How to decide ??

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Goldycat123
Goldycat123 Member Posts: 25
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I have dcis in 3 spots that are near each other but if taken out in a lumpectomy it could be the size of an apple or orange. I'm pretty large breasted so it would be about 1/4 on top outter side. They are if course concerned about clean margins so they are thinking of suggesting a masectomy - I need to decide which . I am scared to have such a major surgery as a masectomy ! How can I decide this ?

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  • shorfi
    shorfi Member Posts: 791
    edited July 2013

    For me...it was a no brainer. I wished that I would have had the mastectomies the first time around. And I had IDC, stage I, grade 3 at that time. Now I have DCIS in the opposite breast, so making the choice to have bilateral mastectomies with immediate reconstruction was easy FOR ME.

    I wish you the best!

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  • LAstar
    LAstar Member Posts: 1,574
    edited July 2013

    I had the same decision.  I tried two lumpectomies but could not get clear margins so I had to have the MX.  Lumpectomies are much easier to recover from and, if you really do not want to have the MX, you will know you have tried everything.  One issue I did not realize is that, while the survival rate is basically the same for lumpectomy+rads vs. MX, the recurrence rate is higher for the former.  

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  • Annette47
    Annette47 Member Posts: 957
    edited July 2013

    One thing to keep in mind is that if you try a lumpectomy and they can't get clean margins you can then proceed to a mastectomy, but once you've had the mastectomy there is no going back.

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  • ballet12
    ballet12 Member Posts: 981
    edited July 2013

    Goldycat,

    I see that you are hormone negative (ER and PR negative) and have high grade DCIS, and you look young in your avatar picture. Your recurrence risk might be higher than others, and you can't take hormonals, so that might actually be a reason to do the mastectomy, along with the multicentric DCIS issue, which would be a cosmetic issue.  If the MD's main issue is the cosmetics and getting the clean margins, then like Annette said, you can try to go for it, and if they don't succeed in getting clean margins and/or you are not happy with the cosmetic result, you can go to mastectomy.  You indicated that you had lymph node removal.  Did they do a sentinal node biopsy with your lumpectomy? If so what was the decision behind that, because that is not so common anymore with DCIS (unless one is doing a mastectomy).

    I had three lumpectomies for multifocal DCIS, but the cosmetic defect is largely on the underside of the breast (as in it's "missing" now), but the top part looks OK (so could get away with a low cut dress if I desired).  If the defect would be on top, then that's another story.  Tough call.  Best of luck.

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  • deb1973
    deb1973 Member Posts: 96
    edited July 2013

    So sorry you are stuck with this choice. I chose mastectomy for some of the exact reasons ballet outlined above (plus I have a toddler and there were other factors). But each case is so very different. Have your doctors made a recommendation? Now is the time to gather information and ask lots of questions. Somewhere, in other threads, Beesie has a list of questions that are very helpful to reflect upon in making this decision. Best of luck!

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2013

    Goldycat123, 

    As you wait for more members to respond, you may want to check out the main breastcancer.org site for information on Mastectomy vs. Lumpectomy.

    We hope this helps!

    The Mods

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  • Heart2930
    Heart2930 Member Posts: 139
    edited July 2013

    It really is a tough call. One thing I have learned through my own experience as well as stories from others is that the area they take out is almost always larger than the area the imaging shows.

    I had a VERY large lumpectomy. We were unable to get clean margins. My BS, RO, and I determined that with Rads I would most likely be ok. The margin was only positive on 1 of 6 slides. Now that I am through all that and the swelling from surgery and rads has gone away, I am wishing I had just done the MX. I had serious skin issues during rads, and now have one side that is a 38D and one that is a 38B so I am stuck wearing a prosthetic. Given the information I had when I made the decision I don't think I would have changed how I did things, but with hindsight being 20/20...yup I would have done things differently.

    The only advice I really have for you is once you make a decision, don't second guess yourself to death. You can make yourself crazy doing that. The "what-ifs" associated with cancer seem to be never ending.

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