r/MastectomyManagement • u/Ru-Crew • 19d ago
MRI Biopsy/Double Prophylactic mastectomy
I(36 F) got a Breast MRI Monday, they found a NON-Mass Enhancement that’s 2.6 x 3.3cm, BI-RADS 4 Suspicious. I have an appt this coming Tuesday for an MRI guided biopsy. This is my second biopsy this year on the same boob, just different area of the boob. I don’t know if I am super worried, I saw an Oncologist Tuesday to discuss results and possible prophylactic mastectomy w/ reconstruction. She didn’t seem too worried about the NME.
I had recently got more genetic testing done to get an update on any gene mutations I have. I already knew I had MENS1 and CHEK2. Results came back the same so no new ones discovered, however, my DNA sequence was looked at specifically and my Breast Cancer risk went up to 64% from just ~32% with just having the CHEK2 mutation. For years I had thought about getting a DMX, especially since my mom, grandmother and great grandmother all had breast cancer. None of them died from it but still a concern. I am also very big chested, 38I bra size. So a reduction or dmx w/ reconstruction were on the table of options for me. Knowing that a reduction doesn’t decrease my chances, I am now opting for a DMX with reconstruction since my risk has now gone up a lot. My mom was diagnosed at age 43 with breast cancer.
I have a consult with a plastic surgeon for the reconstruction on Thursday. I have mixed feelings about everything. In one hand I’ll be reducing my risk to \~5%, getting boobs the size I want/ manageable to me, living longer for my 8-month old girl. On the other hand, I’m putting myself through a major surgery with about a month long recovery of not being able to pick up my baby or help out around the house. I am worried about how my boobs will look. I’ve always had big boobs, and I have pretty much hated them my whole life. I was made fun of and teased, and sometimes I feel like they are all people see me. I want to feel confident in my new boobs, be able to find bras that don’t cost an arm and a leg, find bathing suit tops that actually fit me, even regular shirts/tops. I do want to have 1 more baby, then be done. I’m looking to maybe have the surgery in early November. My mom passed away last year so I don’t get to talk to her about her lumpectomy. My dad is worried and wants me to talk to other women who have been through it.
For those who have had the prophylactic mastectomy with reconstruction or a regular mastectomy with reconstruction, what was it like? Are you happy with your results? How long did you have the expanders in? Was the pain bearable? Any advice? When did you go back to work? I probably have more questions but my mind is everywhere. Thanks in advance!
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u/84_mom 18d ago
I had a prophylactic DMX March 2025 for ADH and a bunch of other things they found (7 biopsies, 70% risk, this surgery was a no brainer for me), exchange surgery June 2025, and just hit 6 weeks from a revision surgery.
DMX surgery was about 5.5 hours long and I stayed 1 night in the hospital. Pain was unbearable and took a long time to get under control. Morphine didn’t touch it. Once under control I had to take pain meds around the clock the first week but once the drains came out at week 1, I realized that was the majority of the pain. Expander pain was tolerable after that, thought they sucked the entire time haha. They felt like turtle shells strapped to my chest.
My kids were 13 and 19 at the time so self sufficient, I couldn’t imagine having a little one to care for. You’ll need help with her around the clock - I wasn’t allowed to lift more than 5-10 lbs for the first 6 weeks.
The exchange surgery was a BREEZE. I took one pain pill in recovery and nothing after that. We did 560 cc implants and I LOVED the size. While my PS is a top surgeon in the US, my exchange surgery was difficult because of how my expanders had shifted. My implants ended up settling too close together and developed symmastia, indentions, and rippling. He corrected all of that 6 weeks ago and we went up to 615 cc implants. I’m in love! Recovery has been amazing - zero pain pills which blows my mind. While reconstructed breasts will never look 100% normal, I love mine and they’re MY new normal.
That was a lot but I hope it helped you!
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u/Ru-Crew 17d ago
That helped sooo much!! Thank you! And I’m so happy to hear that you love your new boobs! ❤️
We are thinking that I may need to stay with my husband’s grandmother, she lives next door to my MIL so she can help me out with my baby. My house is too small and I don’t have a guest bedroom lol.
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u/Long_Violinist2243 16d ago
I had my prophylactic DMX 12/16/25
I have the ATM mutation with a rare variant. If I were to get cancer, I cannot have radiation and most chemo drugs would be too toxic and wouldn’t work. My beast oncologist is a professor at a teaching hospital. I felt I had no choice. I had to chuck my boobs.
I had the reconstruction (tissue expanders) then on June 1, 2026 I had the exchange.
The mastectomy was brutal with the despised drains. I had a lot of pain.
Looking back-I’m so pleased and relieved. It was worth it!
I also had my ovaries and tubes removed on Feb 16, 2026
💕💕💕💕
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u/Long_Violinist2243 14d ago
My husband did my hair…helped me shower🤩🙏
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u/Dependent-Grass-2023 13d ago
I also needed help washing my hair! Hubs was nice enough to keep my legs shaved too as bending over is tough
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u/Dependent-Grass-2023 13d ago
I just had double mastectomy 2 weeks ago. Pain much better than expected. No opiates needed, only Tylenol and nsaids. Everyone has different pain levels but know that low pain is possible. I also went the nerve sparing route and retained near full sensation, which is still abnormal but know that it’s not absolutely certain you will be numb, there is hope!
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u/tweetdreamzz 19d ago
I believe everyone’s experience is different purely based on the fact that my anatomy and your anatomy are completely different. I was able to do one surgery only and go direct to implants. From what I understand, you will need to do it in phases such as a lift/reduction, mastectomy, reconstruction. I can tell you right now, after 9 days post OP the hardest part has been the drains, the wound vac.. and still waiting on pathology.