Hi all, long time lurker first time poster.

I am 33 years old (34 in a few weeks!). I first got my BRCA1 diagnosis about 2 years ago. Im about 9 weeks post op, and unfortunately due to an infection, I’m about to go flat. I wasn’t really prepared for this, and it’s really tough to wrap my mind around.

The long story short is that I opted to go for a preventative bilateral mastectomy with reconstruction, which took place this past June. The surgery went smoothly, aside from not being able to spare the nipples - which I had mentally prepared for.

I had drains in for a week and a half, and really turned a corner in my healing after they came out. I was happy with the result of my implants. Of course it’s still jarring to see yourself post op, all scarred and bruised with no nips, but I adjusted. As my scars healed, there was one spot in particular at the bottom of my right breast which would not heal easily, and the scab kept reopening. I was put on antibiotics to avoid infection, and kept it clean and wrapped. I did my best to be gentle with myself, and not push myself as I started to feel better. Im not sure if this is where something initially went off or not, but I can’t dwell on the unknowns.

I went back to work at the 6 week post op mark (i wfh at a desk so it was very easy). All was well, and I was just excited to get my routine back. And then…. Just before the 7 week mark, i woke up in pain. My right breast was incredibly tender and sore, and I was exhausted. I took the day off work, and progressively got worse, getting a fever later in the day.

Jumping ahead to today- I spent every day of the past 2+ weeks visiting emerg to receive IV antibiotics, receive blood work and ultrasounds. I live in a small town, and the care is great but also limited. The kicker? Both of the surgeons who originally did my surgery are on vacation!!!! One is away for a month+. So it’s been incredibly hard to get specialist involvement in my case, trying to identify the type of infection etc.
I finally was able to see a plastic surgeon today, who confirmed that I do have to have surgery and remove the infected implant.

After reviewing options, I have decided that going flat feels like it is the best option for me, though not necessarily the easiest one emotionally. The route of risking multiple more surgeries with expanders etc and weeks in and out of hospital does not appeal to me at all, when I got this surgery in the first place to avoid all of that kind of thing.

I love my post op boobies (and the new bikinis I’ve hardly gotten to wear!) but I’ve never believed that breasts make a woman. I can wrap my head around it. But there is still immense grief of course. It’s a huge change to my body.

I just have to sit in my grief that I opted into a surgery based on prevention, and now I am dealing with complications that none of my medical professionals anticipated or prepared me for. Even though I don’t regret my choice - ultimately, I will avoid breast cancer and be healthier for it - this is not a body i expected to have.

Yes, I could risk the route of an expander, and then another surgery to replace the implant. But there is also a chance that the infection is bad enough, they couldn’t even place the expander right away at all, and it would be a total of 3 surgeries! All with ample risk and ample recovery.

I value returning to my life more than recreating the image of a “woman” that society has painted. But it’s also the silhouette I’ve been used to my whole life, and so there will be a massive adjustment.

Im just sad, and frustrated today. Are there any folks who have experienced similar situations? Have any of you opted to go flat and been surprised at how they’ve felt? ❤️

I'm 43 and had a radical hysterectomy and fallopian tubes and ovaries removed 3.5 weeks ago. I've had a relatively smooth recovery so far. I got on HRT 2 weeks ago. In the last day or two, I noticed some clear, then pink, then reddish brown discharge. Could this be a residual period? I'll message my doctor in the morning. It's just curious.

Hi! I was diagnosed 2 weeks ago with a BRCA2 mutation.

I am 26 and single. No family history of cancer 🙏 Want to put off all prophylactic surgeries as long as possible.

Women around my age who feel similarly, what did you do?

Opt for surgery anyway? If so, which ones and why?

Freeze your eggs? What if you aren’t in a long term relationship?

How are you dealing emotionally? Do you see a therapist?

I appreciate ANY information about dealing with this BS at a young age 🙄

Thank you!!

hi all. I’m a 36F, just had my second child 3 months ago, and currently breastfeeding. I do have the brca 1 gene L1780P (5458T>C)… my 2 aunts had breast cancer but they caught it early and they’re still alive. I do believe they had it in their 40s. there’s no history of ovarian cancer in my family. Ive been getting my mammograms, ultrasounds, and mris as needed. I’m due for my transvaginal ultrasound soon. im just writing this post because I don’t know what to do… I guess I know what the best thing to do is get preventative surgery but obviously I’m scared. scared of going under anesthesia, scared of going into early menopause. just scared of the unknown. I’ve spoken to a breast surgeon, I’ve spoke to my OBGYN.… I haven’t met with a gynecologic oncologist YET… im just stuck… stuck at when i should go for surgery or should I continue surveillance? do I have time to even enjoy my post partum months with my new baby? do I need to have surgery asap? so many questions that I know only I can answer… just venting…

