Trying to decide about prophylactic mastectomy

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Kristin1021
Kristin1021 Member Posts: 6
edited February 2020 in Surgery - Before, During, and After

I also posted this in the High Risk forum and received some helpful input. The Moderators suggested I post in this forum, too. I really appreciate hearing from others about their experiences and insights!

As part of my breast cancer follow up, my oncologist had me do genetic testing. I don't have BRCA mutations, but I tested positive for MSH6 mutation, which is one of the genes associated with Lynch syndrome and increased risk of colon, uterine, ovarian cancers among others. I am having a hysterectomy and oophorectomy in the spring, but recently came across a 2018 study that associates this mutation with a 31% increased risk for breast cancer. The study was the first to look at each of the Lynch genes individually for their association with breast cancer, but it was a small study with some limitations and therefore the body of evidence is suggestive but not strong at this point.

I have consulted with my surgeon and a plastic surgeon about prophylactic bilateral mastectomy for risk reduction. Both advised it's my decision, although they also both agreed the partial mastectomy I had for the IDC and current adjuvant treatment plan are appropriate course of action.

When I was initially diagnosed with stage I DCIS that turned out to be stage IIIa IDC, I chose partial mastectomy because I could not bear the idea of numbness in my breast! I also have a close relative that had a lot of scarring, pain and multiple surgeries following her mastectomy and reconstruction. However, I am really concerned about the increased risk associated with MSH6. I haven't discussed with my oncologist yet, but plan to when I see her next week.

I am really interested in knowing what others who have had bilateral mastectomy feel about their decision, what was important to them in their choice, and what their thoughts are on the numbness. Is it distractingly uncomfortable, get in the way of daily activities, constant? I know living is the most important thing, but the numbness has been the major issue for me as I am thinking about this decision. I was told it feels like scratching your leg when it's fallen asleep. Thanks in advance for any and all input!

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  • MDRR
    MDRR Member Posts: 133
    edited December 2019

    Hi Kristin1021

    I had a bilateral mastectomy in March, 2018 - without reconstruction. My recovery was actually really pretty easy. I was mainly interested in getting 'back in the game' without any additional surgery. My chest is numb, but I have not really noticed it. I have not had any tingling or anything else that feels uncomfortable. Like all of this stuff, it's probably different for every person. But my own experience has been just fine, complete and easy recovery, and no issues with the numbness.

    Best of luck!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    I've always been pleased I chose BMX. Never had itching & numbness hasn't bothered me.

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  • Kristin1021
    Kristin1021 Member Posts: 6
    edited December 2019

    thank you for your input! I really appreciate hearing about your experiences as I make this decision.

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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    I had a bilateral mastectomy, with one side being preventative because it had a number of "hot spots." I was motivated by the risk reduction (perceived) and not having to do intensive screening going forward. I regret this decision. I've had trouble with that side (cording, pain, swelling) and those side effects are tough to endure knowing that I didn't have to do it. The numbness doesn't bother me though but, in hindsight, I would have preferred to keep my natural breast tissue. But I made my decision after speaking with several women who a bilateral mastectomy (preventative on one side) was the best decision of their lives, so it can go either way. Best of luck in your decision.

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  • MBPooch
    MBPooch Member Posts: 229
    edited December 2019

    I had a BMX two years ago at 45 years old with direct to implant and am so happy I made that decision. The recovery was fairly easy. I was diligent about the exercises and was only down and out for about a week then back to doing most things. I hosted Xmas Eve and went up North on a New Years Eve vacation. I don't really have numbness, never had itching and most days forget that I've even gone through this experience. Best of luck in what you decide!

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  • Accarpenter
    Accarpenter Member Posts: 32
    edited February 2020

    I have an extensive history of breast cancer in my family. I had my first mammogram that showed fiveocyatoc breasts, several cysts, and a small benign lump in a lymph node. It was very painful and all physicians told me I needed no treatment. I previously had a total hysterectomy 10 years before to help decrease my cancer risk and other female issues. Despite that I was still somewhere between 30% of higher risk for breast cancer even though I never used hormone replacement therapy.

    The mastectomy was an easy decision for me. I had a hard time finding a physician to get in board even though my insurance approved the surgery immediately. I decided to have the DIEP flap as I didn’t want saline implants and wanted more natural breasts. It was a great decision. I never felt any pain after surgery. I was also fortunate that I was able to have a skin and nipple soaring mastectomy. I am not finished yet. I hopefully have the flaps trimmed, a breast lift, and some fat grafting as I want to be a little larger. I never had any issues about “losing my breasts” since I woke up the same size with some stirches

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  • T-Dahl
    T-Dahl Member Posts: 20
    edited February 2020

    I just had a bilateral mastectomy on January 16th. I had a tumor and dcis on my left side and about a week before my surgery they found a suspicious mark on my right side. It didn’t matter to me about the right, I had already decided to have both breasts removed. The only “downside” (if that’s what you wanna call it) was my surgeon had to remove lymph nodes from the right to make sure it hadn’t spread. Turns out the tumor was benign and my nodes were clear on both sides. I won’t need radiation or chemo. My margins were clear and the IDC I had was twice as large as they had originally thought. I am still right in the middle of my reconstruction journey so I can speak from the inside of this..... it was the hardest decision to make but once I realized that this would all be behind me, there was no turning back! It is 💯 the best decision I made for myself. The expansion phase sucks. Plain and simple. It’s not painful, I feel like it just limits me on what I can do. As far as my mastectomy I feel like I am recovered fully from that. So if you want an easier recovery I suggest skipping the implants if you are okay going flat I was torn as to what to do but ultimately felt like if I didn’t at least attempt reconstruction I would have regretted it but I also have no problem pulling the plug and having them removed if things start not working for me. This is just my experience and every one is different just make sure whichever route you take you are 💯 comfortable because having the right attitude helps tremendously! Good luck!

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  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 77
    edited February 2020

    I had a bilateral mastectomy in December and am so glad I did. I knew I had a small invasive tumor, but I have extremely dense breasts and I feel they missed it prior. I have had many call backs and the stress was too much. After my surgery, my BS found both LCIS and DCIS as well that had not shown in 5 imaging tests a month prior. He said I made the right decision. The surgery and expansion process are not fun, but I get my implants in less than two weeks and am feeling it was well worth it. Good luck

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  • Floral
    Floral Member Posts: 41
    edited February 2020

    I had a BMX in January, the right side prophylactic. I currently have TEs which don’t bother me all that much. For me it was an easy decision. I have very dense breasts and, like the previous poster, feel like this 2.5cm tumor has been there for awhile. I was religious about mammos but I wind up with this plus a positive node. No way was I going to risk a new primary upping my chance for recurrence, or increased worry every year on top of recurrence worry.

    Plus, there was no way having two radically different feeling sides wasn’t going to drive me straight up the wall. Recovery hasn’t been bad since the drains came out, and frankly, so far the scarring is minimal, with the incision following natural body lines. I read that some women feel “mutilated,” but that is not true for me. And my nippleless fake breasts don’t look as weird as I thought they would. If I were younger I could wear a bikini without a problem, and any lingerie except a complete see-through would not show the surgery. Other women’s mileage may vary

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