Need advice about getting Surgery-54% lifetime risk

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Anonymous
Anonymous Member Posts: 1,376
Need advice about getting Surgery-54% lifetime risk

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  • adw7374
    adw7374 Member Posts: 8
    edited July 2018

    I'm not sure where to put this post, so hoping someone here wiill read this.

    Short summary. Based on the genetic counselor's calculations at my local oncology center, I have a 54% lifetime risk of developing breast cancer.

    My mom was diagnosed under 50. I had calcifications mid-30's. Several changes last year to them, so I had 2 biopsies which led to an lumpectomy. Radial scar and several papiomas found in the biopsy. I have very dense tissue. Started my period before age 12. Had my kids after 30. Anyway...all of that added up, leads to that number. I've been tested for all genes which have been negative. I have mammograms once a year and MRI"s once a year. Also have had a thermogram which identified me at the very highest risk.

    According to insurance, I more than meet criteria for a mastectomy but my oncologist and surgeon are very reluctant and would rather I do Tamoxifen. My regular OB and primary care doctor thing I should pursue a mastectomy.

    For those have had had one (but not been diagnosed), who wrote the letter to insurance? I'm thinking of getting a second opinion at the competing hospital in town, but not sure whether to see and oncologist or a breast surgeon. (At the other hospital, mine work together in the same office).

    Anyone have thoughts on pursuing this? I know lots of you are in a different situation, but am I overreacting?

    Would love input.


    Thanks so much.

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited July 2018

    Certainly you should get another opinion. Even a third if necessary. Were it me I would put more confidence in what an oncologist or breast surgeon has to recommend than your other docs. They see a lot more cases.

  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2018

    I agree with Winning. I would take my lead from the BS and/or Oncologist. They are the experts in the field not your OB or GP.

    Your stats certainly meet the criteria to have BC according to the researchers but that’s not foolproof. I’ve met women who don’t fit and have gotten BC so it’s not an exact science. Having said that my sister and I both got BC. Our mother had it at age 68. We both fell into the high risk category. Neither one of us had the test to see if we carried the gene.

    I would definitely seek another opinion but again I would follow follow the advice of the doctors who specialize in breast cancer.

    It’s your call though. Whatever you feel makes you less stressed about it. I had a lumpectomy. My sister had a MX. We had 2 different kinds of BC.

    Good luck whatever you decide.

    Diane
  • getnfroggy36
    getnfroggy36 Member Posts: 2
    edited July 2018

    Based on my test results, I'm at the over 50% maker too. I'm going to go for the double mastectomy and not looking back. I have peace with this because GOD IS WITH ME.. even if HE doesn't take us out of the situation HE will CERTAINLY bring us through it.. ALL YOU HAVE TO DO IS ASK HIM..you can count on HIM!! You can do all things through Christ who strengthens us...remember that and you'll be fine. My surgery is in 3 to 4 weeks. Sure, I'm scared.. but mostly about the pain that I will have after the procedure. I have made peace with my decision and you will have to make a decision that you are peaceful with. If I were you, I would go for the double mastectomy based on your personal history. Breast are really small thing to lose in order to keep your life. Think about how lucky you are and how other people are paralyzed on one side or all of their bodies. Or are missing arms or legs, or any other sort of horrific thing like that. I feel lucky just to have breast cancer and that's the way I've decided to look at it. Choose what's best for you and remember that God is with you. Good luck and take care.



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