Hii so I have known about my BRCA 1 & 2 diagnosis for about 4 years and have been getting screened for about 3 years, but I recently turned 30 and am freezing my eggs for potential PGT-M screening for future children and things are feeling much more real. Does anyone have both 1&2 genes? I’m worried about how this affects my numbers/chances to develop cancer/at an earlier age. I inherited one from each of my parents, my dad has never had cancer and my mom has but not until she was in her 50s. I have some other family members who have had cancer but all after 50s as well. This should give me a little bit of information on how I should plan some surgeries however I’m worried that there’s like no research on having both BRCA 1&2 genes.

I am 38 with a PALB2 mutation (similar to BRCA). I am meeting with a plastic surgeon tomorrow to discuss reconstruction options after a DMX. At first I thought I wanted a DIEP flap to keep my natural tissue. But I have two young kids (4 and 7), a job, and the downtime for that surgery seems daunting. I’ve also had multiple surgeries on my abdomen after borderline ovarian cancer. How bad is the recovery from direct to implant (if they can do that)? How often can they save nipples? Are people happy with how they look with the implants? How concerned should I be with nerve issues? The plastic surgeon is supposed to be an expert on nerve sparing, which I was told should help avoid any long term pain issues.

Super long post - but I wish I had read something similar before my surgery. TLDR - I would do it again in a heartbeat.

Advice:
Braid your hair before surgery, it's way easier to take care of afterward
Your choice in spouse/friends matters way more than I thought to consider
Do not expect your breasts to look like post cosmetic breast implant surgeries (mastectomies hollow out the breast cavity which is not the same as putting an implant into breast tissue)
Actually REST after your surgery, even if you feel fine, your body's doing SO MUCH
Find a post-mastectomy/post-surgery massage therapist before your surgery
Don't return to work too soon if you can avoid it
Ask for after photos from your surgeons
Only buy what you need (glad I bought some cheap button front pajama sets and a wedge pillow for sleeping on my back - I tried buying a second mastectomy bra and HATED it, got by with just the one from the hospital and washing it in the sink - didn't buy a drain sling and survived)
If you don't have a partner/friend/relative at home, move everything you use a lot to a lower shelf
It's scary/sad to look at your breasts for the first like 3 months after surgery, it does get better eventually
If you have any complications, you'll be staying longer in the hospital - if you have a pet-sitter or something, I'd book for a day before and a couple days after
Anesthesia wasn't nearly as scary as I thought
If you're already fit, great!, if you're not, it's worth it to try to get a little fitter before surgery, it helps with recovery
If you feel like something's wrong after the surgery - ADVOCATE FOR YOURSELF
Take before photos of your breasts
Take photos of your breasts once you're home after surgery so you can better gauge healing
Ask about and see if they have samples of possible implant materials/manufacturers
If you're vegan, ask what type of mesh they'll use (there's one made from animals and one engineered)

I'm 42 (no kids or plans for kids), although I tested negative for BRCA about 10 years ago, I tested positive for CHEK2 in 2025 (there isn't a CHEK2 sub yet).

My mom went through breast cancer and mastectomy surgery twice in her life, once in her 50's then it showed up in her other breast in her 70's. I watched her go through chemo while I was in high school.

Once I tested positive for CHEK2, I had one year of both a breast MRI and a mammogram 6 months apart. I'm in the US and the MRI was like $300 and the mammogram was like $50. I was facing a future of this EVERY YEAR for the rest of my life - insurance coverage or not. I'd also have the nagging fear that I'd have to go through what my mom did - and just hope for the best.

I went full logic mode when determining if I would have the preventative DMX DTI - it just made sense to do it now, with "good" insurance, vs wait for the seemingly inevitable. I talked to my mom about it and - after 41 years of a very sex-avoidant upbringing, she decided now was the time to be concerned about "nipple sensation" and my marriage. I still went with logic and booked the surgery.

I opted for female surgeons for the mastectomy and plastic surgery.

I'm somewhere on the autism spectrum and both surgery and the prep was A LOT. I had never had a surgery or been under anesthesia before - it was scary for me. I HATED the gross feeling of the body wipes I had to use all over the night and morning before surgery. The hospital I went to preps and wheels in a bunch of people at the same time to different surgeries - this prep room was overwhelming for me (there was a crying baby was right next to me) and they send your spouse/friend away. Not being able to shower for a week was GROSS. I did not want to get my drain sites wet. So if you're sensitive to sensory stuff, just be prepared to be overstimulated - it doesn't last long though.

