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Topic: Trying to decide about prophylactic bilateral mastectomy

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Dec 6, 2019 03:51PM

Kristin1021 wrote:

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 6, 2019 04:35PM Spookiesmom wrote:

I had bmx 7 years ago, no recon. I had very little pain from the surgery, the drains were a huge pain in the rear. I told my BS I wanted them gone, didn’t want to do this again. But cancer can be sneaky, and came back in the lymph nodes on the other side this year.

I am still flat, no problems there. I do get called sir sometimes, don’t ever wear foobs. I don’t notice numbness, jut go about my day normally.

It’s a tough decision, one only you can make and be comfortable with.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Dec 6, 2019 07:16PM OnTarget wrote:

I had a BMX in May this year and the exchange in Nov. At this point in time, the numbness doesn't really bother me too much. I can feel if they are impacted- I assume it is feeling in my muscles under them, but I can't feel most of the breast skin.

It is a bummer to have no nipples and no sensation, but it isn't nearly as important to me as my health. I wanted to be aggressive with my cancer, and I'm very happy with my choice so far.

My arms need to be stretched frequently, and I'm not sure if it is permanent yet at this point.

My breasts get cold if the room is cold, but I don't notice unless I touch them. Not a big deal for me.

Mostly minor issues really.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 7, 2019 09:26AM Kristin1021 wrote:

thank you for sharing this with me. I have a coworker who decided against reconstruction over 15 years ago and she is also really happy with her decision. It’s another option for me to consider.

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 09:29AM Kristin1021 wrote:

thank OnTarget. I agree health is the most important thing and glad to hear you are happy with your decision. I appreciate your 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 8, 2019 05:56AM Yogatyme wrote:

I had BMX in Aug despite having small tumor and stage 1A b/c I have BRCA1 and it puts recurrence risk at 85% for both breasts. Once I recovered, my activity level went back to normal with no problems. I do have numbness and was told I probably always will. I didn’t have reconstruction, so I can’t speak to that. I have no regrets about either decision, but I wonder what I would have decided if I was younger. I can appreciate your concerns about numbness and i think you are wise to be asking these questions.I hope you’re able to come to a good decision for yourself.

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Dec 8, 2019 08:49AM ProudMom_Wife wrote:

I opted for BMX. No regrets at all... Zero, None, Nada. Even though I was BRCA negative too many of my relatives have one type of cancer or another (breast, ovarian, skin, throat, etc...) that I just did not want to deal with it anymore. Of the relatives with breast cancer, only one of them has not had a recurrence. All others had it recur either in the same breast or the other breast or had a new/different type in the other breast. I know I still have a risk of a distant recurrence, or of a recurrence in the teeny tiny amount of breast tissue which might not have been removed. But it has brought me piece of mind.

I did reconstruct. My silver lining is that I downsized from a "D" to a "A/B" cup. Have not put on a bra in over 6 years and am loving it!!! I really hated wearing bras. It is so nice to go for a bike ride, dancing, running, hiking, etc... and not be giggling all over the place. I have saline implants, so I am going to be needing to replace them in a few years. Do not know if I will deconstruct or do another round with saline implants. Depends on where I am in life at that time.

The numbness did bother me at first, missed the sensations and feeling. However as time has passed that does not bother me anymore. Sometimes the implants shift on me while I am sleeping because I sleep on my sides now (not a back sleeper at all). The main reason why I might deconstruct is because I really miss sleeping on my stomach which is my comfortable sleeping position. Oh, I do have a difficult time finding a bathing suit top which fits well and stays put, but my modesty is almost non-existent now and I will go topless when swimming or wear a rash guard. If I deconstruct I have thought about getting tattoos, and will probably go topless even more to show them off :)

Dx 10/1/2010, IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2- Surgery 11/17/2010 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/5/2011 AC + T (Taxol) Surgery 4/25/2011 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 5/16/2011 Hormonal Therapy 7/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 12, 2019 04:45AM MaryScout wrote:

I did a preventative BMX with DIEP reconstruction in May this year. I love my results!! I went to The Center for Restorative Breast Surgery in New Orleans: https://www.breastcenter.com/. They were absolutely fantastic.

