Skin sparing MX safe for lobular?

Jeannie57
Jeannie57 Member Posts: 2,144
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Does anybody have any facts about the safety of skin-sparing MX for those of us with lobular cancer?

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  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    Yes.  BMX done 2/10/12 and BS did a skin-sparing one which I learned afterwards.  So I've got floppy breast skin from the mammary fold.  Most of the floppy I have is on the lower side of the breast and more so at the lower outer quadrant.

    He wanted to leave as much skin as possible for recon.  1.8cm pleomorphic ILC in left breast with ALH and ADH in same breast at multiple sites.  Thankfully, not only were no nodes involved for me but the skin was bc free as well.

    WHOOPS, you asked for facts.  Sorry.  That I don't have.  However, I can tell you that the BS and the NP team at the Breast Clinic have been VERY conservative and serious about Lobular. I feel entirely comfortable with their handling and treatment of this.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited March 2012

    Thanks! I am going to a cancer center and want to trust them since they are a research center, too. But I can't find much info on the subject

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  • toomuch
    toomuch Member Posts: 901
    edited March 2012

    Jeannie - I also had a skin sparing mastectomy I don't think that there have been studies looking at skin sparing mastectomies in just patients with ILC. The studies I've seen have mixed populations but they've been shown to be safe as long as the skin margin is clean.

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  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    Jeannie, if the VA hospital did a skin-sparing for ILC on me I'd think it was okay.  For that matter, the Breast Clinic at my VA hospital was FAR more conservative and serious about my ILC, whether small or not, than the NCI I went to for a second opinion.

    I'm not saying this to talk badly about the center you're going to, merely to give an insight into another institution that is known for not doing things that are new in terms of technology or medical opinion.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited March 2012

    I had a skin and nipple sparing prophylactic mast before we knew I had ILC. I've asked 3 oncs and my BS if it's OK to keep the nips (it would be heartbreaking to lose them now), and they all said it's fine to keep them. I believe ductal would be a different answer for nips.

    I'll have to keep an eye on things, that's for sure. I don't know if I would have kept the nips if I knew I had ILC. One fought like mad to make it, so they're staying.

    Good luck with your decision Jeannie.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited March 2012

    Galsal, I see your point, thanks. Crescent5, I'm sorry for what you've been through and i'm glad your nipple fought through to make it! I'm pulling for you both and am so thankful to have this forum to ask questions and receive/give support!

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  • Galsal
    Galsal Member Posts: 1,886
    edited March 2012

    You're SO right Jeannie, this place is da bomb!  Hoping all the best for you.

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  • C-squared
    C-squared Member Posts: 514
    edited March 2012

    Is skin-sparing the same as nipple-sparing.  I also have ILC and would like the option to keep a part of me.  What is being advised?  Thanks!

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited March 2012

    My doctor wants to take both my nipples. For symmetry in the non-cancerous breast, my surgeon said. I hope that other breast is non-cancerous, anyway. I know there are some situations to save nipples, but I had too much ILC and LCIS to be safe. I'm interested to see if anyone has more info on the subject. And why does my doc want to take SN on healthy breast? I'm going to ask her because I'd like to have less Lymphedema concerns. If it's cancerous, too, I'm willing to take them then.

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited March 2012
    Jeannie
    I had a bilateral masectomy with one step reconstruction. I also had iLC, very small. My bc surgeon told me that if there was NO cancer near the nipple then  I could keep it and if there was then I would lose the nipple... I would not know until after the surgery and it worked out that I have kept mine. The other side was preventive.  Because I have them, in places like the locker room its very un-noticeable that I am reconstructed. I wish you the best. 
    Chocolate
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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited March 2012

    Hi,

    Don't want to scare you but I had a small 1 cm ILC in 2006 with a lumpectomy, radiation and Tamoxifen.  Four years later I had ILC in the breast skin, nipple and area where it was the first time.  The BS had to take all my breast skin and tissue from the left side this time.  If I had it to do over again, I would of had a masectomy the first time and have them take the nipples and as much as they could.  ILC is very sneeky and travels easily.  My oncodx was only a 9 in 2006 so I thought my Stage I cancer was over.  Good luck!!

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  • toomuch
    toomuch Member Posts: 901
    edited March 2012

    Jeannie - Did you have a breast MRI? If not, I would insist on having one prior to surgery so that the doctor's can look for lesions in the "good" breast. I had a breast MRI at the time of diagnosis prior to my lumpectomy and again a year later just before I had BMX. I also had a sonogram of my entire breast prior to BMX. My BS did not take the SN on the prophylactic side because the tests didn't show anything. The MRI isn't 100% certain because it can miss a mass smaller then 0.5 cm. I think the combination is the best screening that can be done at this time. 

    Whether or not a nipple sparing MX can be done is directly related to the distance the tumor is from the nipple. 

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited March 2012

    I have had breast MRIs on both breasts as well as ultrasounds, both with biopsies.  No ILC or LCIS was found in the left breast in any of the tests.  However, the radiologist also said he didn't see any macro-involvement in the nodes in either breast and after the SNB in the right breast with the lumpectomy, there indeed was macro-involvement in one node.  Pathology rules, I have learned. ILC is a sneaky beast.

    toomuch, I'm assuming the pathology after your BMX showed your noncancerous breast was indeed noncancerous?  I surely hope so!

    I am okay with not sparing the nipples.  It would be helpful to keep the skin, which is what is planned, but not if it is dangerous! I will be talking to my surgeon about all this soon and find out her empirical reasons for keeping the skin and doing a SNB on the healthy left breast. 

    Best wishes to all of you and thank you so much for your input. 

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  • bettypage
    bettypage Member Posts: 13
    edited May 2012

    3 yrs ago I had ILC in right breast as well as invasive ductal in left breast.  On 2-17-09 I had a bilateral mastectomy with skin & nipple sparing & immediate reconstruction.  Today I look great, feel great & have no evidence of disease.

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