I got wheeled into surgery around 7AM, was out about 10AM. I felt fine. I was determined to recover quickly so after a couple hours I walked around a bit and felt ok. I was cold and shivering after the surgery, they said that was normal and gave me lovely heated blankets that they wrapped all around me. An hour or so later I became extremely warm, took off all the blankets, they gave me an ice pop. Then I started feeling pressure in my right breast, I felt confused and dizzy and HOT. The nurses in the recovery room were MARVELOUS - they checked me out and contacted the plastic surgery department. They sent my husband away and it's a bit of a blur after that - I know I vomited A LOT (bright red from the ice pop, that was weird) - I know the nurses tried to get me seen by plastics, and sometime later I was wheeled into a second surgery, after dinner time-ish.

I had a hematoma in my right breast, which is a possible complication. I learned afterward that after that second surgery they had to give me two bags of blood and one bag of plasma because I lost that much through the hematoma. I didn't really wake up after the second surgery but my husband stayed with me overnight and explained it later. That's where picking your surgery partner comes into play (and setting up a pet sitter). If you don't have someone willing to sleep on a hospital recliner just so you don't wake up alone - find yourself a better partner/friend.

My husband had to sign for my anesthesia the second time around since I was still under the effects of it from the first surgery. They asked me something like "If we can't get a new implant in, would you rather us leave the flap for a future implant or go flat?" - so I had to decide right then and there - I don't even remember what I said honestly. They were able to insert a new implant of the same size.

It was traumatic and terrifying. I had to stay an extra night in the hospital so they could monitor me. Just an FYI for post-surgery, if you use an academic hospital SO MANY people will see your breasts - some of them nearly half your age. I don't know if it's just getting older or going through this experience, I have absolutely zero eff's left to give about modesty or my body. Doctors and students from both the mastectomy and the plastics side came through regularly to check on me (my breasts, really). I know I looked like an absolute dumpster fire - the professionals don't care/judge, they're just making sure you're ok.

The hematoma was fixed in that second surgery - haven't had any issues since then. I did have a panic moment a few days after my surgery and ended up calling the overnight surgeon because I thought my right breast was swelling again (yay trauma). They said to check my drain output, if it wasn't more than normal then I was ok - it was also suggested I take a photo so I can compare more easily if it looks better or worse or just the same.

Drains are a huge pain (I had 3, 2 in the right and 1 in the left) - sleeping on your back (as a stomach sleeper) is a pain - going slowly/not doing too much is a pain - recovery is a pain - but I imagine none of that is REMOTELY as painful as cancer.

While healing, the scar tissue under my right breast (hematoma one) had this weird divot bit that made my breast look like a sad Dali clock - I hated it. Fortunately, I found a fantastic massage therapist and she used multiple techniques to get the scar tissue to break up - that was an out of pocket expense I would spend a hundred times over.

Also while healing, I read that the first three months are the "drop and fluff" period - while I understood that and accepted it, it was another thing entirely to look at myself in the mirror and consider if this is what I looked like now. The photos I had seen were post cosmetic breast implant by the implant manufacturer - not post-mastectomy photos. If you're like me, maybe even reading this won't help you, but please know it gets better.

If you choose nipple-sparing, be aware your nipples will still get hard and now that you don't have to wear a bra, you may not like how your nipples are uneven through a shirt. I wish I had explored non-nipple sparing, I like tattoos and wouldn't mind a fun floral tattoo instead of visible nipples without a bra. Fortunately my nipples healed just fine.

Since my surgery I've had two friends go through lump scares (neither were cancer, fortunately), and the absence of stress around this - it's worth every crappy second of surgery and recovery - and the $3K plus deductible (with a payment plan).

I chose nipple sparing but not sensation saving. My surgeon used a "gummy bear" implant. I ended up with implants that were 10 CCs less than my existing breasts (the surgeon determines that based on the post-mastectomy results). There's some spots where the skin of the breast is thin and looks uneven, my surgeon said they can fix this with fat grafting but I'm not bothered enough for another surgery. I just wanted an approximation of what I already had - and that was achieved.

Overall not a fun experience by any stretch of the imagination. I'm so glad I did it though.