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Dec 12, 2019 07:15AM Kristin1021 wrote:

Thanks everyone for sharing your decisions and how you feel 😊 it’s so helpful to hear what other women have experienced - it’s invaluable really.

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 22, 2019 06:22PM LongArms wrote:

I’m MSH6 positive. I had BMX with direct implants for DCIS in left breast, then found out about the MSH6 Dx. The hardest decision for me was to have a TLH/BSO (total hysterectomy). I’m 42. In 2019, I had breast, uterus, and ovaries removed, so I’m really looking forward to 2020. For all these surgeries, I have not had lasting complications. I did have numbness and extreme nerve pain down my left arm for 3 months, but now it is completely fine. I believe that being extremely active has helped me recover quickly. I have no regrets

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Dec 23, 2019 06:36AM Moderators wrote:

LongArms, welcome to the BCO community! Although we are sorry that your cancer brought you here, we're glad you've found us and decided to post. Hope that you will stay active and continue to share your experiences and questions with our members. Please keep us posted on how you're doing, and let us know if we, Mods can be of any help. We're here for you!

Best,

The Mods

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Jan 6, 2020 12:15PM tmac22 wrote:

MaryScout, I'm very glad to hear! I'm getting this done next month and of course am getting a little nervous as it gets closer. I know I'm doing the right thing for me and am not second guessing at all, just getting nervous! Any tips??

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Jan 11, 2020 08:46AM toomanyhannahs wrote:

I had a BMX and opted not have reconstruction. Don’t miss them at all. They were large and heavy and wearing a bra was a royal pain. My clothes hang better than ever and most people are not even aware I am breast-less. I certainly don’t feel less of a woman. My feminine side is safely intact. The 10th circuit court just ruled that if men can go topless so can women. I my rotator cuff is completely detached, it’s now legal in 6 states for women to bare their breasts (which I don’t have) and it’s darned near impossible to get a wet bathing suit off with one arm out of commission. So...I negotiated swimming topless at our city rec center. It’s time to take a stand for ourselves as women who come in all different shapes and sizes, with or without breasts. It’s great to be comfortable in my own skin

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Jan 25, 2020 05:02PM flyswatter wrote:

Hello all,


I just wanted to pass on to all of you women how incredibly inspiring you all are, and that I consider you true fighters that really move me. It's amazing to see the level of significant support that exists in these forums.

I feel out place posting here, because I'm really looking for information for my wife.

There's a long story that could be told here, but in general, my wife has been diagnosed as "high risk" for quite some time, similar to many of you. She never knew her mother or anyone on her mother's side of the family, so from a genetic perspective, we have nothing to go on there. On her father's side, every woman in her family (four of them) has been diagnosed with breast cancer.

We just completed a round of genetic testing, where although she tested negative for the BRCA mutation, she was categorized as high risk. After months of discussion and prayers, she's decided to pursue a preventative mastectomy. I fully support her, but need some assistance from others that have been through this.

I just retired from active duty, and our insurance is TRICARE Prime. If any of you have knowledge on how to navigate the details of a preventative mastectomy with TRICARE, I would absolutely appreciate some help, or a point in the right direction. I looked through other posts and forums, but didn't find anything that fit my particular question, so I hope you don't mind me starting my questions here.

You guys all inspire me, and regardless of the responses I get, just know that I wish you all the best, and hope I'm not offending those of you who have dealt with cancer. We're pursuing a path that many people just didn't have a chance to consider. Thank you all in advance....

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Jan 25, 2020 05:32PM Moderators wrote:

Dear flyswatter,

Welcome to the BCO community. We are sorry for your wife's situation and glad that you reached out to ask questions of our members. If you don't get any timely responses, you may want to use the search function in the blue tool bar and search the word Tricare. Lots of posts come up around Tricare and while they may not be exactly with respect to prophylactic mastectomy you may find others with whom you can connect via private message. Keep us posted on what you learn and let us know if we can be of more help.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 25, 2020 06:07PM MinusTwo wrote:

flyswatter - sorry I don't know anything about TriCare, but wanted to let you know we are all here for your wife - AND for you, as you job is hard too.

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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