ILC/SNB

lola12
lola12 Member Posts: 127
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi I was diagnosed with ILC er/pr pos, her2 neg, brca neg 1.4 cm bc. I go for lumpectomy and SNB next week. I was wondering in anyone knew the stats concerning ILC and positive SNB. My docs reports say the nodes feel fine, they look good on MRI/ultrasound, but I am so fearful it will be positive. Am I being unrealistic?

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited September 2010

    Lola

    I don't know stats--- but I wanted to reach out--- I think you sound like things are fine-- my doc told me before my lumpectomy that she was 85%sure it was not in my nodes, and she was right..... don't know if there are stats about that..... but it looks like you have good stats--- hormonal positive so there are drugs, her2-  and brca neg..... 

    it is hard, but try not to worry about something that is not there.... after the surgery she can tell you about the nodes, so you will know soon enough.  There are lots of women who had positive nodes and are just fine.... hopefully you will be negative.... deep breaths.....

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited September 2010

    Lola: I was HER2+ve and my ILC was 11mm. Even with the nasty agressive HER2 factor thrown in my nodes were clear. So there is a good chance yours are too given the small tumour. Be grateful it has been discovered at this size. ILC is often not found until much bigger as it often doesn't show up on mammos. I've been through chemo, rads and continue with herceptin and I look back and thank my lucky stars it was found so early.

    Sue

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  • SeasideMemories
    SeasideMemories Member Posts: 3,194
    edited September 2010

    Hi Lola,

    It is quite normal to be scared at the possibility of having positive nodes!  You are at the scariest time right now in that you have only part of the picture of what's going on and sometimes the mind tends to fill in the missing pieces with the worst case scenario!  Once you get the whole picture of what you are dealing with and get your treatment plan together, it will get a bit easier.

    Not sure on the statistics but can share my stats.  Hopefully some of the ladies here who know FAR more about this that I do will be along soon.

    I had a fairly large tumor (2.5 cm) and had no positive nodes.  The nodes also looked OK on mammo, US and MRI which is a good indication that they are negative but, the only way to know for sure is to remove them and have a look. 

    My oncologist was leaning toward chemo based on my age and tumor size but ordered the Oncotype test I think more to appease me than anything else.  He was pretty sure I was going to come back either high risk or intermediate risk.  Well it came back as low risk.  He said chemo or not was up to me and he would be comfortable either way but that chemo would really only help me 1-2%, if that.  I chose no chemo.  I know there are many that would choose to do it for ANY percent improvement but, to ME, it wasn't worth it.  You will find throughout this journey, that it is all a very individual thing and no two peoples situations are the same.

    So far the results that you have received are all very favorable. Wishing the best for you!

    Noticed you are in the Albany area.  I have a sister in Schenectady and a brother in Slingerlands.  Small world!

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    Both the MRI and the physical exam indicated my nodes would be fine. I was told that if both the MRI & physical exam indicates no involvement then there is a 70% chance that is correct for IDC but…

    in my case I had a large, (5.5cm) aggressive, fast growing, grade 3, HER2+ tumor. In that case according to cancermath.net my changes of nodal involvement was like 80%. Guess what no nodes involved!

    I think in your case you have an excellent chance of no node involvement.

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  • Rbaston0912
    Rbaston0912 Member Posts: 5
    edited September 2010

    Hi Lola,

     The feeling of fear is normal but don't let it ruin your hope.

    Cheers!

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  • JennyB100104
    JennyB100104 Member Posts: 237
    edited September 2010

    Your stats are exactly mine. I had no positive nodes. But...remember, even if you do have positive nodes, the chances of recovery are very good. Hang in there, I remember how hard this part is.

    hugs,

    Jenny

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  • TokyoSing
    TokyoSing Member Posts: 140
    edited September 2010

    Hi, I was also diagnosed with ILC in Feb, 2010.  My tumour was bigger - 2.2 cm. but node negative as you can see in my stats. Make sure you get the tumour Oncotype DX'ed.  They now will take specimen from patients with up to 3 positive nodes.  That says something, dosen't it? The diagnosis is still early breast cancer - even with 3 nodes involved. My oncotype score, with a fairly large tumour,and stage 2 was low:  14. So no chemo.

    ILC is generally considered more slow growing, less agressive.  Hang in there. We have been down this road before and you are not alone.

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  • dianaon
    dianaon Member Posts: 31
    edited August 2013
    Diagnosed 10/08 with a 2.6 cm ILC (and a nearby in situ)- so I had a mastectomy not a lumpectomy. It DID feel like two harder than usual cysts. the MRI was strongly suggestive for neg nodes , and 2 were neg. My oncotype was 18, and I chose just Tamox, rather than be randomized in the MemoriaL Sloan Ket. "Tailor Trial" into 2 groups: 50% Tamox only vs. CMF followed by Tamox (to see if there is any benefit to chemo with this early stage Dx).  Think positive; or NEGATIVE in your case. Wink
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  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    Hi I was diagnosed in June with a.5cm ILC. I had a lumpectomy. The MRI showed no lumpnode involment. At time of the lumpectomy had the SNB done which showed no node involvement. I agree with  the others have the Oncotype DX test done. Mine was 24, which is in the gray area.

    Good luck hope for negative nodes.

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  • geek
    geek Member Posts: 14
    edited October 2010

    Hello,

    I do not know the stats.  But my mom was told that the nodes felt fine.  When she had SNB, they found cancer, but not in any of the other nodes after an auxillary node dissection.  

    Love

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