DCIS

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  • Emily2008
    Emily2008 Member Posts: 605
    edited February 2009

    Well, I was dx with IDC and DCIS in left breast and had a mast.  I just had a rt sided mast of my healthy breast b/c I'm BRCA pos.  However, I don't think any woman is crazy to consider doing what you're thinking of doing.  Living with bc or the fear of bc or oc is horrible.  Especially for a woman like you who has seen so many family members battle these cancers.  I think you should just get all your info in front of you, get the facts, and talk the decision over with people who can help you.  Ignore the people who think you're overreacting.  They're not dealing with cancer and God willing, they won't have to.  They can't possibly understand your concerns.  I'm not saying this about your husband; I know he just is concerned about you and doesn't want his wife to have more surgery than necessary.  But, in the end you have to make a choice you can live with and feel good about.

    Believe it or not, after finishing surgery and chemo for my IDC and getting the genetic results which said I have up to an 80% chance of an add'l bc, I **STILL** had family members tell me I was being too drastic in having the other breast removed prophylactically.  Huh?   Wonder what they'd do with an 80% bull's eye hanging over their heads (or breasts, LOL!)

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  • abinneb
    abinneb Member Posts: 550
    edited February 2009

    80% bullseye!  Good comparison Emily!  And sadly, most won't get it.

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  • ghety
    ghety Member Posts: 478
    edited February 2009

    just had double mastectomy last week for my DCIS, left side only had DCIS. Just got my pathology reports back yesterday and the right side was clear, left side had DCIS only (lots more than we thought), nothing invasive though. Doc told me to consider myself "cured", no chemo, no rads , no tamoxifen. All the reasons I chose this route. I realize I can't expect this as complete cure but I am as close as I can get and that was my goal with the bilat mastectomy. I never had a second thought about choosing this route. Love and prayers for your journey,

    Carole

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  • suegmomof3
    suegmomof3 Member Posts: 168
    edited February 2009

    Well, if you're crazy, then so am I ... I have a large area of DCIS in my left breast and am scheduled for a double masc on Feb 27 ... I don't want to have to worry for years and years to come ... I have young children and way too much livin' to do!!  So that's why I've made that decision.  Plus it will make reconstructive surgery easier (so they're symmetrical) but that wasn't a factor in my decision ... just a bonus.  :)  good luck with your decision......sue

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  • DVSB
    DVSB Member Posts: 13
    edited February 2009

           I know what you mean....... I have Stage 0 DCIS and a family history of breast cancer,

    My mother, 2 sisters 2 cousins............ after a number of biospsis and the remove of

    3 papilloma, over that last few years, I am schedule for a bilateral mastectomy on Feb.18th

    and no reconstruction for me........ I am 65 years old and will be glad not to have to worry

    about this for the next 20 years.............

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  • mikita5
    mikita5 Member Posts: 373
    edited February 2009

    Emily: Hubby has finally come around. After talking to the doc at Johns Hopkins, he said he thought I'd made the right choice. THEN, the surgeons office called me Friday to tell me my surgery is scheduled for March 30. He then asked "are you sure you want to go thru with this?"..Perhaps he's just making doubly sure... Regardless, I'm going thru with it. 

    I just heard from a friend who had DCIS in one boob, had radiation that burned it up! After the radiation, she had a mammo, 2 MRI's and they told her she was clean in October.  Well, after it was burned up, she decided to have a masct. on it. Yesterday, the pathologist report said she had more DCIS in that same breast. So if it hadn't been for vanity, she'd be walking around with cancer and not knowing it.

    I feel if there's cancer somewhere in there, there's a certainty that there's more floating around.. My decision is final..and I can't wait till March 30. I think the thing I most want is the pathology report on them after they take them.

    Thanks everyone for your stories..

