Should I have a preventive mastectomy?

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danna26
danna26 Member Posts: 3
edited June 2014 in Triple-Negative Breast Cancer

I was diagnosed with Triple Negative breast cancer in Dec. 2009. I had a lumpectomy, 8 rounds of chemo and 30 radiation treatments. I am a very active 48 year old and did well through all the treatments.

I go to the oncologist every three months and this past visit, last week, we found a lump. (this also happened a few months ago too without the needle aspiration or biopsy) Long story short...mammogram, ultrasound, needle aspiration and then a biopsy. The results came back benign but that was the longest and most frightening few days waiting for the results. I am so fearful of the cancer returning, especially with the triple negative diagnosis. My doctor has recommended surgery to remove the lump (cyst).

My question is...do I have another lumpectomy or go ahead and have a mastecomy with reconstrution surgery? I welcome your input.

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited May 2011

    I can't speak for triple neg., but I had it two times.  First time DCIS, no nodes, excellent prognosis of never seeing it again.  5 years of tamoxifen, FF to 7 years out, new primary, mtxmy, no node again, chemo as I could not do rads again.

    I am going for a prophy just as soon as we can afford it.  For me, the yearly scans and the attendent anxiety is too much out of my life.

    Why not get a second and even a third opinion from a breast surgeon?  I had two and they both thought that it was a good idea.  (I am BRAC negative, ER+ also)

    Recon is not an easy road, as often it needs revisions.  But the end result if generally very lovely.  You do lose some sensation and some women do not get this back.  I did ;).

    A member here called Tim Tam runs out photo forum where you can see pix of recons...if you PM her, she can get you there to see for yourself

    good luck!

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  • NSWTD
    NSWTD Member Posts: 210
    edited May 2011

    some women do prophy mx, it is so personal.  As I read your post, I can guess as to where you are at.  I just could not bring myself to remove healthy tissue.  There are some days I worry about another cancer popping up ( I had DCIS uni mast in March 2010), but my chance is not much more than any other woman.  

     Good luck no matter what you choose.  

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  • jessicav
    jessicav Member Posts: 161
    edited May 2011

    Mastectomy is a big deal. Some women do well with reconstruction, some don't. Very personal decision. I did a prophylactic (sp?) on one side and sometimes regret not even still having one breast. Reconstruction can have complications causing other problems.

    Search the boards here. There is great info shared on this topic.  No easy answer on this one..

    Good luck.. 

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  • tracie23
    tracie23 Member Posts: 598
    edited May 2011

    Hi Danna26

    I ended up having a double mx due to the fact that my mother had bc 10yrs apart and so did one of her sisters. I am also BRCA2 + and TN so I didn't want to deal with this again. My Aunt the middle sister at 68 BRCA 1 + just had preventative mx she was here at xmas and saw how sick I was with the chemo and said no way to ever having to have chemo she had an ooph as well . I am also having an ooph in June, I do understand what NSWTD is saying about removing healthy tissue but I don't ever want to have to go through this again my boobs are so not worth my health. This is one journey I never want to experience ever again.....

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  • danna26
    danna26 Member Posts: 3
    edited May 2011

    Thanks ladies for your insight. I agree about not wanting to remove healthy breast tissue but when I was diagnosed with breast cancer, I thought I had healthy breast tissue. :) I suppose I will need to continue my research and praying for wisdom!

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    Danna...I have heard from a couple ladies on here that TN chance of reocurrence to the breast is only 5%..(please don't quote me on that..ask your onc)...our biggest fear is mets....maybe not so much to the breast.

    That being said....IF I were having issues with my breasts..benign or not..I would probably have a double mx...maybe...It is a HUGE decision.

    My lumpectomy was really nothing at all to have done..had it on a Friday..back to work on Monday...a masectomy..you can't do that..

    Just weigh your options.

    I just went through a mammo, and an appt. with my onc and bs this week..everything was fine...I dunno..I think you would still probably freak even with a masectomy...