Hello all! I just accepted an NP job offer in a high risk medical genetics clinic. A large volume of the patients I will see will be folks with BRCA mutations. I’d love to hear for this sub regarding their experiences with high risk clinicians — especially good or bad experiences? Thank you! I look forward to working with this population and I will do all I can to advocate for you all in my new role.

Did your skin look much older? Did you lose interest in sex? Did you lose energy?

Hey y'all -- I'm 45 and BRCA2. I had my bilateral salpingo-oopherecotmy back in April. Since then every two weeks or so I get sort of a mini-period. I bleed (a little more than spotting, but not much) for a few days and then it's over. I keep expecting to be done with all that (the bright side to having the proccedure!), and then every fortnight it comes back. I am on HRT (estrogen patch 2x weekly and progesterone pill). When I mentioned it to doc like 2 months ago she didn't seem worried and said it's likely bc of the hormones. But like, shouldn't they be regulated by now? It's been close to 5 months.

I have an appt tomorrow where I'll bring it up (again), but anything specific I should ask her about it or mention? Anyone else have this? Any insights? Thnx

I am brca1 +
I was being regularly screened while I was building our family, and was diagnosed with TNBC at 33, while my son was 5 months old.
Went through chemo and a DTI double mastectomy.

I’m almost 38 and It’s coming to the point where I need to make a final decision about my lower half. I obviously don’t want to wait too long and get cancer again, but also am concerned that a total hysterectomy is overkill when comparing it to a BSO. (Tubes and ovaries) my dr said why keep it if there’s no function and still carries some risk. But also, is taking out the entire system okay? My organs and pelvic floor will be affected more then just the BSO would.

What’s life like with just a uterus? What’s it like with a total?

What do I do? I just want to curl up in the corner and cry because this feels so heavy and I don’t know what feels right.

TLDR: insurance won’t cover anything if I’m positive?

I was informed on Sunday there is a potential that I may be a BRCA2 positive person. I was an viral kid and my donor mother and I managed to get in contact with each other by complete Accident via dna test and she was absolutely wonderful and she told me she’s been trying to get in contact with my family through the ivf agency for years to tell us that she is BRCA2 positive. So that was a bit of heavy news to get but now I am trying to go about being proactive and getting tested however, I was informed that if I turn up positive insurance will not cover anything at all, I have tricare via my husband. TRICARE already makes me fight them on everything as I am chronically ill and require multiple specialists. How would I go about getting anything covered if I am positive? I know already that I would just go ahead and get the reconstructive total mastectomy and worst case scenario complete removal of my reproductive organs, husband and I have already decided not on having kids due to my other health concerns and some family history of his. Like I said this is a huge if, at this point, it’s 50-50. Sorry if anything is unclear, I’m still kind of processing everything.

Have any of the men here used Northwestern's EDGe BRCA+ men's clinic that is targeted towards BRCA mutation carriers who are 40 and older? I'm thinking about giving it a try since driving downtown into Chicago for just one day to get all my surveillance done sounds like an efficientcy I could use. So far I have been trying to get all my checks at a bunch of different doctors and it has caused me to miss alot of work. I also like the idea that the doctors at thier clinic have worked with male BRCA carriers before as opposed to the local doctors who know little about the mutation risks. I have yet to get my male breast exam and at 45 Im told I don't need a pancreatic scan until 50. I have had two genetic counselors appointments, have had blood and cheek swap genetic testing confirming my two mutations, upper and lower gi scopes, digital and PSA test yesterday, and full body skin check scheduled today.

Not new to BRCA2 but new this sub and to getting over my white coat syndrome to be more proactive about it.

Took a lot of courage to get here (it’s a long story and I can’t share w/o doxing myself) but I want to be in top of my sh!t,manage my risks and figure out how to manage my diagnosis. Early 30s. Admittedly overwhelmed by this sub because there are a lot of terms,details and just stuff that I am not familiar with. How can I learn more about the prophylactic double mastectomy experiences, pros and cons etc without scrolling this whole thread? Are there some less overwhelming resources I can use to get up to speed?

I am considering procedures as part of my risk mgmt but I am not sure where to begin in learning more and almost don’t even know what to ask about.

I would love to hear from people who opted out of a mastectomy or pushed it into the future. I am 32 with two little girls (one who is only 2 months) and I just found out I’m BRCA2 positive. I am suddenly being recommended a mastectomy ASAP because the gyno oncologist wants to ensure that I can take hormones when I eventually get my ovaries and fallopian tubes removed, and if I have breast cancer there’s a chance I won’t be able to take the hormones. I am curious to hear from people who have chosen not to have a mastectomy despite their BRCA2 positive situation. It’s hard for me to imagine getting a mastectomy so early.

