Choosing a bilateral mastectomy with IBC?

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tae
tae Member Posts: 16
edited June 2014 in IBC (Inflammatory Breast Cancer)


I thought I was convinced that I wanted a bilateral mastectomy (scheduled for 11-19-13) following my chemo for left breast IBC. Now that the date is getting closer, I'm starting to doubt my decision. I'm not finding much out there to help me, research-wise, regarding the possibility/probability of reoccurrence in the healthy breast. My surgeon says it's only 1%, but I've heard enough stories of those who had to go back and have the other breast removed to trouble me. Can anyone out there help me with either research, or just their own personal decisions?


Teri

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2013


    Here's one. Pretty low incidence, even though higher than other types.



    http://www.ncbi.nlm.nih.gov/pubmed/21390499

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2013


    Teri,


    My decision to do a bmx was because I was stage IV from the start and did not want to go through the same process on the other breast later. I also wanted symmetry. My breasts were large and I would have needed surgery anyway on the opposite breast to bring the size down to match. I had them both done and I'm happy that I can get by with camis and no more bras. I don't have any more upper back pain or problems with one side being larger than the opposite.


    It's a personal decision.


    Terri

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  • cider8
    cider8 Member Posts: 832
    edited October 2013


    very much a personal decision. I started with IDC, mucinous and DCIS on right; I had to have the mastectomy. On the left I had atypical lobular hyperplasia. I decided on BMX. I still ended up with IBC on the LEFT side, even after BMX. I knew I couldn't be OK with so much surveillance on the left breast initially. But BMX does not guarantee no recurrence or advancement. Sometimes I wish I would have kept my breast for these two years in between, but I knew I would have been stressed the whole time. I don't even know where I fall %-wise. My IBC Clinic doc says I have a very complex case (words of doom!). If you can feel ok with keeping the healthy breast, I say go for it. I really miss the breast sensations.

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