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  • Luah
    Luah Member Posts: 1,541
    edited May 2011

    Very good point, Titan. This study presented at ASCO with a 4.6 year follow-up showed RofR in TN was 9.9% compared with 1.3% in ER+, but two-thirds of those recurrences were distant; local accounted for 3.3%    http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=32171

    So danna26, to my mind, it's worth weighing the odds (versus the potential peace of mind benefits) and talking to additional doctors for opinions. As my onc said yesterday, just because you've had BC doesn't mean you won't get all those aches and pains and, yes, cysts that any "normal" woman would get; you just have to be vigilent. Despite that, every woman has to decide what level of anxiety they can live with... (realizing that Mx doesn't eradicate it).

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  • epgnyc
    epgnyc Member Posts: 101
    edited May 2011

    I can really relate to your question, Danna26.  This is such a huge issue.  I was first diagnosed with TNBC in 2002.  I had a lumpectomy with a re-excision, chemo and radiation.  Dial forward 9 years and in February 2011 I was once again diagnosed with TNBC in the same breast.  But like many of you out there, over the years I've played the game "what would I do if...."  My question had often been what would I do if I were again diagnosed with breast cancer?  Would I have a mastectomy this time if it was in the other breast, and if it was in the same breast would I have both a mastectomy and a prophelactic mastectomy?  I decided to have a bi-lateral mastectomy, but several things went into my decision.  This time around I was 63 at diagnosis.  I also have a long history of biopsies (a total of 3 incisional biopsies, 3 needle biopsies and a lumpectomy prior to the mastectomies.  Prior to the cancer diagnosis in Feb. my most recent biopsy (benign) was in the opposite breast.  Frankly I just couldn't bear the thought of possibly getting breast cancer a third time and having to deal with the whole chemo thing.  I am soooo happy that I decided to have the bi-lateral mastectomy.  It takes a whole layer of anxiety away from me.  I have remained friends for the past 9 years with two women I was in a support group with the first time around.  They were both younger than me (45 and 46 at the time of diagnosis) and both had mastectomies at the time.  They both recently told me that they wish now they had gone ahead and had a bi-laterial instead since they worry constantly about getting it again.  I should mention here that I opted not to do any reconstruction at all.  I was unabel to have implants because of the mess the first radiation made of my skin (my plastic surgeon said there was a likelihood of over a 50% fail rate with implants).  I could later have opted to have a DIEP flap reconstruction  (with about 13 hours of additional surgery) but frankly I just couldn't face any more surgery.  I am very happy with my decision.  I love my prosthetic breast forms and pretty bras and find them surprisingly comfortable.  Sometimes on a weekend I'll just go flat with a lacy undershirt.  Frankly however I know that my age and the fact that I'm single and don't have to factor in a man's feelings, have played a big part in my decision.  If I'd been in my 40's or even perhaps my 50's I might have made a different decision re: reconstruction.  But everyone needs to make up their mind on this question.  I just wanted you to know that I am very, very happy with my decision.

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  • danna26
    danna26 Member Posts: 3
    edited May 2011

    Thank you epgnyc! You were able to express how I have been feeling. Yesterday I went to my onc visit to discuss my options. He said that the radiologist did not like the look of the cyst and thought it would  be in my best interest to remove it. So he recommended the lump in my breast be removed and that mx at this time would be "overkill". Those were the words that I used when asking him if he believed it would be "overkill" getting a mx at this point.  He was very sensitive to my concerns/fears and added that this lump might be an isolated one. If it happens again, he said that it would not be unreasonable to consider a double mx.  That gave me great comfort, since my regular onc appt are three months apart. I have no doubt that IF this happens again, I will schedule a bilateral mx surgery. But for now, my breast will look more like swiss cheese!  LOL

    Thank you all for your support and input.  I wish I would have discovered this site last year when I was going through treatment and had so many questions. 

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  • dawn31337
    dawn31337 Member Posts: 307
    edited May 2011

    I am also TN and did do the BLM.  It was my first instinct.   My mother and cousin both had BC, and I make 100% of the women in my family.  I flip-flopped a bit, but once I started reading about TNBC, my mind was made up.  I was also never happy with my small breasts.  I also decided I never want to go through this again, and felt BLM would give me peace of mind.  I am happy with my decision, and my reconstruction (with implants) turned out great!!

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    Glad things are going well for you Dawn!  And that you are happy (and comfortable) with your choice....I think Danna..that is the main thing...to do what you are comfortable with

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