I'm a Breast Cancer Mutt

GrandmaWolf
GrandmaWolf Member Posts: 88
edited June 2014 in ILC (Invasive Lobular Carcinoma)
I'm a Breast Cancer Mutt
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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited December 2007

    I have a stage 1 grade 2 ILC low mitotic 1, yada yada.  All the good information out there isn't for me though.  ILC usually being HR+,  the treatment gold standard is hormone therapy, not chemo.  The kicker here is my ILC is triple negative.  Trying to find more than 2 sentences on the subject of Negative ILC is exhausting.

    This ILC dx is a second primary after I had IDC, again triple negative, stage 1, 8 years ago.  Add to this, the recent MRI searching for more ILC, found a 3rd primary stage 1 grade 1. Get this, it's hormone receptor Positive!!!  I suspect the 3rd one was the result of the radiation for the first lumpectomy. But better a new primary than a "reccurrence of the first one though.

    Anyway the chemo I am on for the lobular isn't doing anything for new 3rd HR+ primary 

    You can understand how sorting all of this out can be dizzying.  Next will come the discussion of bilateral etc etc. 

    Are there any other Breast Cancer Mutts like me out there?  I'd love to hear what your experience is, and how you deal with the decisions.

    As we have all found out...

    Nuthin about this is easy

    Grandma Wolf aka Dakota

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  • sherryw
    sherryw Member Posts: 172
    edited December 2007

    Wolf

    Sorry you have such a heinz 57 effect going on there.  I am sorry but

    I can't help you with any information, I just wanted to post and tell you I was sorry you are having to deal with the complication.

    Me 

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  • wallycat
    wallycat Member Posts: 3,227
    edited December 2007

    I too have nothing to add of value just am sorry you are dealing with this.

    One of the reasons I opted for bilateral mastectomy is so I do not have to be as vigilant about monitoring this area (even tho I know it is not 100%).  I never imagined I would get 1 breast cancer and I am speechless as to how I would react in your situation.  I pray that all works out well ...

    I sure wish there were a cure so we ladies do not have to contend with this beast any longer!

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  • nagem
    nagem Member Posts: 353
    edited December 2007

    I'm sort of a mutt. I had ILC that was hormone-negative and her2neu-positive with very aggressive LCIS in the margins. Really unusual combination. I had chemo (AC/T) and herceptin and radiation, and (at my request) a bilateral mastectomy. I wanted to hit it with everything I had so I wouldn't have regrets later.

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited December 2007

    Nagem...

    Yep, of all the responses to my post...you are the only one that could be classified as a ILC Mutt.  That was mix...not even a straight triple negative.

    Your reasoning also follows my own.

    How did you make out with your bilateral?  Did you have reconstruction or no?  I think, I am going straight simple bilateral mastecomy..no reconstruction.  

    Monkey-face, and Wallycat, I thank you for your encouragement. Actually as nutty as my situation is....they are all early stage primaries.  It's not as if at this point I had a recurrence or metastic situation which would have me frantically out of my mind. I am trying like hell to keep it this way. I just feel like the guy on the old Ed Sullivan show that had to keep all of those saucers spinning on tall sticks, before one of them fell.

    May all our boats get to the safer shore.

    Grandma Wolf aka Dakota 

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  • nagem
    nagem Member Posts: 353
    edited December 2007

    GrandmaWolf, I had a bilateral mastectomy without reconstruction and am pleased with my choice. If you're curious about this option, you might check out breastfree.org, which has a variety of first-person accounts (including mine, posted under the name Mia, the model name of my chemo wig) and in-the-flesh photographs, plus postsurgical comfort and healing tips and "fashion" advice. My experience and observation lead me to think that the best results are obtained if you're very sure that you don't want reconstruction and make that clear to your surgeon, who can then remove all excess skin so you're not left with "dog ears." I asked for a 10-year-old-boy look, and that's what I got. It's not a bad look! Feel free to contact me with any questions. One thing I was grateful for was the women who spoke with me frankly about their experiences and helped me make decisions, and I'd love to pay that forward ...

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  • Naomi12475
    Naomi12475 Member Posts: 253
    edited December 2007

    Hi Dakota, I guess that I was kinda a tossed salad when it came to my cancers. I had DCIS, LCIS, and IDC. I really didn't have a choice to deciding my tx because my tumor was so big. I had neo adj. chemo, 4 AC, dd, followed by 4 taxotere, followed by 35 rads. Shrank my tumors to almost nothing. Still had lots of stuff under my arm though, 10 of 17 pos. I decided on a prophy on the right side after I got the path for the left. They thought that it was just IDC!!! I haven't regretted for a second about having the other side done. Oh yeah, I requested to have it done. My breast surgeron was against it. As far as reconstruction, well, I really did want to have skin sparing, but, there again, I didn't get what I wanted there either. But in the end, I had the diep flap done. I am still messing around with the tweaks, but I look pretty good considering where I started from. Just like nagem,I felt that I should throw everything at it that I could so I wouldn't have regrets later.

