Any ILC's w/large tumors in both breast?

stillme
stillme Member Posts: 17
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hello to all you strong supportive beings:  I'm new to posting but have really appreciated reading all your sharing on these boards.  I had bilat mast 3 weeks ago with a large tumor in each breast.  Frankly I'm still shocked because I kept a very healthy lifestyle my entire adult life (48yo).  I've heard ILC is more common to be in both sides and to not be easily detectable on mammos  (had all clear mammo in '05 but my current surgeon say's these were there maybe even 10 years).  I had tissue expanders placed for future DIEP but they seem to slip around abit.  Anyone have that happen?  After PET/CT and MRI both showed no node involvement, they found 2 nodes involve on Rt.  Which that makes me wonder how to screen for future if those scans were not reliable?  So I'm going to have to do chemo (I'M REALLY SCARED), and because I have 2 little girls 6 & 9 at home coming into winter I worry about catching something they bring home from school.  And because of the large size of the tumors I must do radiation on both sides.  Doesn't it seem that if they removed both breasts that there would be nothing to radiate?  Please if there are any of you great warrior women out there that have gone through something like this any and all advice is greatly appreciated.--

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  • nash
    nash Member Posts: 2,600
    edited October 2008

    Hi, stillme. Welcome. I don't have experience with bilateral involvement, but I did want to chime in and say that my kids were 5 and 9 while I was on chemo, and I thought surely I would catch every germ on the face of the earth from them. Amazingly, I didn't get sick once, even when everyone in the house (including DH) had the stomach flu at one point, and my WBC were really low. I didn't do anything special--somehow I just didn't get sick.

    It's not unusual to have to do radiation after bilat mast. They will want to radiate the R axillary area b/c of the nodes, and I'm guessing that they may be radiating your chest wall b/c of tumor location and margins. Is that how they explained it to you?

    I'd suggest finding the thread over on the Chemo section of the boards for the women who are going to start chemo the month you will be starting. My chemo group was a godsend for me, and I don't know how I would've gotten through that period w/o their support.

    That's a little scary that the PET/CT and MRI both missed the positive nodes. What can I say? There's just no 100% guarantee with any sort of imaging procedure, and that sucks, b/c how can you believe any negative results you get? I struggle with that all the time. My onc will tell me some test came back OK, and I think, "Yeah, right." My baseline mammo at age 37 missed my ILC that was then diagnosed a year later, and my late Stage IV bc mom had her very large (over 4cm IDC) tumor missed on mammo for years leading up to her diagnosis. It's disconcerting.

    As far as the expanders, you might want to post over on the Reconstruction board about that--there's tons of girls who have expanders in who will be able to give you input.

    Good luck to you, and big hugs as well. 

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  • stillme
    stillme Member Posts: 17
    edited October 2008

    Hi Nash:  Thanks for your warm welcome and I want to say that I have seen your posts around and appreciate all your helpful feedback.  You are a wealth of knowledge!  I have not met with a rad onc as of yet but that's next on the long list of practitioners on my team.  I'm glad to hear you didn't get sick during your course of chemo.  Did they also tell you to wash your laundry separate from the kids?  I guess while I'm detoxing from the chemo the kids are susceptible or some such thing.  I will check into the other boards for more specifics because I am really going through some emotional turmoil about doing the chemo and I have got to get over it.  Thanks again

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited October 2008

    Unless your tumors were very close to the chest wall, I would assume they are doing node rads, rather than chest wall.  Is that the case, or will you find out more info from your rad onco.  Questions, questions.  I know some don't want answers, but seems they would offer reasons why for those who DO want to know when, where, why and how.

    Good luck with the rads, prayers to keep you.

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  • nash
    nash Member Posts: 2,600
    edited October 2008

    You're welcome, stillme. Smile I have to say, between my mom's bc, for which she was on active treatment for 5 1/2 years before her death, and my bc, I've learned more about bc than I ever wanted to. The thing is, though, I've learned it all from the women on sites like this one and from reading medical journals. I've learned very little from the doctors.

    I haven't heard about having to do laundry separately from other family members while on chemo. You might want to post a separate post on the chemo board about that and see if anyone knows anything about it.  How did the doc say the chemo would be transmitted from you body onto the clothes? Through pores is the only thing I can think of, and I didn't realize it was an issue. 

    I remember how scared I was the first time I went to chemo. I was surprised, b/c I'd been taking my mom to weekly chemo for years, and knew all the nurses and the drill, etc. But when it was my turn, I felt like running out of the building. Once you get the first round over with and know what to expect, it will be a little easier emotionally, I think.

    Good luck, and keep us posted on how you are doing. 

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