Help please -how did it get this bad & don't know what to do.

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  • EWB
    EWB Member Posts: 2,927
    edited February 2009

    Hi Michele, just checking in to see how you're doing. Keeping you in my prayers.

    Elaine

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  • Rhonda1966
    Rhonda1966 Member Posts: 52
    edited February 2009

    Hey truegrit, I saw your post and noticed our stats are very similar. Just wondering how you are doing since your diagnosis of more than 4 years. I am almost 2 years out and I still have my up days and down days. I wonder if the thought of ILC ever leaves the back of your mind.

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  • michele54
    michele54 Member Posts: 152
    edited February 2009

    I'm just checking in to see how everyone is doing.  I've been off the boards and trying to keep things as normal as possible until I know exactly what I am dealing with. Went away with just the girls last weekend and we ate, drank, and had a good time.  Cancer, tests, and the fear of mets only popped into my head a couple of times.  They wouldn't let me dwell on anything and that was good.

    I'm scheduled to have the spot on my spine biopsied next Tuesday.  The doctor that is doing it is flying in from Paris that weekend.  He's a top radiologist/surgeon at Penn and spends his time between UPENN and a hospital in Paris. My primary's wife had bc two years ago and he is setting me up with all her doctors.  The waiting is still killing me but at least I know my team will be the best UPENN has to offer which I keep telling myself is worth the wait.  

    While we were waiting for my biopsy, my primary did my blood workup.  I am picking the exact results up tomorrow but he did tell me all the results including the CEA were normal which I think is good.  He did worry me by saying my CA 27-29 was high at 140 (50 being normal with no cancer).  Not sure what that tells us.  He didn't order a CA 15-3 but is adding it to the pre biopsy blood work they are drawing tomorrow.  If anyone has info on blood test results or know what their numbers were, I would love to hear it.

    So things on my end are still the same.  Hopefully next week at this time I will know exactly what I'm dealing with.  I'm keeping the faith and telling myself I believe things will be fine. 

    Hope everyone is doing well.

    Big hugs to all............................

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  • EWB
    EWB Member Posts: 2,927
    edited February 2009

    Michele,

    Good to hear from you. Glad to hear you had time away with the girls, thats always a good thing. Smart move to wait until you have all the pieces of the puzzle, sounds like you will be in good hands.

    My prayers are with you,

    Elaine

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  • momofbraj
    momofbraj Member Posts: 49
    edited March 2009

    Hi, recently diagnosed two weeks ago with ILC with mets.  Saw my gynecologist for lump under my arm in December and he told me it was just a cyst.  No changes in my breast at that time.  In February began to have shoulder pain radiating down my arm which I thought was from "cyst" pushing on my brachial plexus.  Trip to primary doctor and multitude of tests revealed ILC with mets to shoulder, ribs and hips.  My breast just became lumpy 4 weeks ago.  Unsure as to how this happened so quickly.  I was started on hormonal therapy (lupron, tamoxifen and zometa).  I am sort of nervous that I am not getting chemo but I am loving the quality of life that I have right now.  My kids don't seem to be as worried because life has continued on as usual.  How long before I should see results? My breast seems so big....

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  • nash
    nash Member Posts: 2,600
    edited March 2009

    Hi, momofb. Welcome to the boards. Sorry to hear about the mets right off the bat.

    Starting with hormonal therapy first is becoming the standard of care for ER/PR+ Stage IV girls--it makes sense to try all the HT before moving on to chemo.

    Marshakb from these boards is a ILC Stage IV girl who is trying Femara (which is a form of HT) for her mets. Her onc told her to give it three months to work.

    You might also want to post over on the Recurrence and Metastatic Disease Board to get some input from other Stage IV girls on HT.

    Glad you found us--you'll get great support here.

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  • HensonChi
    HensonChi Member Posts: 357
    edited March 2009

    Hi Momo,

    Sorry to hear about your diagnosis.  Did they ever remove the lump under your arm?  I had exactly the same thing...a huge lump under my arm and the doc told me it was a cat allergy (I don't have one) or an old fish tank (I don't have one).  So she went in and took it out and said oh no...it is cancer .....whoops.  Will they eventually do chemo? 

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  • momofbraj
    momofbraj Member Posts: 49
    edited March 2009

    They did remove one of the lymph nodes (the huge lump) during the biopsy.  I am meeting with my oncologist on Friday.  Chemo is definitely a possibility but if the hormonal therapy works well I may not need chemo or less later on.  I have been trying to stay away from soy products (which is very difficult) and of course discovered this morning that the vitamin e oil I am using to soften my biopsy scar is soy based.  So I am not ingesting soy but rubbing it all over my scar in the area of my breast.  Wasn't a very good morning.

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