Deciding on prophylactic mastectomy when triple neg?

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PeggySull
PeggySull Member Posts: 686
edited June 2014 in Triple-Negative Breast Cancer

Hi, i'm new to this group.



I have right breast triple negative, stage 2 IDC and am undergoing dose dense ACT chemo prior to mastectomy. Given the higher rate of recurrence for TN, have many of you opted for a prophylactic mastectomy on the unaffected breast?



How did you make that decision and how do you feel about it?



Did your insurance company balk at paying for the second mastectomy and reconstruction?



I am having a very hard time with chemo side effect management (I just finished 2nd of 4 rounds of AC) and can't imagine going through chemo again should the cancer recur in the other breast.



Any thoughts or feedback would be so appreciated!



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  • Tpettis
    Tpettis Member Posts: 20
    edited December 2012

    I had bilateral prophylactic mastectomy with expanders on Nov. 20th. My insurance didn't balk but they couldn't because I submitted my BRACA1 results as reason for the surgery to the left breast. The stress from mammogram to biopsy was my reason for choosing to remove both. I'm glad I did but ill be honest that the day after when I saw them for the first time I cried. I went to my psychologist after that and got on meds which I found out also help to counter act the neropothy side affects.

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  • Hopex3
    Hopex3 Member Posts: 397
    edited December 2012

    I am having a BMX end of January. I decided right from the get go that I would also have the non cancerous breast taken off. Because of the triple negative status and being positive BRACA, my insurance did not deny me. i could get by with a lumpectomy but i dont want the worry of a reoccurence that i have read about in some of these threads. I'm such a worrier, that for my peace of mind that is my reason for having a BMX. I am having reconstruction at the same time. Not looking forward to that!



    Best of luck to you!

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  • jenjenl
    jenjenl Member Posts: 948
    edited December 2012

    I had plans on removing both but after talking with the docs we left the "good" one on for the time being for 2 reasons: 1) to help with reconstruction and 2) to get to chemo quicker.  Then the plan was to remove the "good" after chemo.  That is still the plan.  I didn't know I was BRCA1+ until after the surgery.  I regret not having both removed at the same time but I am trying to get past that.

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    I am so glad I found this thread.  I too was asking the same question of my doctor and anyone who could answer.  I definitely DO NOT want to go through this again, even though I haven't even started yet.  In my head, I really want to get the BMX if it decreases my chances of a recurrence.  I'm waiting for the BRCA test to come back.  I only did it on Wednesday.  How long do the results take?  Did you all find that chemo worked or is working for you?  I start this week, and I pray it works!!!

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited January 2013

    Lauren - my brca test was sent Nov 14th and I got it back Dec 7th.  They did tell me they had a backlog toward the end of the year..I guess everyone using their Health Savings Accounts?  This was in 2011.  I had a lumpectomy scheduled for 12/13, but cancelled due to my positive results.  BMX in January.  I think one advantage of doing both is matching them is easier, having one natural, one reconstructed, well the natural one might not "hold up" as well.  I'm sure there are arguments on both sides.  As far as the surgery, I don't feel that having both sides done at once is twice "the pain"....certainly doing the surgery twice would be a pain.

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  • LockeKopp
    LockeKopp Member Posts: 66
    edited January 2013

    I'm BRCA 1 positive and that's why I had a BMX.

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  • Lauren15
    Lauren15 Member Posts: 119
    edited January 2013

    Thanks!  I'm still leaning towards the BMX even without a positive BRCA.  I've already had implants once (just because gravity set in).   I can go through that pain again.  Just give me the meds!

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  • Deniset717
    Deniset717 Member Posts: 13
    edited January 2013

    Hi, I had both removed even though I am brca1 and 2 negative.  The results came in after I had surgery as it takes at least 3 weeks for the genetic testing and that is only if it is put through rush rush as usually it is months (used to be a year).  Regardless, I am glad I did both as I have no idea as to the cause and there could very well be another gene that they don't know about.  Had I kept it,  I would be so paranoid with any little change to my remaining breast.  Also, if I opt for reconstruction down the road, I figure I will have 2 looking exactly the same, (not that I really care about that, as it's all about our health and emotional well being but whatever you need to do what is best for you and your state of mind).  I was devasted after surgery and couldn't bear to look, then after a few weeks and a few tears, it does get easier.  I don't cry anymore and I am surprised and pleased with how positive my state of mind is. (my surgery was in November). I hope that you and everyone going through can be as positive as I hear it makes a BIG difference in recovery.  I am so encouraged and inspired by all of the amazing strong women on this site, and wish everyone very best wishes for happiness and good health throughout 2013 and every year forward!

    Hope that helps

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  • Luah
    Luah Member Posts: 1,541
    edited January 2013

    This is excellent reading for any TN. The facts from TN experts... http://www.tnbcfoundation.org/State-of-the-Art Treatment for TNBC.pdf

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