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  • dmh2418
    dmh2418 Member Posts: 64
    edited February 2009

    I was dx in July and wasn't even given the option for a mast.  Instead I had the lump and rad but now I wish I was given the option of a mast because I can't take the tamoxifen because of the se's.  I'm going for a second opinion at our cancer center to see what other options I have.  I think I would have been better off with a mast so I wouldn't have to worry about bc coming back.  I too have an extensive family history of bc and other cancers so would have preferred the peace of mind.  Just listen to what your body tells you and go with what you are most comfortable.

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  • rascal_gal
    rascal_gal Member Posts: 75
    edited February 2009

    I was diagnosed with DCIS in my right breast, and chose to have bilateral mastectomy. My surgeon told me to make sure this is what I wanted and not let anyone influence me. The PS and other doctors think I made the right decision. My surgery is sheduled for March 3rd.  Right now I feel it's the right thing to do for my peace of mind.


    Good luck and I hope everything will be ok with you. I'm scared to death but have hope that they won't find anything else.

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  • ghety
    ghety Member Posts: 478
    edited February 2009

    Me too. Diagnosed with DCIS in left breast, had double mastectomy with immediate reconstruction 3 weeks ago. Absolutely no regrets, and lots of peace of mind. All my best to you as you make your decision.

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  • mikita5
    mikita5 Member Posts: 373
    edited February 2009

    Good luck rascal gal...... You'll do fine.. I'll be right behind you..

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  • Roxy3
    Roxy3 Member Posts: 26
    edited February 2009

    I had one boob off for DCIS and a small invasive and it wasn't bad at all. In fact, sometimes, I wished they had taken the other boob at the same time so I wouldn't have to worry ever about that boob failing me too. Good luck with your decision and go with your gut.

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  • Roxy3
    Roxy3 Member Posts: 26
    edited February 2009

    I had one boob off for DCIS and a small invasive and it wasn't bad at all. In fact, sometimes, I wished they had taken the other boob at the same time so I wouldn't have to worry ever about that boob failing me too. Good luck with your decision and go with your gut instinct.

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  • sweetsunsets55
    sweetsunsets55 Member Posts: 9
    edited February 2009

    I too was diagnosed with DCIS in my left breast in Aug. 08 and have a very strong family hx of breast cancer . After taking some time to educate myself,  meet with my surgeon and oncologist , and get a second opinion  - I decided to have a bilateral mastectomy. This was done in Jan. 09. It made sense to me intellectually almost immediately. I did not want to have a recurrence of a more invasive breast cancer , nor did I want to live my life worried about the second breast. It took a little more time for my head and heart to come into alignment. I do not regret my decision at all. I need no further treatment and will now live my life with peace of mind.... the cancer is gone .I did not have immediate reconstruction. I wanted to be assured that the cancer was what we thought in the left breast and the right breast was clear. I have spoken and read about folks who had reconstruction only to find that radiation or chemo was needed after pathology did a more extensive study of the full breast tissue. Those folks I spoke with, wished they had waited.

    Reconstruction or not will be the next decision to make.

    Good luck... only you know what decision is right for you....

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  • Patti51
    Patti51 Member Posts: 2
    edited February 2009

    Not crazy at all!  I was diagnosed Dec 12, 2008 with DCIS in my right breast with grade 3/ES & PR + .  I was told lumpectomy or mastectomy were my choices.  I was shell shocked, no fam history etc... but I pulled myself together and began to read everything I could on this DCIS (knowledge is power).  That is how I came to find this site.  Anyway, at 57 yrs old I made the decision to have a bilateral mastectomy for peace of mind (too many calcifications on past mammos).  I also did not want the reconstruction, I have a partner that is very supportive on this decison and that helped tremendously!  I had my surgery on Jan 29th  with a SNB of 3 nodes that were all negative. I am in my 3rd week of  recuperation and besides being sore and some swelling my doctor says I am doing well.  I do not have one regret and there is nothing like some peace of mind to help with recovering!  This site and people like you all have been wonderful during all of this. I wish all of you well with your recoveries.  Smile

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