DCIS or ADH - what to do

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Mariemt
Mariemt Member Posts: 2
edited January 2015 in Surgery - Before, During, and After

I'm 42 and had a reddish discharge and went thru an exploratory surgery here in Santa Barbara, CA. My pathology came back that I had DCIS - just 4 mm - my surgeon suggested I do a mastectomy and that I'd likely lose my nipple. The mastectomy was suggested in part because I don't want to do radiation or tamoxifin because I was looking at getting pregnant.

I decided to get a second opinion (Cedar Sinai in LA) and a met with a different surgeon at Pink Lotus Breast Center. She said she could do the nipple sparing and her surgery technique was far less deforming. I asked to also have a second opinion on pathology and that came back that I had ADH and not DCIS.

What should I do - trust the 2nd pathology or the first? I'm potentially getting a 3rd to find out for sure. I had just come to peace with my decision for the double mastectomy. Is it odd to get a double mastectomy for ADH? My genetic test came back negative. Ovarian cancer is in my family but not breast cancer. I don't know if I want to continue to worry about my breasts for the rest of my life but I don't want to cut them off it's unwarranted.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2015
    My initial biopsy came back locally as ADH/ALH from one doc and DCIS/LCIS from another. My specimen was sent to Vanderbilt and deemed to be ADH / ALH. On the Johns Hopkins site there is a place where you can have your labs sent for a second (third) opinion. Take care!
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  • dmarie71
    dmarie71 Member Posts: 81
    edited January 2015

    My original pathology said LCIS. My 2nd opinion came from John Hopkins. They said ALH and suggested I get a 3rd opinion at Vanderbilt as a "tie breaker". I recommend you get a 3rd opinion at a leading hospital, such as Vanderbilt. Good luck!

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  • momoschki
    momoschki Member Posts: 682
    edited January 2015

    I had a very similar experience- needle biopsy was first dx'ed as DCIS. Second opinion (at different hospital) said "borderline" ADH/DCIS. Yet a third opinion ( at a third hospital) found ADH only. Although this all happened 4 years ago, it still confuses me. Did I have cancer or not?? Apparently, ADH & DCIS pathology fall along a continuum, so the distinction is not always clear cut. I agree that you should seek a third opinion--- perhaps this will be a tie breaker and give you some guidance on how to proceed. Mastectomy for ADH is not usually indicated.

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