Lumpectomy #1 done. Facing #2. Should I go for a mastectomy?

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KimbytheSea
KimbytheSea Member Posts: 84
edited June 2014 in HER2+ (Positive) Breast Cancer

I've got invasive lobular cancer, Stage 1 tumor was about a centimeter.

 Now they tell me they've got to go back in there and get better margins in about a month. 

I have no idea whether to go for a lumpectomy and radiation or the double mastectomy. 

 I'm not getting any advice from my doctors and I'm so confused. The Her2Neu positive status is what scares me the most. 

 Any stories out there? The herceptin scares me, too, because of what it can do to the heart. I'm so depressed.  

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2012

    KimbytheSea, until more members post with their experiences, the article Mastectomy vs. Lumpectomy on the main Breastcancer.org site considers the pros and cons of both options.

    Best wishes,

    • The Mods

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  • bevin
    bevin Member Posts: 1,902
    edited August 2012

    HI Kimberly, I had to have a reexcision too. My doctor told me about 25% of lumpectomies do and he was at a top 50 cancer center. I hope this helps a bit.

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  • KimbytheSea
    KimbytheSea Member Posts: 84
    edited August 2012

    Thanks Moderators and thank you Bevin. Very helpful

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited August 2012

    Hi Kim

    Sorry you're having to go through this but you've come to a great site.

    My oncologist told me that HER2+ trumps everything, which is one of the reasons I decided to go for a mastectomy.

    Interesting report here about the UK and US percentages for women having to have further surgery after a lumptectomy:

    http://www.breastcancer.org/treatment/surgery/new_research/20120718.jsp

    Best wishes and good luck with your decision

    Alice 

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  • KimbytheSea
    KimbytheSea Member Posts: 84
    edited August 2012

    That's kind of how I'm leaning Alice. The Her2+ was pretty much all I heard. Hearing "it trumps everything" really helps me make my decision.

    I don't want to spend my life terrified this thing will return.  

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited August 2012

    Kim, I am not going to make any suggestions for you, but will share my own experience. I had lumpectomy initially but was so terrified of rads that I refused, but I did do the chemo and had a negative PET scan a month after finishing chemo. Then 6 months later had recurrence. Went with BMX and have been VERY satisfied that I no longer have to worry about cancer in the other breast. Also I chose no reconstruction because I have had just way too many problems with surgery and couldn't face more procedures, but many women have had good success with reconstruction. Most important is that you follow your own "inner voice" and do what is right for YOU - not necessarily what well-meaning friends and relatives suggest. Best wishes.

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  • KimbytheSea
    KimbytheSea Member Posts: 84
    edited August 2012

    Thanks Linda.

    There do seem to be plenty of suggestions out there. But I am curious to hear about decisions all of you ladies have made.

    My two concerns are: 1) the Her2NU positive status  2) that it's lobular carcinoma.

    Both like to recur. And I like to live my life without worrying about recurrence. 

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