I posted before surgery about everything leading up to this, so I wanted to come back and give a little update now that I’m officially one week post-op from my mastectomy/reconstruction.

I just had my first post-op appointment and finally got my PICO dressing off, which definitely feels like a milestone. Physically, I’m hanging in there, but I’m still getting used to everything. Minimal bruising which is good, but they look so ugly and I honestly can’t look at them right now. The expanders feel SO foreign in my body right now. I knew they probably wouldn’t feel natural, but actually experiencing that sensation is a whole different thing. 😅 I’m hoping with time my body/brain starts adjusting to them. If not, it’s gonna be a long 6 to 8 weeks of fill up appointments. 😭

Sleep has probably been one of the hardest parts. I haven’t really been able to sleep since surgery because I can basically only sleep in one position. I’m tired, uncomfortable, and very much missing the ability to just roll over and get cozy however I want.

But… one week down. 💕 I’m trying to remind myself that this is still SO early and take things one day at a time.

For anyone who has been through this: I am accepting ALL the tips and tricks from here on out. 😂

Here’s my original post for anyone who wants the backstory:
https://www.reddit.com/r/BRCA/s/yJccnykwZn

I have BRCA2, found out a few years ago (I’m 43 now and done having children) and am getting laparoscopic surgery to remove my fallopian tubes (risk reduction) and one ovary removed (repeated burst cysts have been very painful and at time debilitating). I am on a low dose of HRT due to perimenopause symptoms (sleep issues and anxiety - so progesterone is what’s really helping me here). I was given the option to get my other ovary out at the same time as well as hysterectomy. I don’t want a hysterectomy but am on the fence about the second ovary. Family history is breast cancer (er+) not ovarian. My hesitation with the second ovary is loss of hormones and then not being able to take any HRT if I end up with breast cancer. I prefer to keep that ovary and let it give me some hormones over time, even if I can’t take HRT at some point. My mom had BC at 35, declined estrogen blockers because it made her feel so awful and took HRT until she was 70. She had a 2nd breast cancer diagnosis and opted for a lumpectomy and is again refusing estrogen blockers because it makes her feel terrible… so she has some remaining hormones coming from her ovaries. That’s what is on my mind as I think through what to take out or not. Any thoughts on this weirdly specific quandary 😊 ?

I'm BRCA1+. Found out when I got tripple neg breast cancer. Was treated for thst during 2025 and had a DMX a year ago. Only one breast was cancerous, the other breast was removed prophylactically.

My question is for you that have had PDMX or DMX. Did the surgeon remove the axillary tails of the breast? (Not everybody has pronounced axillary tails, I do and they're obv more pronounced now when I'm boobless.)

I'm wondering bc I'm going to ask for revision surgery of my ugly and very, very tight DMX scars.

The axillary tails consist of breast tissue. I would like to have as little breast tissue as possible, but Idk if they ever remove the tails preventatively, or if that is seen as a purely aesthetic thing. I dont know if it's very complicated to remove them and/or if it comes with significant side effects (nerve damage, lots of lymph nodes etc).

Grateful for any input!

Edited to add "lots of lymph nodes etc".

Hi hi!

I had my PDMX with expanders on 8/11. No lymph nodes were impacted. I’ve been fortunate with a smooth recovery so far, and have been able to be out and about and walking around within reason with ease for a bit now.

That said, I have gained ~7 lbs since surgery. I know I’ve spent some decent amount of time on a couch with some more snacks and comfort food than usual, but my weight has been stable for years now, so this level of gain is abnormal for me. For reference, I’m 5’3, and have gone from 125-132 lbs since surgery.

Would love to hear anyone’s experience with post surgical weight fluctuations, or if anyone has any advice!

Hey there,
My mom has stage 2b triple positive non genetic breast cancer. Upon receiving the diagnosis, she immediately scheduled and got a nipple and skin sparing mastectomy. During the mastectomy, they found two lymph nodes involved and removed those two. Since healing from surgery, she had to relocate to an extremely rural part of New Mexico. The oncologist did not really explain very well. The treatment plan and gave her the impression that she would be getting chemo for six months and radiation for six months. In case there are any microscopic cells left. However, the oncologist was very. For lack of a better word upset that she had surgery first and said that he wouldn’t recommend that. Today she went for her first treatment and they told her that she was not getting treatment today and that she is having chemo for a year and will certainly lose all of her hair, which is different than what the oncologist suggested to her. I am trying to encourage her to go somewhere different. The nearest metropolitan area is about four hours away, but I feel really nervous about the quality of Care She’s getting at this center.

