Had bilat mastectomy with TE's..now what ???

ganzgirl2010
ganzgirl2010 Member Posts: 235
edited September 2014 in ILC (Invasive Lobular Carcinoma)

I had my dmx on 8/20 and tissue expanders placed during surgery. My lymph node was clean which is great news but now Im in limbo again. I know they are testing the rest of all the breast tissue and they will be doing the onco test. From what I understand, if this score is 20 or below then chemo would not be of benefit. Im obviously praying for a low score but I also cant help wondering what else can be done to be assured that everything has been done to prevent a recurrence. That's not comforting enough for me. I had a pretty sizable "tumor" at 5cm. I am so afraid of it being in another part of my body and it just hasn't been picked up yet. Does anyone has go thru what Im going thru or am I going crazy. I worry excessively in general but this consumes me some days. I hate fucking cancer !! Sorry had to get that out

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  • rozem
    rozem Member Posts: 1,375
    edited August 2014

    ganzgirl - you will have more information as soon as they do the tumor pathology.  They will tell you the grade/type of cancer right away and possibly an oncotype test and this will determine your treatment.  Not to scare you but with a 5cm tumor it is likely,unless you are grade 1 and very low oncotype , to require chemo.  You will feel much better once you know what you are dealing with, have a plan of action and move forward with treatment.  This part is the worst, hang in there!

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  • Momine
    Momine Member Posts: 7,859
    edited August 2014

    Ganz, welcome first of all. Since your node was clean, it is unlikely that the cancer has spread somewhere else. Clean nodes are great. Try to take it one step at a time, and confine your worry to the immediate hurdles. Easier said than done, but it helps.

    Other than chemo, they can give you hormone therapy if your cancer is ER+. Hormone treatment is very effective and good at keeping the cancer from coming back. 

    You can also help yourself by getting some exercise. Even if you just walk for 30 minutes a day, it will make a difference, both to your immediate well-being and in stifling the cancer.

    Let us know what you find out from the path report and oncotype test.

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  • vbishop
    vbishop Member Posts: 616
    edited August 2014

    Sorry you are here, but happy you found us.  I lurked for weeks before I "showed" myself.  

    For what its worth, my follow-up treatment is minimal.  I see my oncologist every six months for blood work.  Basically waiting for the other shoe to drop.  My oncotype test came back at 9, so I have a low risk of recurrence. 

    The ONLY thing I can do to be pro-active is excise, eat healthy,  and get plenty of rest.  I am trying to stay away from diet sodas (any soda or pop is bad for you - aids in creating an acidic environment in your body and cancer LOVES acidic environments).  I am also trying to wean myself off of the white foods .... sugar, flour, white rice, potatoes, pasta, etc.  I am working on creating a more alkaline environment in my body.  I understand there is a balance, so I need to read more before I do more harm than good.  

    Here's hoping the other shoe stays put :)  

    Hugs to you!  Let us know how you are doing.  Further treatment is dependent on the final pathology report and the oncotype results.  Fingers crossed for good results!

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  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited August 2014

    Thank you for the replies ladies. I hate waiting ! lol

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  • Annette_U
    Annette_U Member Posts: 111
    edited September 2014

    Well, I had over 6 cm of ILC, grade 1 and no nodes. I still got FEC Chemo and 7 Taxol's. I also had rads so I'd ask Doc about your fears . Maybe they can do a bone scan or CT/PET scan to look for anything else. I did not have Oncotype but my KI-67 was a 62 which may have been enough reason for the chemo. Relax… you will get it figured out.

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