HER2+ - uni or bi-lat opinions

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1marmalade1
1marmalade1 Member Posts: 308

I have a month or so to decide whether I have a uni- or a bi-lat mx.  I have yet to meet again with surgeon & onc to discuss.  I would like to know - how many of you Her2+ ladies had unis and bi-lats?  Were there any specific reasons, because of HER2+ status, why you made that choice?

Comments

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010
    I had a lumpectomy due to the size of the tumour. I was told a mastectomy would remove the need for radiation - that's all. The HER2 status was not a factor to consider a mastectomy. Even if I had positive nodes, I wouldn't have had further surgery. I know others with a few positive nodes and were HER2 who have only had a lumpectomy.
  • Boo307
    Boo307 Member Posts: 222
    edited March 2010

    Suepen is right.  The chief risk with HER+ cancer is that it has already sent out micro cells into your system and has a much greater chance of metasizing in the future without chemo and Herceptin treatment now. 

    I had bilateral cancer and had bilateral lumpectomies; IDC on one side and DCIS on the other.  If the cancer returns locally it can be effectively treated locally with a mastectomy, but there is only about a 5% chance of that happening.

    My risk of the cancer metasitizing is about 30% after all chemo and Herceptin, so that is what I concern myself with.  To do what I can now I am lowering my weight and hope in a year or two to me of normal weight and trying to exercise vigorously (break a sweat) every day.  These are all factors that reduce the risk of recurrence.

    Do what you feel most comfortable with about the local control, lumpectomy or mastectomy, and do everything possible to defeat the cancer from metastizing.

    Boo307

  • momofthree2011
    momofthree2011 Member Posts: 39
    edited March 2010

     Hello,

    I had a bi-lateral mastectomy without reconstruction. I know of several women who had lumpectomys and the cancer came back or a new cancer in the other breast. I just thought I would tackle this disease the best I can after going through a lumpectomy twice. I didnt have clear margins. I had to decide on either going in a third time, having a unilateral or bi-lateral or just do radiation. It was a tough decision but  I decided on the bi-lateral. i'm happy with my decision. At times I do miss my breasts but I didn't want to be  lop- sided and if you have reconstruction the outcome is better if you had a bi-lateral. I probably will have breast reconstruction later on.

    I know someone who had a lumpectomy and then cancer came back then she had a uni-lateral several years ago and she had asked the surgeon if she can have a bi-lateral and he said she didn't need to remove her other breast and she just found out that now she has a new cancer in that breast. 

    Best of luck to you.  

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010

    Boo: My onc said there was a 23% chance of recurrence/spread and that the chemo and herceptin would halve that, which brings it back to say 11%.

    Sue

  • Boo307
    Boo307 Member Posts: 222
    edited March 2010

    Suspen, My 30% chance is based on my tumor size, grade, being hormone negative, and no node involvement and of course HER+.  It is reduced to 15% for me with Herceptin.  I misspoke.

    I suspect your pathology is a little better than mine and so you have a lower chance.  Best wishes and I LOVE AUSTRALIA!  Was there a few years ago and had a great time.

    Boo

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2010

    Boo: Maybe being hormone receptive does mean I might have a better chance who knows. The fact I was such a rare type is what really upsets me. I had Pleomorphic Lobular which is rearely HER2 which puts me in about .0013% of bc patients. Mine was 11mm, how big was yours?

    Sue

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited March 2010

    I had a unilateral.  My tumor was 3.4 with multifocal disease, so I had no choice but to have a mast. However, I didn't want to remove a healthy breast.  You lose all your feeling in your chest and I chose sensation over a perfect matching reconstruction. (I'm in the TE expander process now.) 

    I intend to hug any future grandchildren to my breast and since I can't have any kind of reconstruction but TE, the choice was easy for me.

    Good luck.

  • my2boys
    my2boys Member Posts: 339
    edited March 2010

    I had a bi-lat mastectomy with reconstruction.  My surgeon said I could do a lumpectomy with rads or a single mast.  I told him that I wanted to remove both breasts and be done with it. 

    Turns out that when they removed the "healthy" breast there was a very early stage LCIS in it.  Mammo, MRI and sonogram showed nothing, so this was the only way it was caught.  I guess somebody upstairs was looking out for me.

    It is a very personal decision.....take the time to think it through.

  • pmm10414
    pmm10414 Member Posts: 18
    edited March 2010

    I had a bilateral masectomy because I was Stage III and I found my tumor after getting a mammogram less than 5 months earlier that was supposedly clear.  I decided rather than chance having to go through this again I would eliminate at least one place the cancer could come back.  The toughest thing was/is the expanders.  I get my permanent implants in May.  It is tough sometimes because all you want is to be "normal" which will never happen.  Hence, you have to make the decision of what you can live with and move on.  I want to see my grandchildren so I took the most drastic measures with my treatment.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Hi everyone.  I was diagnosed with left breast DCIS on 2/3 and had a lumpectomy on 3/9.  My path report came back with an IDC dx with HER2+++ results.  I meet with the oncologist on Wednesday and I presume will be starting chemo & Herceptin soon then have radiation.

    I had the BRCA study done because my mother had breast cancer at 36 and I wanted to know if I carried the gene as I have a 25 year old daughter.  Luckily, I was negative, but was planning on have a bilateral mx if it was positive.

    Just wanted to thank you all for being here.  I was really freaking out last week after getting my path report.  At first I was happy I wouldn't have to take Tamoxifen then started getting creeped out when researching HER2 online.  You are all my heroes and have relieved me greatly.

    As a side note, I misread my path report re tumor size - in my original dx signature I had the size of the specimen and not the tumor.  My bad. : ) Sowee.

    (  o  ) (  x  ) with steri strips still on : )

  • lexislove
    lexislove Member Posts: 2,645
    edited March 2010

    I did a uni lateral.

    The Her2 factor didn't play a roll in my decision. Both my onc and surgeon said "no". I also tested BRCA - for bothe genes. No family history and was diagnosed with IDC.

    If I was BRCA+, Triple -, or diagnosed with ILC, then yes....I would have removed both.

  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited May 2010

    I am planning on a BLM after chemo - I am ER+ @ 100%, PR+ @ 50%, and HER2+++.  Chance of local recurrance is 25 - 33%.  Pretty high.  Chance of develping new or recurrant cancer in my other breast is also high.  I cannot control mets, but I can control this factor.

  • LouLou40
    LouLou40 Member Posts: 180
    edited May 2010

    I had multifocal IDC, node pos, 2 tumors 2.1 cm and 1.5cm and I had a lumpectomy and Rads.

    The Her2 part of my path did not come into my surgical decision to have a mastectomy or lumpectomy, my BS recommended the lumpectomy as the tumors were in the same quadrant of my breast, so that's what I went with.

    I was dx at 39, no risk factors for BC, and I'm happy to have just had the lumpectomy and not have to worry about reconstruction.

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