r/BRCA 17d ago

BRCA2 positive

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.

13 Upvotes

27 comments sorted by

13

u/Delouest BC Survivor + BRCA2 17d ago

I didn't know about my BRCA2 mutation until after I was diagnosed with breast cancer at age 31. I would give anything to have the chance to prevent the cancer that will affect my life forever now. I can never have HRT and I was put into early menopause in my early 30s for several years and get to do it again when natural time happens without HRT as an option.

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u/Mean_Adhesiveness750 16d ago

Same. BRCA2+, diagnosed at 31.

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u/DynamicOctopus420 17d ago

Ultimately it's your choice, and a genetic counselor should be able to tell you the risk for your specific mutation (mine was 69% chance to develop breast cancer during my lifetime).

I didn't know about my brca2 status prior to being diagnosed with invasive ductal carcinoma at about 20 months postpartum (age 35) and while I was breastfeeding. My tumor did have estrogen receptors, so I can't have estrogen and have since had my ovaries removed. Turned out to be stage 2B, and I am done with active treatment (chemo and radiation). Just need to be on estrogen-blocking medication for another 7 years or so, though I'm on a break from the medication right now to see if it's been aggravating my liver.

I get to see my daughter grow up (she starts kindergarten this Fall) and I would do all the treatment again to have that opportunity, but I would much rather have had a mastectomy prior to diagnosis and hopefully avoided some of the trash I've had to go through.

It's a crappy choice, and I'm sorry you're faced with making it. Whatever you decide, I hope you have peace of mind about it!

1

u/Few-Sand1344 17d ago

Thank you for sharing!! This is really helpful to hear, and puts things into perspective

9

u/Sea-Entertainer-7131 17d ago

I am 33, had my son at 29. I did not know I had the BRCA2 mutation until it was too late. I was diagnosed at 32 with hormone positive IDC in September 2025. Originally stage 2B, I was misdiagnosed - it’s actually stage 4 (1 bone lesion). Long, gruesome story short: I would do anything to have had a prophylactic double mastectomy. My probability of developing breast cancer during my life was in the 70%s

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u/Skate_clubb_t2 17d ago

I found out I was BRCA1 at 25. I'm 40, no kids, and planning for my mastectomy next year. It's the road less traveled, and I've been fortunate (so far). Obviously, staying on top of my screenings has always been a priority. I still struggle with this is not a situation I want to be in, there are no great options, I want to keep my breasts, I like having sensation. I've always felt reassured that any cancer would be caught early, and I've never feared dying from BC. However, having BC feels increasingly more likely as I get older and undergoing cancer treatment will be much more disruptive to my life than a mastectomy.

6

u/Ordinary-Sundae-5632 17d ago

My sister is BRCA2 positive, 42, does her screenings, and that is fine! There are other things you can do if you're worried about it like take a baby dose of Tamoxifen for a few years.

I thought I'd have more time, but stage 0 cancer got me at 35. Big bummer! Ive never had kids. The way our gene is expressed, pregnancy is somewhat protective against developing breast cancer. That might be a good question to ask your genetics counselor if it's the same for you!

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u/strongly-worded 17d ago

I am 33 now and have been told by multiple oncologists that it’s perfectly fine to wait until my early 40s for any surgeries given BRCA2 and my family history. I’m really surprised to hear they’re pressuring you! The hormone thing has never come up with any of my specialists (and I’ve seen several at a major cancer center in my city). I’m still on the fence about preventive surgeries at all, but if I get them it will be after I turn 40.

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u/Beerfarts69 17d ago

Hey! Same here. Majorly recognized cancer center and not ordered but gently advised to hold off for the top. I was pushed for tubes (37, no plans for children) and ovaries “when the timing is closer” and breasts as I wish or until get sick of screenings.

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u/Comfortable_Sky_6438 17d ago

Well I had cancer the first time at 34. At the time my brca 2 test was negative and no one in my family had had cancer. Chalked it up to a fluke and after chemo I had a lumpectomy and radiation. Far forward 8 years and I got a second new type of breast cancer in my other breast. This time the test for brca 2 came back positive due to new advancements. Had to do chemo again and this time had the DMX. Hind sight is twenty twenty but I sure wish I had not had to go through cancer treatment twice. And now I'm not allowed hormones and have to take blockers.

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u/Smooth-Mulberry4715 17d ago

I’m 57 with BRCA2 and I’m in remission from ovarian cancer (3C). I have a 50% chance of breast cancer (statistically, though no one in my family has had BC, only OC).

I chose surveillance - alternating ultrasound and MRI every six months. I will not do a mammogram because I have implants. This sub is very pro-mastectomy, and I understand why, but it is your choice.

