Breast reduction before nipple sparing bmx for DCIS

August2015
August2015 Member Posts: 15
edited October 2015 in DCIS (Ductal Carcinoma In Situ)

Hi all,

Really could use your input if you went through anything similar.

I was diagnosed with DCIS in rt breast in August and am about to have surgery in two weeks. I need to have a double mastectomy because I was found to be brca2 pos so it's the best decision to protect myself in the future. The breast reduction comes in because the only way they can keep my nipples is if they raise them first on breast reduction. So it would be lumpectomy plus reduction first, followed by bmx in three months. I really don't want to have this extra reduction surgery but I really like my nipples, so.. I am very torn.

Another huge reason for why I'm afraid to get breast reduction first is because I got it in my head that surgery can spread DCIS (in case they don't get clean margins on lumpectomy and lose track of remaining dcis during reduction) into my blood/lymph and since there is no chemo for DCIS (not that I want it) I could get stage 4 disease. I know I'm going overboard with this fear but I don't understand why it's not really feasible. Several doctors told me it doesn't work that way but I can't get rid of these dumb thoughts in my head and I am so scared to do reduction but desperate to save my nipples.

I also want to have another child if it all turns out to be just DCIS so reduction would mean extra three month wait, but I also wouldn't want any stray bad cells in my body if I'm going to have crazy high pregnancy hormones. My dcis is ER/pr pos, grade 1&2.

If I don't do reduction and go for bmx right away they will have to reconstruct nipples later and my scars would not be hidden underneath the implants, they would be straight across. I am 39 and very body conscious.

Thanks for reading this, please contribute.

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Comments

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2015

    Hi August - my only input is that I did not have nipple sparing because they would have been too low. That was fine. I don't have much feeling along the scar line. It has faded to a small thin white line. I could use some fat grafting to add volume to the upper area but I prob won't. I didn't even want another surgery for nips so I got 3D tattoos from Vinnie Meyers. They are great and I've never second guessed that decision . Good luck with whatever you decide.

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  • ballet12
    ballet12 Member Posts: 981
    edited October 2015

    Hi August, sorry you have to deal with all of this. The brca situation is stressful enough. I don't have any scientific data, but there is no evidence, that I have read, that dcis is spread during surgery. To my mind, the greater risk is actually keeping the nipples, as they are still breast tissue, and with the brca gene, you are at more risk for recurrence with any breast tissue. The DCIS would be removed with the mastectomy, and since it is contained in the ducts and hasn't developed into the invasive stage, can't spread beyond the inside of the ducts.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2015

    I have had skin and nipple sparing BMX but if I had it to do again I would skip sparing the nipples. They have no feeling, and while others have reactive nipples, mine are not at all. They are no different than a 3D tattoo except that because I have had repeated surgeries due to skin healing they are not symmetrical. I was initially comforted after BMX to see my nipples there - made me feel like I still had breasts - I later came to realize, for me personally, that they did not matter. If I were in your shoes I would skip the extra surgeries and go straight to the non-nipple sparing BMX and either have nipples built later or 3D tattoo them.

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  • sunshinegal
    sunshinegal Member Posts: 209
    edited October 2015

    Hi August,

    I don't know if keeping your nipples would be advised if you're BRCA+ but if your docs are comfortable with it, have they discussed doing free nipple grafts?

    I had a single mx 5 years ago, and two months ago did a prophylactic mx on the other side. My nipple was too low to keep on the prophy side, but since the nipple areola complex was otherwise healthy (i.e. useable), my plastic surgeon actually grafted it onto the other side. It has no feeling and doesn't respond to stimuli, but it looks *awesome*. I am really happy with it. Oh, and I have a thin white horizontal scar on that side. Doesn't bother me and isn't visible in low-cut tops.

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