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited December 2007

    Nagem,

    Yes... that is what I think will work for me as well..That 10 year old boy look. I will impress this choice on my surgeon. I'd like to be finished with all of this by spring.  While I haven't gotten another motorcycle yet, I do have a 27 speed bike, I love to ride the trails with.  As soon as I sign off on this, I will visit the website you mention.  Thank you for sharing this with me, indeed you have played this forward to someone seeking 1st hand experiences.

    Grandma Wolf aka Dakota

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited December 2007

    Naomi,

    Toss salad indeed, and from what I have heard, many chose the bilateral, not only for the prophlatic value, but also getting things balanced on one side is often more difficult than a bilateral situation.

    Like yourself, my one side can be handled with lumpectomy...but Sigh, lets just get this all over with, and get on with it.

    It looks like you are doing that, and not regreting your decision is the most important thing, I want to assure for myself.

    Thank you for your response.

    Dakota

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  • roland
    roland Member Posts: 1
    edited December 2007

    Hi

    I am also a breast cancer mutt. I have ILC in one breast and IDC in other one is positive and one is negative Am starting chemo next week Just had rads first time around. This time I will have both chemo and rads.

    It is very confusing. They have stopped my arimidex. Oh and my two were exactly a year apart. Let me hear from you. My real name is Linda.

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  • carstell
    carstell Member Posts: 53
    edited December 2007

     I just had a left mast with expander placed on 12/21. so far so good.I was initially dx with 2 tumors. 1 ilc 1.5cm and after an mri an 8mm ilc with lcis. after my mastectomy the pathologist found that it was not 2 small tumors, but 1 larger tumor (4x3x3cm). Upgraded to stage 2 grade 2a. And also saw dcis. My surgeon called me "unique" Yea for me. I will be seeing an oncologist 1/22.

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited December 2007

    Linda, and Carstell,

    It would seem there are more and more of us Mutts than at first glance.  There are times, when "unique" is desireable...and times when it is not.  This is definitely not one of those times.  Linda, with such two different cell types, it appears that you might also have two primary tumors... or is one a local recurrence of the original one?

    My risk of a 2nd primary was 5%, getting the 3rd primary even less of a %...  so I don't look at the %'s any more.   I'm doing chemo just to pick up 4-6%, because if I didn't, you know where my foot would land on the recurrence table.

    It's just a shame we don't have this kind of "luck" at percentages when we play the lottery.

    Good luck to both of you with the chemo.  It is nasty stuff, but there are ways to get through it and still function.  I am half way through.

    I keep telling myself bald is beautiful....but it's hard to believe when I see one of those Troll dolls in the morning mirror.  Thank goodness for nice head wraps, and large earrings.

    keep me posted on how things go for you both.

     Grandma (aka Mutt)Wolf

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

    I didn't realize it, but I think I might be a mutt too! I just re-read my path:

    Larger tumor: Infiltrating Mammary Carcinoma, predominantly lobular with focal ductal features.

    Smaller tumor: LCIS pleomorphic type with focal necrosis and pagetoid extension to ducts.

    Although I am er and pr positive, and her2neu negative.

    Does this make me a LOB MUTT?

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  • GrandmaWolf
    GrandmaWolf Member Posts: 88
    edited December 2007

    laura...

    My goodness, not being sure, I don't think this Kennel has any

    pedigreed exclusions.  No one diagnosis "fits all" thats for sure. 

    Your hormone receptors for ILC... were right on the mark though.

    Thats the part that has me looking at a blank wall.  ILC triple neg.

    Looking at your profile info, it looks as if you are doing well. 

    That is encouraging.

    dakota

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

    dakota -

    LOL - Mutts are great! LOL

    It is unique being a triple neg ILC girl. Did you have just one lab do your path? If so, would it be possible to get a second one, maybe send it to Mayo? (I've heard of others here that have.) I would hate to see you not have the benefits of Tamoxifen or an AI, if it really isn't triple neg!

    Any yes...thanks, so far, so good! I consider myself NED, with a bit of hesitation, as I am still a bit paranoid at times. But the good part is that I can say the words "at times". Of course, when you're first diagnosed paranoia is at an all time high. Just fyi!

    STRENGTH for today, HOPE for tomorrow!
    Dx 7/21/2005, ILC, 4cm, Stage II, Grade 2, 1/11 nodes, ER+/PR+, HER2-

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