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Topic: Trying to decide about prophylactic mastectomy

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Dec 7, 2019 08:35AM

Kristin1021 wrote:

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!

Dx 8/5/2019, IDC, Left, 5cm, Stage IIIA, Grade 3, 4/10 nodes, ER+/PR-, HER2+ (FISH) Surgery 9/13/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 10/10/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 10/10/2019 Perjeta (pertuzumab) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Hormonal Therapy Radiation Therapy 2/1/2020
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Dec 7, 2019 06:19PM MDRR wrote:

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!

Dx 1/2018, DCIS/IDC, Left, <1cm, Stage IA, 2/7 nodes, ER+/PR-, HER2- Surgery 2/21/2018 Lumpectomy: Left Surgery 3/13/2018 Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy Arimidex (anastrozole)
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Dec 7, 2019 06:22PM MinusTwo wrote:

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

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 12, 2019 10:21AM Kristin1021 wrote:

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

Dx 8/5/2019, IDC, Left, 5cm, Stage IIIA, Grade 3, 4/10 nodes, ER+/PR-, HER2+ (FISH) Surgery 9/13/2019 Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary Chemotherapy 10/10/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 10/10/2019 Perjeta (pertuzumab) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Hormonal Therapy Radiation Therapy 2/1/2020
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Dec 12, 2019 10:55AM dono7392 wrote:

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.

Surgery 10/8/2019 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Dec 12, 2019 11:02AM MBPooch wrote:

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!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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