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Considering prophylactic mastectomy

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RunningLibs
RunningLibs Member Posts: 1
edited August 2022 in High Risk for Breast Cancer

Here's my history:

November 2018: ADH confirmed via biopsy. ALH discovered in same breast during excision. In the last two years, I have had three more biopsies (thankfully, all benign), the most recent last week for clustered microcalcifications in the other breast. Started low-dose Tamoxifen in October 2021. Had complete hysterectomy in January 2022 due to skyrocketing CA125 and a mass on one ovary. No gene mutations found. My lifetime risk prior to this last biopsy was 64%.

Mentally, my husband and I are exhausted. Two breast biopsies and the ovarian cancer scare seven months has worn us out. We can't keep living like this.

For those who have had a prophylactic mastectomy, how did you finally come to that decision? Thanks!

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  • moderators
    moderators Posts: 8,176
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    Hi runninglibs,

    We are sorry to hear about the recent concerns and of course, exhaustion that it brings. We wanted to respond to this post to boost it towards the top in hopes more members can view and respond to you and provide helpful feedback.

    Until then, you may find this article on prophylactic mastectomy to be helpful. https://www.breastcancer.org/treatment/surgery/mas...

    - The Mods

  • beginagain22
    beginagain22 Member Posts: 100
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    Hi runninglibs,

    I’m sorry to hear about the issues you’ve been having, it is so stressful. I am 48 and was diagnosed with IDC in February. It was fairly small and I intended to have a lumpectomy. I did have dense breast tissue that made reading mammograms tough. I was offered genetic testing since I am under 50. It came back with a genetic mutation so I decided to have a double mastectomy and remove the healthy breast as well. I will have a hysterectomy and will remove ovaries later this month. I decided to have an aesthetic flat closure without reconstruction after a lot of soul searching. There are lots of options out there if you do want to reconstruct tho. Lots of support here. Best of luck to you

  • maryscout
    maryscout Member Posts: 10
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    Hi Runninglibs,

    I had a really similar profile that you do. ADH, macrocalcifications, ADL found. I've had cancer before (not breast), so I knew that I wasn't looking forward to the extra screenings, Tamoxifen, biopsies, etc. I started looking into the idea of prophylactic mastectomy here, and I broadened my search to learn more about diep flap surgery and where there are centers of excellence on that front. I talked with lots of friends and with former patients, and ultimately decided to go to the New Orleans breast center. It's almost 3 years to the day since I had it done, and I couldn't be more pleased with the results and the peace of mind. Everyone is different and has different and valid approaches for them. For me, this was an awesome decision. DM me if you ever want to talk.

    Yours,

    Mary

  • K-Gobby
    K-Gobby Member Posts: 144
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    thank you for posting. I have Brca2, so rather then waiting for cancer to show in my other breast, I said remove it.

    Ovarian cancer scare? I am 61. They took fallopian tubes and ovaries.

    A blood clot in my keg after my 1st sugery slowed my 2nd breast surgery to be removed, but I said thanks God for giving me extra time to say goodbye.

  • janewhite
    janewhite Member Posts: 49
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    I had a medically necessary mastectomy last year (multiple sites of DICS and failed lumpectomy), and I just had the other breast removed prophylactically. And the repeated screenings are a big part of the reason I'm happy with my choice. I don't want to endure mammograms, callbacks and biopsies for the next however many years, even if I never wind up with cancer. I had one last mammogram a few weeks before the surgery, and of COURSE I needed follow-up scans.

    No more. No more breast screenings. It's liberating.

  • K-Gobby
    K-Gobby Member Posts: 144
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    Janewhite.

    I never did a mammogram until the one in July of 2021. My 2nd was a couple weeks ago. It was to be before my surgery on May 31st. This was to remove the good breast. Today, down because of the blood clot, I love too it was my last mammogram. Months before the likely new date for sugery. As a women said to me after my left side mastectomy, we only have two!!! What we say at the check out of our Dr's office!


  • farmerlucy
    farmerlucy Member Posts: 596
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    I had a PBM in Feb 2012 due to family history and ALH, ADH, 50% lifetime risk. Idc was found in the final pathology. Obviously I made a good choice. I’m ten years out now and haven’t regretted the surgery for a millisecond.

  • deniseml
    deniseml Member Posts: 68
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    I had lt. mastectomy in January, 2021 and had planned to have rt. One in April. Family crisis delayed that. Am going forward with PMX. September 1st. Call backs after mammogram this past month has helped me see that this is the right decision for me! I will not have reconstruction. Just a personal decision . 2 years since first diagnosed with NED since initial surgery. I am thankful I have had time to come to my decisions and am certain this is right for me.

  • NatureYogi
    NatureYogi Member Posts: 135
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    Hello all, I am moving forward with a Prophylactic mastectomy soon. I have consult August 15 with breast surgeon. I originally wanted both breasts removed last year in July, but surgeon said since I had Triple Negative IBC I needed to move to radiation soon after surgery. So after many tears I gave in. Fast forward a year later, my Oncologist said I could have my port removed. So I plan on having this done at the same time since they are both on the same side. Then to really validate my plan, I had mammogram and the results were "Follow up with ultrasound 6 months due to dense breast tissue grade C". I've managed fine with one breast and a "pillow" up to now, but it is time to get the left breast removed so I don't have to go through this every 6 months to a year. I'm going for flat closure like the right side as well.