had close margins, even with mastectomy, so I might have to do rads too.  :( 

    I'm still counting my blessings that there were no nodes or vascular invasion - I should play the lottery!  :)

    None of those cancer survival calculators have mixed cancer input.  

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  • Angel10
    Angel10 Member Posts: 682
    edited November 2009

    Coolbreeze...Pooh on the HER2 status and the margins,too....sorry about that.  This whole thing is a mixed bag...saying a special prayer for you this evening...

    I have a subscription to the NY Lottery.  But I have had it for 20 years and only won $52 in all that time!  Am I nuts or what?? I just know once I stop playing my numbers will come in!  :)

    God Bless!

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  • gfrey
    gfrey Member Posts: 43
    edited November 2009

    Coolbreeze, you're also in my prayers with the HER2, but it's wonderful you had no + nodes. That is crazy you had all forms. I don't even understand how that happens, but as I said, fabulous that you had no nodes. Herceptin is a wonderful thing and it will help you. You're in my prayers.

     Angel10 tubulolobular is a mouthful! Wonderful about your good oncotype and no nodes. $52 is more than I've ever won playing anything, so I say go for it!

    Blessing to all....

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited November 2009

    I'm a little curious about "lobular features."  My core-needle biopsy report said IDC/ILC, so I began reading on both, but it did seem to regarded the same as far as the treatment goes.  Then, I had my lumpectomy and the final path. report did not mention ILC anywhere.  My final ended up being IDC, with minor associated DCIS of about 5%.  What happened to whatever the first pathologist thought looked like ILC?  Was he mistaken, not a good interpreter of what cells looked like, or what?  I would think that under a microscope a duct looks like a duct, a lobe looks like a lobe.  What we need is a PATHOLOGIST to post on here and break it down for us.

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  • Angel10
    Angel10 Member Posts: 682
    edited November 2009

    I agree Elimar...my first pathology said tubulobular, wiht ductal (both invasive) then I got invasive lobular and invasive ductal from the MX report...I lost the tubulo aspect....go figure!

    All I can say is that no one seemed to worry about it, so although I was...I just ended up letting it go!

    God Bless!

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    My completely uneducated guess is that because it had been about ten years between mammograms, DCIS grew to all this other stuff.  Don't know though.  I feel lucky no matter what!

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  • gfrey
    gfrey Member Posts: 43
    edited November 2009

    I think that's why it's good to have a lab where 2 pathologists sign off on the report--a way to have some verification. My pathologist friend say the one thing to remember is that the biopsy is just a snapshot of the tumor and there's the best way to really analyze it is when it's out. So, I'd focus more on the results after a MX or lumpectomy, rather than the biopsy.

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  • cherneski
    cherneski Member Posts: 726
    edited November 2009

    My tumors were 2.5cm IDC with lobular features, and .5cm ILC, then I had DCIS too, just not sure how big.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited November 2009

    Hmmmmmm....... I have never heard that a mixture of IDC and ILC had a worse prognosis....

    I find that there are a lot of woman that have it mixed and they are doing very well....

    I am 5 1/2 years out with large tumor...8CM....which was mixed with ILC and IDC.  I have a friend that had a 5 CM mixed also and she is over 8 years out......

    Hang in there.....

    Jacqueline

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  • Hattie
    Hattie Member Posts: 414
    edited November 2009

    I had cancer soup also--everything but no her2+.

    Flipped me out, but didn't actually change anything.

    four years out and fine.

    take care,

    --Hattie 

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  • 45andafighter
    45andafighter Member Posts: 3
    edited December 2017

    I have a mixed cancer as well, and I get the same responses...Had a mastectomy on the left with a 3.4cm mass removed...mixed with a over 40 Ki-67, no radiation and possible chemo....clean margins and no node infiltration

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    I had one idc and one ilc, I was told no difference in treatment too.

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  • wrmbrownie
    wrmbrownie Member Posts: 114
    edited January 2018

    My biopsy was IDC but after chemo, surgery biopsy said IDC and ILC. When I asked onc, he said not to worry because my ILC acts as if it were IDC. I don't know whether he said it or I read somewhere back then also that the treatments were the same. 

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  • beep7bop
    beep7bop Member Posts: 130
    edited April 2019

    I to have mixed in both breast which was a surprise to my doctors

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