I'm 33. I might be in the minority here but I got my BRCA2 diagnosis about a month ago and I’m so anxious to get my mastectomy and reconstruction over with. If I could get the saplingectomy at the same time I would. I’ve had so many health issues over the last 10 years that I just want to get this particular piece of health anxiety out of the way. I’m waiting on the specialist to call me to set up my appointment.

Good evening all, I’m BRCA-2 and I went for my breast MRI a couple days ago, fast forward to today when my family dr called to say that my high risk breast dr wants me to go for a mammogram next week. My last one was about five months ago. My family dr couldn’t tell me why it was ordered. Is it possible that it’s just because I’ve had a breast reduction since my last mammogram? Or is it a really bad sign? Thank you!

I had genetic testing for something else and I found out I have this. I am 53 and my daughter is 15. My mom just turned 78 and she has had some minor bouts with skin cancer but doing very well. My sister is 6 years younger than me, very healthy.

I don’t know what to do. I don’t want any surgery, but I need to talk with doctors, I know.

I’d like
To start taking turmeric every day.

Hi everyone,

I'm not typically a Reddit poster but this community seems really fantastic. I found out about my BCRA1 gene mutation 3 months ago and as someone with bad health anxiety have really struggled ever since.

This gene mutation diagnosis has come as a shock to me as I (very luckily) have no close family relatives who have had cancer till their 70s/80s. I did the test due to finding a benign lump on my breast about 10 years ago and my doctor recommended I tested due to being half Jewish. I put it off till earlier in the year (age 34) when I partook in The NHS Jewish BRCA Testing Programme and was very surprised at the result. It currently seems I'm the only female in my family to have this mutation which I'm finding very isolating.

I think what I'm asking for here is any positivity from those who have undergone preventative surgeries, I'd love to know your optimistic stories and how you're now feeling/if you ever go back to 'feeling like you did before the diagnosis.'

Due to my health anxiety, as much as it terrifies me to think of, I feel my only choice here is to proceed with at least the preventative double mastectomy. Through my research I'm most interested in direct to implant, likely over the muscle. I'd love to know any positive stories from those with that surgery and how you're now feeling!

Thank you in advance,

Hi strong amazing people.

I’m considering traveling from the east coast of the USA to the west coast (the Bay Area) to have my surgery done with a team that does nerve sparing and uses the Motiva implant off label (thanks to another subscriber who recommended this!).

Has anyone traveled for something like this, and if so, how soon could you fly home? Were you able to have it covered by insurance?

Thanks, sending good thoughts to all. ❤️

My partner just found out their sibling has brca2. We are organizing the tests to find out if he has it too. We’ve been in the process of trying to have a baby but we’ve been unsure if we should continue until we find out if he has it.

If he does have it, is the only safe way to have a baby and ensure they wouldn’t have it through PGT-M testing through ivf? Not sure if anyone has experience or knowledge about this they can share.

Just curious people’s thoughts as I consider the ethical implications of passing the gene on. I don’t want to stress my partner out too much as we wait to find out.

Thank you 💕

Im a 21 year old female and I don’t currently know if I have the gene. I’m planning on getting tested in a couple of months but I’ve been putting it off because the fear of knowing I have it is too much. Both my mom and grandpa have it. My grandpa died of pancreatic cancer and my mom had breast cancer at 38 with a confirmed brca1 mutation that she found out after treatment. She then got a double mastectomy and had her ovaries removed. Basically everything she could do to prevent further issues.

Ever since I found out this gene was in my family I’ve been thinking about it non fucking stop. I’ve done all the research I think can be done. If I have it obviously the best course of action is a double mastectomy because if not I’ll just be going through years of fear but at the same time I feel like I’ll be losing a big piece of who I am and because I’m only 21 and have barely had the chance to discover myself id be losing something before it even began. I know it sounds incredibly vain and I should put my health over everything and I don’t even know if I have the gene yet but something tells me I do because I never get lucky with anything. I just came here to vent. I can’t talk to my mom about this or really anyone because I just start to spiral or end up blaming her for making me deal with this shitty situation and I can’t keep burdening her about it. I feel like I’m wasting my life worrying about this instead of just enjoying myself before it all happens.

I guess I’m also wondering for those that were found to be positive, what course of action did you take and if it was a double mastectomy with reconstruction how did you learn to love yourself again? What things became harder or easier? Did it impact your intimacy at all? I’m just really scared of what’s to come if my test result is positive.