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Topic: BRAC + Diagnosed with DCIS In Stu -Confused on treatment plan

Forum: Living Without Reconstruction After a Mastectomy — Discuss prostheses, swimsuits, bras, and other options for women not having reconstruction or waiting for reconstruction.

Posted on: Oct 18, 2019 07:22AM - edited Oct 18, 2019 07:22AM by Confused516

Confused516 wrote:

hello- I am 50 diagnosed with DCIS in Stu stage 0 BC. I am BRAC positive

totally confused on what to do - Mastectomy and go flat, or have implants (not candidate for using own tissue) or lumpectomy with radiation

So much fear with each option!

Flat what will I look like?

Implants fear of foreign things in body, uncomfortable, complications. Fear I went to radical what if it doesn't come back - 50% chance

Lumpectomy with radiation- fear of cancer coming back doing this all again, coming back stronger?

I change my mind every 5 min trying weigh on what to do.

Any input on someone in same situation would be appreciated.



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Oct 18, 2019 08:03AM Yogatyme wrote:

Confused, I’m not sure what has been discussed w you re: treatment options w DCIS with the BRCA mutation, but when I was dxed w stage 1A micropapillary bc, they told me my risk of recurrence was 85% for both breasts bc of the BRCA1 mutation. For me, it was a no brainer and I opted for bilateral mastectomy. I absolutely have no idea if this is true for stage 0 but you might want to discuss this w your team. As for the decision about reconstruction or going flat, that is not an easy one and I have seen that you’ve been asking for others experiences w these options. It is a very personal decision but also worth having a discussion w your team. Keep reading on this forum, it’s very helpful and lots of good information. Wishing you the best with all your decisions and treatments.

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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Oct 18, 2019 10:56AM 2019whatayear wrote:

Im BRCA 2 . Had a BMX and no implants. I am pleased with my decision. Frankly I wasn't very attached to my boobs and didn't want numb replacements and bc I had cancer and also will be having surgery to remove my ovaries and tubes next year- I wanted as few surgeries as possible. The moment I got the BRCA 2 test lumpectomy was off the table for me. I want to do everything I can to avoid more cancer. IF I had found out I was BRCA2 prior to cancer I would have gotten the BMX as a preventative measure and gotten the reconstruction- but since I had cancer-- fewer surgeries the better is my motto-

Hope that helps by the time I had my surgery I was very sure I wanted to live flat. I don't mind my flatness or my scars.

IDC 2 cm micromets 1 node 8 more removed. BMX 6/24, A/C then Taxol 7/25, 25 rads 1/6/2020 No reconstruction BRCA2 - BSO 2/19 all clear/ starting AI on 3/1/2020
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Oct 18, 2019 11:33AM Yogatyme wrote:

whatayear, I, too, went flat and no regrets. Also no regrets about BMX or prophylactic oopherectecomy. The fewest surgeries were also important to me. If I were younger I might have had a different decision, but at 68 these seemed like the best options for me.

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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Oct 18, 2019 12:12PM SimoneRC wrote:

Hi Confused516!

While I am not BRCA, I have a different pathogenic mutation. With a strong family history of cancer and a potentially bad outcome from radiation with my mutation I did not hesitate to have a bilateral mastectomy with reconstruction at age 51 after being diagnosed with cancer. I have not had any complications with any of my surgeries. For me, I would not have been happy without reconstruction. I did pre-pectoral reconstruction with tissue expanders. Yes, they are uncomfortable for a few weeks. My outcome so far has been good and the implants do not bother me. I also had a total hysterectomy and ovaries and tubes removed (BSO). That was a longer recovery since I had to add the hysterectomy. BSO alone is supposed to be a quick and easy surgery with easy recovery. I am post menopausal and had been on Aromatase Inhibitors for a year and have not had any issues not having my ovaries.

Cancer sucks. I prefer to try to avoid having more of it! I am a very fit and active 53 year old and am very happy that I chose the path I did. Everyone is different though!

Good luck! I hope you find your clarity!





ATM Gene Mutation, Deletion. IDC w/Lobular Features and Focal Mucinous Features. Pre Pectoral Reconstruction. Hysterectomy
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Oct 18, 2019 03:10PM MBPooch wrote:

Confused516 - I was not BRCA positive but wanted to treat as aggressively as possible and at 45 did not want to be completely flat. I was not a candidate for reconstruction using my own tissue but my plastic surgeon suggested Direct To Implant. I was able to have my BMX and implants put in at the same time. I knew it was a game time decision and there was a small chance that depending on the skin after the BMX that I may have had to go the expander route but thankfully everything went perfectly. It was nice to avoid a second surgery and motivating to wake up with breasts that were similar to what I had. The recovery was way better than I imagined it would be. Only down and out with limited mobility for a couple weeks. I've had no complications and am so happy I chose the route I did. As you continue to gather more information I'm sure your decision will become more clear. Wishing you the best!

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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Jan 25, 2020 04:05AM mell0 wrote:

Hi Confused516!

I understand your fear.

I was diagnosed with Intraductal carcinoma in situ on my left breast, stage zero. BRCA2 gene mutation positive.

I was diagnosed in October 2019 and had bilateral mastectomy without reconstruction surgery in December 2019. I am 34 years old.

I am still healing (mentally, emotional and physically). I am doing better everyday, and my wounds are healing normally according to my healthcare team.

Due to my BRCA2 mutation and age of diagnosis, I didn't want to to risk it going back to the same breast. I also did not want to live in constant fear of getting cancer on my right breast. I lost my father to cancer, and my mother just completed her chemotherapy in 2018. My mindset when I received the diagnosis was to be proactive. I did my own research, talked to plastic surgeons about reconstruction options, radiologist and breast oncologists and watched a lot of videos. At the end of the day, I am glad that I went to two different clinics to get more education about this diagnosis.

I wanted the option with the least treatment and downtime. Before this, I never had surgery before. Also, after seeing the video segment about the "Flat and Fabulous" ladies, I was inspired by them.

I really wish you the best with your journey.

Be kind to yourself and others. Dx 10/2019, DCIS, Left, 4cm, Stage 0, 0/5 nodes Surgery 12/17/2019 Mastectomy: Left; Prophylactic mastectomy: Right
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Jan 25, 2020 10:23AM Moderators wrote:

Dear mell0,

Welcome to the BCO community. We are so glad that you reached out to share your story. We know that it means a lot to others who are reading and posting on the boards. We hope that you will stay active here and offer and receive support from our members. We with you the best on your journey as well.

The Mods

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May 10, 2020 12:15AM A65 wrote:

Hi Mell0,

I wanted to see how you are doing now as I am also faced with a similar situation and having to make a decision.

Thank you.

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May 10, 2020 02:40AM mell0 wrote:

Hi A65! I am doing well. I'm back to doing normal stuffs. Time flies since the surgery, and I am still grateful for my decision and no regrets.

I just replied to your private message as well.

Feel free to reach out again. Take care!

Be kind to yourself and others. Dx 10/2019, DCIS, Left, 4cm, Stage 0, 0/5 nodes Surgery 12/17/2019 Mastectomy: Left; Prophylactic mastectomy: Right
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May 30, 2020 08:16PM HeidiE04 wrote:

Hi, brand new here and just sent you a private message.

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May 30, 2020 08:55PM Moderators wrote:

HI HeidiE04, and welcome to BCO. Feel free to share a bit with us, or add to your profile. Thanks for chiming in here.

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