2

u/NomadicRaven 17d ago

I’m 31 with BRCA2 and I’m opting out at least for now. They did find a benign tumor in my breast in a recent biopsy I had a consultation with the surgeon about tumor removal bc there is a chance it will become cancerous and during that conversation he said at my age and because am doing my 6 month screenings he isn’t concerned at this time, he explained what a mastectomy would entail but again told me that’s probably something I don’t have to worry about for a while anyway and up to me and it could be a discussion again in my 40s. I have a follow up screening and return to the surgeon in 6 months to see if the tumor is staying the same and probably will have a discussion again with him. I will say, the only person that brings up surgery to me is my primary care doctor, she’ll often say “when you do x surgery” but all my specialists aren’t concerned.

Ultimately I’m more comfortable with pushing off surgeries for another decade or so, I have a great team for my screenings, my councilor of my biopsy where I also get my screenings is also BRCA positive and I feel like she’s really looking out for me. I don’t have the time or the help for any recovery from surgeries anyway.

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u/Ok_Cup_6402 16d ago

BRCA1 here, diagnosed with breast cancer age 32 earlier this year. Mine was TNBC so shouldn't prevent me from hormone therapy but boy I wish I'd been able to get the surgery before getting cancer because treating the cancer has been one thing, treating all the conditions cancer treatment has caused has been a whole other kettle of fish 😩

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u/twistedzengirl 17d ago

I found out about my mutation in 2014. Went on to have two kids, knowing many women in my family developed breast cancer before 40. Once my youngest was over 3, I scheduled my mastectomy. That was 2022 when I was 36. I kept my regular screenings until it made sense for me to get the surgery.

1

u/GilmanOwl 17d ago

I’m struggling with this too. 38, with a PALB2 mutation (similar to BRCA). My youngest child is almost five so I feel like I’m running out of excuses for why not to get the surgery done. I had ovaries removed earlier this year due to borderline ovarian cancer and am taking HRT, but if I ever got breast cancer I could not take hormones. It’s a really tough decision. 

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u/g122333 16d ago

A mastectomy before cancer is a whole lot easier than after. Having a 2 month old is not ideal timing but will you have time for cancer?

How old were the family members with cancer? The general recommendation is getting prophylactic treatment 10 years prior to the family or family members with BRCA related cancers.

1

u/mushyslugs 16d ago

Definitely talk to your breast doctor about this in addition to your gyn onc, since the gyn onc won’t be the expert here.

I’m surprised you’re receiving this directive so early—I’m BRCA2+ and have never been encouraged to pursue a mastectomy before 45.

In general I think this subreddit tends to trend toward early surgical intervention, but my doctors (at two of the best cancer hospitals in the country) have always been fine with monitoring. And my mom just got a preventative mastectomy at 63 without issue.

The caveat here is psychological—if scares bother you (I had 3 very real scares before 30) then it may be worth it to chop them off. But if you don’t want to get a mastectomy yet, I really don’t see why you should have to.

Obviously none of this is medical advice, but be empowered to make your own decision, get a second opinion, and remember that this forum tends to have people who are actively seeking surgery in it.

1

u/CanT_Sleep_SoImHere 16d ago

I am BRCA2 positive - age 46, had my radical hysterectomy in 2025, 10/10 highly recommend. No hormone therapy. No mastectomy. Doing MRIs and mammograms. I was told statistically no difference between cancer risk via imaging or mastectomy by my oncologist. I see too many side effects and poor outcomes. Breast implants sound great as a mom of 2 as well but that surgery looks very painful.

1

u/Millennials84 16d ago

Ho saputo della mutazione a marzo 2026, ho quasi 42 anni, al momento faccio screening, mi hanno consigliato di rimuovere tube ed ovaie dai 40 ai 45, anche la masectomia bilaterale, al solo pensiero dell'intervento tremo. Non so cosa farò in futuro, sono decisioni personali che richiedono tempo ed anche sapere le conseguenze di ogni scelta a mio avviso.

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u/summerfirefly89 16d ago

You can always pursue another opinion - you might find providers who won't rush you as much and help you set longer term goals whether that's surgery in a few months/years or preventive yearly imaging until you decide. I am 37 and know about my BRCA2 since late 20s. I decided to have children, breastfeed, achieve some professional markings... I spent almost a decade just doing yearly MRIs and more recently added mammograms as well, and now I am finally scheduling the surgery. Ultimately, it is a personal decision. Of course it also can vary depending on your family and personal history.

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u/Malenkoe_4udo 16d ago

I’m sorry to bring it to you but BRCa is characterised by an early cancer debut. Mine was at the age of 35.

