Mascetomy vs. Lupectomy and BRACA1+

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Issymom
Issymom Member Posts: 264
edited June 2014 in High Risk for Breast Cancer

I went in for my annual Mammogram and after having a core biopsy, I was diagnosed with IDC.  We went to see the BS and thought he would say that I "barely" had cancer as the tumor was only 7mm and that after a lumpectomy and radiation, I would be done.  Unfortunately, I am triple negative and the cancer has a high mitotic rate so "wants to be big".  I was planning to have a lumpectomy, chemo, and then radiation.  We also got talking about whether there was any family history of BC. My paternal grandmother had BC and died from it.  The characteristics of my cancer and this little history was enough to suggest BRACA testing, which I did. We also dug into my family history and that my paternal great-grandmother and 2 of her daughters had ovarian cancer, the other (my grandmother) had BC.  My dad has 2 brothers (one with postrate Cancer) and no sisters.  This week I found out I am BRACA1+.  Now I am strongly considering a bilateral mascetomy vs. the lumpectomy. I don't want my breasts to be my enemy but will I regret this decision.  Most post seem to suggest people are happy with their decision to do BM.  Meeting with the BS on Wednesday to schedule surgery, I have to decide which one.

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  • LISAMG
    LISAMG Member Posts: 639
    edited November 2009

    Issymom,

    Sorry to hear of your BRCA1 status and your diagnosis. However, knowledge is power and you have been give this information of a genetic predisposition where you can take preventative action to reduce your risk even further. Only you can decide what is best for YOU. Having TNBC with a high grade tumor and BRCA1, the chances of a new primary and/or recurrence are high. Did you speak with a certified genetic counselor about your results? Do you want reconstruction? You will need to consider ovarian cancer risk reduction strategies as well. Deep breaths and one step at a time. This is all so new and overwhelming too.  Gather all the facts and seek more than one opinion to make a fully informed decision.

    Please visit the message boards of FORCE, an organization devoted to hereditary breast/ovarian cancers. You will find many women in your shoes and tons of support. Go to www.facingourrisk.org. We also have local outreach groups all over the country where you can find support in your area. How old are you and where are you located?  Best wishes!

    Lisa, FORCE Long Island Outreach Coordinator

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  • Issymom
    Issymom Member Posts: 264
    edited November 2009

    LISAMG,

    I am meeting with a genetic counselor on December 1st.  I am 46 have 2 kids and so I definately want to have my ovaries removed once I take care of the cancer I have now.  It is interesting because I have no issue with removing them.  In my opinion the risk is too high to keep them in and the treatment is not as good as with BC.  Breasts seem much more personal/visual and so it is harder to imagine not having them.  If I had a BM, I would most definately have reconstruction ( I am meeting with the PS on Monday).

     I went to the FORCE website and thought it was great.  It laid out the fact/statistics very well.  It truly does come down to a personal choice.  Do you want to be on high surveillance and who will you handle the tests every 6mos vs. a masectomy and all that is associated with that.

    I am the first of ANY my direct friends or family with cancer.  I had no idea there were these networks of women with breast cancer. I am so appreciative of everyone's perspective and experiences.

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited November 2009

    Issymom

    I sent you a PM with questions for you to take to the PS office.

    Hope they help

    Ann

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Dear IssyMom,

    You are BRCA1+ have 2 kids. To me, it almost seems like a no-brainer to get a bilateral mastectomy but I think it must not be that easy when you are the patient.

    The only advice I can offer is to take your time, research your doctors and your options. A couple of weeks here or there should not make a material negative difference and could make a difference to get your the desired and satisfactory outcome. Bilateral reconstructions are very successful and offer excellent cosmetic results. I'd like to think you'd end up with perky boobs that may not even need a bra!

    Oopheroectomy is also recommended with BRCA1+. At 46 years of age you are close to menopause and should get it done...But this is another personal decision.,...

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  • Issymom
    Issymom Member Posts: 264
    edited November 2009

    unklezwifeonty,

    Thanks for the reply.  At times it seems like a no-brainer then I wonder if I am being rash with this decision.  I really have heard very little to make me think this is not the best decision.  I have mentally made the decision to do a bi-lateral mx bust have not told me doctor ( I have an appt on Wednesday).  If I don't have major second thoughts then I will be comfortable with the decision.  I mentioned to me daughter today that based on more information they have found about my cancer, I may have to have both breasts removed ( she is 12 and doesn't need to be burdened with the knowledge of the gene mutation).  She looked at me with wide eyes and said "so you will be "boobliless".  I thought that was such a great word.  I told her that I would get new ones!

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  • BMac
    BMac Member Posts: 650
    edited November 2009

    Well, I'm someone who didn't have the bilat mast in time.  I had ovarian 7 years ago, 10 months after my mother died of it.  My sister had bc in 1992 so when my mother was diagnosed my sisters and I started attending a high risk ovarian cancer clinic.

    We all had the genetic testing upon my diagnosis and we are all BRCA1.  After treatments I started attending a high risk bc clinic.  Prophylactic mast was mentioned but it was suggested that I determine my prognosis (from stage III ovarian) the thinking being why go through that if my time was limited.

    Well, apparently, where ovarian is concerned, I've beat the odds.  The first doctor left the hospital and I asked the next doctor about the masts but she didn't seem to think it was necessary.  Two years ago I was diagnosed with bc.  I sure wish I'd had the bilat mast then and avoided getting cancer a second time.

    I would also highly recommend a complete hysterectomy.  An ounce of prevention is worth a pound of cure.

    Of course you have to do what's best for you but my story may help you with your decision.  I really didn't think it would happen to me a second time.  Good luck with your decsion.

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  • Issymom
    Issymom Member Posts: 264
    edited November 2009

    I met with the BS yesterday, I will have a Bilateral Mastectomy on Dec 4th.  I also found out yesterday that a friend was diagnosed with Ovarian Cancer.  I did some research on the statistics, how few are caught early, etc... and there is no question in my mind about having my ovaries (and Fallopian tubes) removed.  The thing that I need to figure out is whether I want to have a complete hysterectomy.  I will go down that path when I am through this surgery.

     Happy Thanksgiving to all.  Though this is difficult, I have a lot to be thankful for.

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  • jberni
    jberni Member Posts: 5
    edited December 2009

    I had a tram flap done in 2000 and reconstruction and just this year 2009 had other breast removed.  Have an implant.  If I had it to do over again I would do the bilateral with reconstruction with implants.  It will be traumatic at first but in the end you will save yourself from worrying if you will develop cancer in the breast that is not now involved.

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