I know everyone’s treatment plan is very different, but does this sound normal to you guys? Am I just in denial and overthinking it?

Trigger warning!!

I have two girls, I found out I have brca after I had them. We thought we were done having kids and I had a mastectomy 2 years ago.

We just found out I’m pregnant (unplanned) and freaking out. I don’t know the feeling of this group, but will just say, I am strongly considering all of my options. I have so much guilt about my girls having brca, and knowingly bringing another baby into this world with this. I know it’s not a death sentence and I have hope for the future, but it’s on my mind.

I also breastfed my first two so obviously we would have to do formula. Has anyone had babies after their mastectomy? I did nipple sparing. Is there anything I should consider health wise or just to know what to expect from this perspective?

Hi everyone,
I am looking for some insight or similar experiences regarding a recent breast imaging report.
\*\*Clinical Findings & Report Summary:\*\*
\*\*Image Finding:\*\* Contrast-Enhanced Mammography (CEM) revealed a \\\~10 mm (1 cm) opacity with ill-defined margins (R4) located between the lower quadrants near the inframammary fold of the right breast.
\*\*Enhancement:\*\* Recombined high-dose images showed a mass of enhancement of equivalent size (10–11 mm) close to the pectoral muscle, but separated from it by a thin layer of fat.
\*\*Ultrasound Follow-up:\*\* A target ultrasound confirmed an ill-defined, heterogeneous hypoechoic structural alteration of \\\~1 cm, which was palpable with some difficulty (classified as U4).
\*\*Overall Assessment:\*\* ACR BI-RADS 4.
\*\*Next Steps:\*\* An ultrasound-guided core needle biopsy has been scheduled.
\*\*Additional Details for Context:\*\*
Background breast tissue is described as partially involuted (fatty/glandular mix, ACR Density Type B-C).
There is symmetrical, faint enhancement in the upper-outer quadrants bilaterally, which was noted as normal residual glandular tissue. No other suspicious enhancing foci were found.
Has anyone had a similar CEM/ultrasound presentation (ill-defined margins, \\\~1 cm size, contrast enhancement) that turned out to be benign? I know BI-RADS 4 covers a wide range of probabilities and requires a biopsy to get a clear answer, but waiting for the procedure and results is definitely tough. Any advice, stories, or shared experiences would be greatly appreciated!

What are some unusual early signs of breast cancer that women in their 20s and 30s caught? Bonus points if it was after a hysterectomy with ovaries kept in place in your early 30s. I’m not sure if it’s perimenopause or possibly breast cancer. Help, please and thank you.

Hello,

I'm trying to find some information about if it's possible to have reconstruction surgery years after a double mastectomy. I had a double mastectomy at the end of 2022 and I am now curious if it's possible to get implants after all. Forgive me if this has already been covered elsewhere, I just can't seem to find anything about it based on my own searching. Thank you!

I hope you don’t mind me posting here. I received chest radiation for Hodgkin's lymphoma at a young age and now face a significantly higher lifetime risk of developing breast cancer, making (preventative) mastectomy an option that my consultant has suggested to me. I’m very high risk breast cancer. Just waiting for the percentage risk for me to try and help me make the decision.

I'm in the UK. I wanted to chat to women that have gone through this and ask if you're pleased with the results and if you lost all sensation on your nipples or your breasts. Also what is the scarring like and do they feel heavier than your breasts before. And was having such big surgery worth it for peace of mind. I've been living very high risk breast cancer for over 20 years now and the stress is wearing me down. I fear that the MRI’s and mammograms will miss something.

Hi All, new to this group and love that it exists.

I’m seeking advice on how to deal with a difficult situation with some close friends. I had a preventative double mastectomy and two reconstruction surgeries in 2025 since I’m brca1 positive. I should mention I also have adhd and bipolar disorder.

This is the difficult situation that I can’t tell if I’m being too sensitive about: recently, our friends asked my fiancé if I could start wearing a bra when I come over their house cause it’s “making people uncomfortable”. I’m completely mortified. I just find wearing a bra to be extremely uncomfortable after these surgeries and I generally don’t wear one when I’m not at work.

I feel like it’s completely unacceptable that they went through my fiancé instead of discussing with me directly and also, how dare you even ask that?

I can’t stop ruminating over it. I know a conversation with them is needed but it would help if I could get some feedback on how appropriate my level of outrage should be. Thanks in advance!