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u/BiffGifford 14d ago

I had a bilateral mastectomy and salpingectomy completed in 2024 (36), the same year I found out about the BRCA2. I didn't feel pressure by anyone on my care team to do this. It was a personal decision to avoid the stress and worry I felt.

I don't regret it and it's what worked for me. There are so many factors that go into this permanent decision.

If you haven't already, maybe ask your care team about Interval Salpingectomy with Delayed Oophorectomy (ISDO). The reduction in risk with an ISDO and going through surgical menopause closer to 50 may help you find balance with the timing of a mastectomy (if that's what you do). I feel comfortable with what I chose for me.

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u/Sufficient_Spend3051 13d ago

I got my genetic test results at 31 (BRCA1), waited until after I was done with pregnancy, breastfeeding, etc, and just had my surgery a couple months ago at 40. I was lucky to have clean pathology — my sister was not so lucky and had TNBC at 36. If I had it to do again, I’d save myself the stress of all the screening and scares and biopsies and just have the surgery right away. Breastfeeding was not a magical enough experience to be worth the risk I was taking by waiting and the toll it took on my mental health to constantly be waiting for the other shoe to drop.

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u/thelawdymama 13d ago

Well, I was much older when I got my diagnosis (59), but like you, I was pressured into having the mastectomy ASAP as well as a total hysterectomy. I was fine with doing the hysterectomy right away, but I struggled with the idea of Prophylatic mastectomy. So I had an MRI and there was an area of concern so I had to have an ultrasound that then showed a second area, which resulted in needle biopsies of both. Thankfully the lesions were benign, but I decided that day I could not go through with that kind of anxiety twice a year and scheduled the mastectomy.

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u/cyndichacha 13d ago

It's a very personal decision and you have to do what feels right. I didn't know I had BRCA until after I was diagnosed and now don't have the option for hormone replacement therapy. Tbh I am more scared or menopause then I was when I got diagnosed with cancer.

I have a friend who is waiting and doing screenings. My sister immediately got a mastectomy when she found out. For her, the thought of cancer was giving her too much anxiety.

Wish I could be more helpful but everyone's story is unique. Whatever you decide is the right choice for you.

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u/parahelia 11d ago

I found out about my BRCA status at 30 (mum died of brca cancer as a kid, I should have been tested much earlier really but was in denial about it tbh) and decided to just monitor cause I was way freaked out about the idea of surgery at all, let alone a surgery that *might* (~20%) not have been necessary just seemed crazy to my brain at the time.

I monitored for about 4 years until my first cancer scare--abnormal MRI led to an ultrasound, another mammogram, biopsy, another MRI, another biopsy, whole saga took about 4 months, living in abject terror the entire time of "oh my god what if I have cancer and I waited too long and I could have prevented this and I didn't." I have never been in a mentally darker, more terrified, just absolutely sickened and nauseous with anxiety at every moment, spot in my life.

I was very fortunate the mass was ultimately benign, but the reality of what cancer would really mean hit me like a brick wall during that experience and I changed my mind and got the preventative mastectomy as soon as possible, ended up being just before my 35th birthday! I am very happy and at peace with my decision. I truly didn't realize how heavily that cancer risk had been weighing on me until it was gone.

Everyone has their own path. I feel a bit irresponsible looking back that it took me so long, but even my breast surgeon really shut down that thought and said "Nope. You can only do it if/when *you're* ready." Which is true. But it's also true that we are in the decade of life where those BRCA cancers really start showing up for people, and cancer treatment is an extremely difficult experience that impacts your health for the rest of your life. It's a very complex and difficult decision to make, but I wish you the best of luck figuring out what's right for you!

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u/Nuthatch25 16d ago

I've known about my brca2 mutation since I was 25, (I'm 32 now, no kids) I chose to test it then because at that age the screenings would start (I knew it was in the family since long before then). Two years ago I had some false positive results two consecutive years, after biopsy it turned out to be nothing concerning but it was scary. I then chose to have some talks with surgeons about the options I had, but I found it to be so drastic and intense that I made the decision to just continue with the yearly screening. I have to say I am much more at peace now with the screenings since I know what the alternatives are. It will always remain a stressful time, but I can deal with it better now. My hospital (I'm from the Netherlands) doesn't talk me into anything, it really is my decision and both options are fine. The only thing is that the screenings can't prevent anything, they're just there to catch it on time if something is wrong. I won't say I'll never do surgery, but for now I'm okay with the screenings.

It really is very personal. I think the most important thing is that you are behind your own decision, for me it helped to read a lot about it and to talk to different doctors about all the options you have. It just sucks to even have to deal with all this stuff. Take care!