New to ILC

AnneW
AnneW Member Posts: 4,050
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with ILC the other day. Core biopsy caught a 3mm well-differentiated, ER+ tumor. It was in scar tissue from an old fibroadenoma scar.

I had IDC (stage 1) in the other breast 5 years ago. Did lumpectomy, radiation, and AIs for 4+ years.

My next step is an MRI. I had one 4 years ago, and there were a few areas of "low suspicion" (!) that we should have followed more closely, and I'm not sure how it got over looked. So, now we'll compare and see what is really going on.

It's a quandry. If it is indeed only 3mm, I'll probably do lumpectomy and radiation again. But I am LOATHE to give up my nodes on this side! The SNB didn't work first time around, and I lost them all. That, to me, was worse than cancer itself!

But, if there's more of the sneaky stuff lurking, I'll do bilaterals, and hopefully they can do implants on the side that was irradiated 5 years ago. No TRAM or latflaps, for me--I use these muscles too much (climbing, etc) to cut into them!

So, it's one step at a time as I learn more...It sucks to be going through this again. It just lets you know that, yes, that other shoe can drop no matter what...

Anne

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  • nash
    nash Member Posts: 2,600
    edited September 2007

    Sorry you've got another primary! You're right, that sucks. Pretty amazing that they found it, though, especially with lobular being such a trick to hunt down. Let us know how the MRI goes. Hopefully the 3mm will be all you're dealing with and you can do the lump/rads again.

    My surgeon said she has about a 70% success rate with implants on radiated skin. Hope that will work for you--I know what you mean about not wanting them to cut muscle. I'm athletic, too, and have serious reservations about the lat flap (I don't have enough flesh for the TRAM).

    I wonder if the SNB will work for you on the other side. I understand the axillary dissection is the pits, and I sure hope you don't have to go through that again, either.

    Good luck, and keep us posted. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2007

    Hi Anne -

    I've seen your posts occassionally throughout the past year or so...I'm shocked and really sorry you have to go through this again! It's scary to know that this type of thing can happen. Good luck with the decisions you will have to make. I hope everything goes smoothly for you! Hang in there...be well. We're here for you PRN.

    Laura

    (btw - your avatar is beautiful!)

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  • zap
    zap Member Posts: 2,017
    edited September 2007

    Hi Anne:

     Anne:

    I have just come upon you "accidentaly" but I am glad I did. I know you need to make all the decsions yourself.  The nice thing about this place is that we all know that and no one tries to argue one move over another.  It is such a personal thing.  I do wish to tell you that I will be thinking about you.  I understand your anxiety.  How "lucky" in a weird way that you were Stage 1, yet now you face another primary.  I have so often been envious of someone in stage one.  I am stage II. I know now that it can all just change without warning, and so we are  never in a safe place when it comes to staging.  I wish you well as you begin your second journey.  You sound strong to me.

    Susan 

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  • AnneW
    AnneW Member Posts: 4,050
    edited September 2007

    Thanks for the words of encouragement, sisters.

    Laura, that picture of me was taken a year after treatment the first time, high in the Swiss Alps. I'm hoping there will be a similar picture of me this Christmas from the wilds of New Zealand. Pending treatment, though!

    I'm going to have the MRIs done Tuesday. I'm thinking--today, anyway--that regardless of results I'll go for a bilateral mastectomy. I can then take my time to decide about reconstruction, if any. I just don't want to go through this again. And as long as I have a breast, I'll never feel secure.

    And I could make that trip to New Zealand that we already have tickets for! (Nonetheless, we can postpone it if needed.)

    So, that's the latest. Thanks again for all the cyber hugs. They certainly help!

    Anne

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  • AnneW
    AnneW Member Posts: 4,050
    edited October 2007

    Just an update--the MRI showed cancer in only this breast--about 1 cm area near where the biopsy was. The other breast is clean.

    I've decided that two strikes and they're off. I'll be seeing the surgeon Tuesday to discuss the surgery and start looking for a plastics person. Not sure which reconstruction I want to have. Depends on the surgeon's thoughts about the breast that had radiation before.

    Anne

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Anne---what were the "areas of  low suspicion" that they saw on MRI 4 years earlier? I ask because they  saw a 7 mm area on my LB on last year's MRI----clear mammos 2 weeks later, so they said false findings.  Now my most recent MRI still shows that area (but now 6 mm), but now a new area in the RB--2 mm and an area between the breasts--3mm.  Follow up US last week was completely negative, so docs again say false findings--recommend another MRI  (and mammo) in 6 months.  I want to believe them, I certainly don't want any unecessary biopsies, but are the MRI findings most likely false if the US and mammos are clear?

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2007

    Anne,

    I was diagnosed this Feb with lobular after having an IDC diagnosis six years ago.

    I had a lumpectomy six years ago and radiation.

    I had a bilateral mastectomy in March with tissue expanders and AlloDerm.

    AlloDerm is a genetic tissue from a donor who doesn't need it anymore

    ( that is a nice way of saying dead person) the tissue has had all its DNA stripped. They implant that under the breast and it grows into your skin and takes on your own DNA and becomes yours.

    It strengthens previously radiated skin making it possible for women like us to get implants.

    I have been in chemo since April and will be done in November some time. I need to have rads because I had postive nodes and then when they are all done I will have my exchange surgery to silicone implants.

    Having a bilateral was the best decision I ever made. I feel so clean to be rid of my breast tissue that was harboring all those terrorist cells.

    Please pm me if you want to talk. I want to help you any way I can.

    It is such a surreal feeling to get rediagnosed and then to find out you switched teams is a real shock! Not only did I switch from Ductal to Lobular, but I switched from tripleneg to er/pr +++

    I am sending you a big hug.

    Love,

    g 

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  • AnneW
    AnneW Member Posts: 4,050
    edited October 2007

    awb--I will ask my surgeon and her radiologist at the breast center to compare my MRIs and see if that "area of low suspicion" is in the same spot as this cancer. My bet is yes.

    nosurrender--thanks for the allograft info. I've heard you and others mention it, but I hadn't googled it yet. If that would work for me, I'd be thrilled. The thought of going to another state for DIEP is acceptable, but not what I want to do. And I will be glad to get these time-bomb breasts off.

    Anne

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