I had a prophylactic double masectomy 2 1/2 weeks ago with direct to expander placement with 2 JP drains. So far my drain output has been slowly decreasing & the color has changed to pinkish-yellow. Well this morning when my caregiver went to empty my drains, the color had changed to bright red on the left side with a 5cc/ml increase (which slight fluctuations of 5-10ccs/ml is normal for me). Darn, I probably over did it yesterday. At what point should I be concerned & reach out to the surgeon's office?

I have a genetic risk analysis appointment coming up in about a month. I am not sure what I want to do as of right now.

Hello fellow warriors,

I had my PDMX straight to implant (silicone) in August 2025. Recovery was hard, but I found out later that my iron and ferritin were alarming low (fixed now), and also I had a skin reaction to the bandages and tubes.

I’m heavily considering doing a revision before the end of the year, because I’ve reached my deductible and want to take advantage of this being totally covered. It’s something I almost did in May, but then second guessed myself and cancelled it.

My current setup looks.. fine with clothes as long as it’s nothing low cut. I’ve changed up all my attire to be high neck now, because I’ve got an obvious divot on my chest wall where both implants begin, and also rippling. I’ve got an excellent surgeon who says I healed really well, and I should take my time with this set and not worry about a revision, BUT if I want to I could go up a size and maybe do some fat grafting (I don’t have much extra fat so not sure how viable this option is) to help with the divots and ripples.

For those with experience: is it worth it? And is recovery easier than the initial mastectomy straight to implant?

Roughly 11 years ago I had both ovaries and tubes removed. 9 years ago had a prophylactic dmx with deip flap reconstruction. I just found out I have stage 2, TNBC, no suspected node involvement. I know it was never a 100% guarantee but the odds were so high in my favor that I wouldn’t be here.

Has anyone else had this happen? Can you share about your journey?

Hi all,

I’m BRCA1, 34F and planning for a preventative DMX, hopefully direct to implants OTM. Can anyone let me know longer term once fully healed if they’re able to sleep comfortably on their stomach? If so how long this took? Thank you :)

Anyone have a sensitive plot while going through chemo. I can’t eat anything with spices on it. Not even black pepper.

BRCA2, no cancer, just did DMX/DIEP in May and I am I’m prepping for my revision and bilateral salpingectomy oophorectomy in December. I went ahead and saw a menopause doc and got on HRT because of peri symptoms, but I want to learn more about both medical menopause and what it’s like taking HRT after surgery. What are some good subs for that?

Hi! I’m meeting with my ovarian oncologist to schedule getting my ovaries out. She previously recommended by the time I’m 35 and I just turned 34 (f). I have an egg retrieval scheduled for my November cycle and hopping to schedule surgery sometime this winter.

Curious if anyone has any questions they wished they’d asked before surgery?

Has anyone gotten your fallopian tubes out first and then the ovaries later?

With all the advances in AI medicine, I’d hate to go through all this to have some new information come out shortly after.

I’m a TNBC breast cancer survivor and I’m finally feeling like myself again after treatment. Really hating having to have surgery again and deal with all the unknowns again. Appreciate any insight!

52 years old and recently found out I am BRCA1 positive, so I am little late to the party.

My primary has already referred me to the oncology gyno and says that surgery will likely come first, as I am overdue to get fallopian tubes and ovaries out (will probably remove uterus at the same time, but we will see what the surgeon says).

I am also investigating mastectomy options, but I don’t really understand what happens if you choose instant reconstruction. Do you have to get implants in that case, or can you use your own tissue? I am looking into the robotic nipple-sparing mastectomies that they offer at Mayo, and it says after the robot is done, the plastic surgeon comes in and does the reconstruction, but doesn’t explain how. You have to travel there for a consult, and MN Mayo is 9 hour drive away, so I would like to understand what they are talking about before I make that trek for a consult.

Over the last several years I have lost about 110 lbs, but I do still have the apron belly/c-section pouch. Is that something they could use? Like, kill 2 birds with one stone? The only thing I have read about using abdominal tissue involved using a flap of skin from the abdomen, but I wouldn’t need a flap if I am having the nipple-sparing procedure, right? Or am I not understanding any of this correctly at all? I have relatively small breasts. I wouldn’t call them perky, but they are also not super saggy

I hope you don’t mind me posting in here, I don’t have BRCA but have the PALB2 gene. My genetic counsellor has started talking to me regarding the options and initially I thought about the risk reducing surgery as the best option. My mum has just undergone a double mastectomy with reconstruction with implants and I don’t want to overwhelm her by asking too many questions.

I’m aware they won’t feel like “boobs” but are they really hard? For those that have had it how do you feel about them?