ILC Stage III women

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  • MandaLynn
    MandaLynn Member Posts: 73
    edited March 2009

    Hi, I am stage III ILC  in the middle of chemo and can't get my mind off the fact that I did my surgery first.  I didn't know that neo-adjuvant was an option when I started all this.  I am getting AC and Taxol (and possible Avastin on the clinical trial E5103).  It's nice to see that some people had their ILC shrink with AC and Taxol (I feel bad that I'll never know if it worked).  Did any of you recieve neo-adjuvant chemo that was different?

     Susanlo (from Germany) - what chemo did you get?

     Do any of you know any names of doctors who specialize in lobular from MD Anderson?  I noticed someone in this thread (or somewhere else on the lobular) who got Taxol and Taxotere.  Do any of you know anything about that?

    Thanks! 

    I am really glad to talk to people who are exactly in my position.

    I am 44, it seems so wierd to get a cancer that usually strikes much older women. 

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  • MandaLynn
    MandaLynn Member Posts: 73
    edited March 2009

    Thanks Sherri,

     I'll check into Christofanelli.  I'm a real "lurker" on these boards and have read a lot of your postings.  I appreciate your encouragement.

     Amanda 

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  • PeggyDixon
    PeggyDixon Member Posts: 125
    edited March 2009

    Hi MandaLynn,

    Just wanted to echo what Sherri said about being sorry you are here but if you have to be, this is the best place for info and support. I am like you in that I didn't have neo-adjuvant therapy.  I wouldn't have known what it was at the time and everything was so fast - I was diagnosed and into surgery within a few days....like a truck had hit me in the side of the head.lol

    I also wanted to say that Sherri is absolutely wonderful. She put up with all my questions and freaking out when I was diagnosed - over 3 years ago now and doing well. Ask anything and someone here will know the answer. Everyone is amazing. Good luck to you and lots of hugs.

    Peggy

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  • Maire67
    Maire67 Member Posts: 768
    edited July 2010

    .

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited March 2009

    Hi,

        I have posted here before on this forum with questions of concern of my friend. She was diagnoised with both Lobular and Invasive Duct. She has now found out that she tested positive in the sentinel lymphnodes. It gets worse she was just biopsied on the other breast same thing! Not sure on the lymphnodes yet she has to go in for a small surgery for that one cause its in a hard place on top of a artery. My question which she asked me is why are they wanting to do 8 rounds of A/C and 8 rounds of T before surgery. The reason she is questioning it is she had contacted a surgeon in Boston regarding Masactomy/ Reconstruction with a diep. Which they don't in Maine. I do know and tried to explain that her type of cancer does not always respond well with chemo, and they want to make sure that its working.She is scared that if she gets all the chemo first than what if they leave some cancer cells. Maine usually follows the protacol that Boston is doing. But she is really concerned now!! I told her to go for a second opinion in Boston and then go with her gut!!! Which would be better for her. Do you have any answers that I can give her??? I would appreciate any help. I just feel so bad for her things just keep getting worse.

                                                       Sincerely,

                                                         Bridget

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited March 2009

    Thanks Sherri,

      I do understand that they do chemo before surgery, they considered doing chemo before mine but decided too do surgery first. I am just wondering why my friend is getting two diffrence of opinion when we follow the East Coast protocal, which I can understand can be slight diffrence but this is totally confusing her. Who do you trust??? I just wish I could give her the answers, but I can't. I feel she should go to a bigger city and go with them. But then I look at my own situation and feel I got great care where I was. How much more serious is this involving 2 diffrent cancer's in both breasts and already having one side sentinel nodes infected, she is having a minor surgery for the second breast for sentinel biopsie. Mine was done at the time of surgery. We have the exact same doctor's. I am just confused for her. She went from stage 1 to stage 111 overnight it seems! Any answers or comfort words I can give her would be appreciated!!!

                                                  Bridget                       

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  • bevsteed
    bevsteed Member Posts: 30
    edited March 2009

    Are there any  Stage IIIC triple neg women out there other than me?  I'm feeling kinda sorry for myself, getting the triple wammy of stage IIIC and triple neg, with 27/29 positive nodes.  Is there any realistic hope for me?  I sure do want to survive! 

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  • conniehar
    conniehar Member Posts: 954
    edited March 2009

    Another Stage IIIA girl checking in.  I hit my 2 year mark 2 weeks ago.  Woo Hoo!!  It really does still seem like yesterday though.  My HUGE 10cm tumor was not seen on mammo or U/S, but it was picked up on MRI.  I am currently on Tamox and looking forward to many more years!!

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  • sharalou
    sharalou Member Posts: 223
    edited March 2009

    Hi,

    I was dx in dec.2004.  I felt a lump, had mammo, then ultrasound (showed up).  Had left mastectomy, chemo, rad, reconstrution, then the expanders taken out. Burnt from the rads.  I am on arimidex now.  It's over 4 years, and I am doing great!  Complaints are: some hearing loss, eye sight change, and very low sex drive.  Anyone else in similar position?  Would love to hear from you, at Shariwest@aol.com

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2009

    I'm curious what Grade the stage 3 gals are.

    There was a long thread last year about lobular really falling into only grade 1 or 3 and 2 is a misnomer (I am a grade 2).

    I think, with lobular especially, it is less about the stage --because they stage by tumor size and node involvement, and more about grade...(mitosis/speed of growth).

    Good luck to all!

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2009

    Sherri, thank you so much for your post.

    WOW...4-1/2 years.  I hope to see it myself.  

    I'll be 2 years in April, so not sure if grading has changed in 2-1/2 years.  I think mine was sent to Mayo.  My mitosis was 0-1, but that grade 2 has been haunting me.

    I'll have to reread your posts on your treatments.

    thank you again, sister in BC, I so appreciate the info.  I get so weepy right before my onco visit (and scared)...so any posts like yours are amazing!!

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited March 2009

    Sherri-

    Interesting. My pathology report says the same thing- classical lobular with tubulolobular features. Mine was graded as 2, for whatever that's worth. It was definitely slow growing. I had expressed concern about an area I felt in the breast in 2000 and 2004. Nothing showed on mammo or needle biopsy either time. When I was finally diagnosed it was in the exact area I'd been worried about. Sure wish someone had offered an excisional biopsy but oh well. 

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