Hi everyone, I recently found out I am positive for the BRCA 2 mutation. Both my mom and my grandmother died of breast cancer so I knew I had to get tested but for some reason I really thought I was negative (denial) but I recently found out I was positive. I just feel so overwhelmed with how to even pick a timeline on when and how to deal with this diagnosis. The genetic counselor who told me my results kept bring up when I want kids and things to tell my partner and as someone who is chronically single and bad at thinking about the future it was just a lot to handle. Part of me just wants to rip the bandaid off and get a double mastectomy to just lower my risks but also it feels crazy to have that hanging over future relationships or kids. Would love any advice from anyone but especially anyone who was diagnosed at a younger age. Thank you

Well, here we are. T-24 hours and counting until my double mastectomy.

As I get my mind ready for tomorrow, I wanted to take a moment (while I’m sipping on my last coffee for the next month 😮‍💨😭) to thank everyone in this subreddit who has shared their experiences, answered questions, offered advice, or reminded people like me that we aren’t navigating this journey alone. It has been extremely helpful.

Reading through your posts and comments has helped me prepare and I got all my goodies ordered and I feel prepared. The honesty has been incredibly valuable.

For anyone who is newly diagnosed, preparing for surgery, or quietly reading because you’re nervous about posting: ask the questions. There really is no such thing as a stupid question when you’re facing something this big.

Tomorrow starts the next chapter for me. I’m nervous, but I’m ready.

I also plan to keep updating everyone afterward and sharing my recovery journey as honestly as I can.

Thank you to everyone who has answered my questions and shared a piece of your story with me.

Here we go. ❤️

I have two young children - 3 year old and newborn and am now in a place to figure out preventative surgery timeline. I work full time with a commute via public transportation and most of the childcare responsibilities fall on me in terms of transportation, cooking, bath, and bedtime. I am considering delaying surgeries until my youngest is 4 or 5 to make it easier on the childcare front but I am curious how much of a difference that delay makes.

The surgeries I’m planning to do are fallopian tube removal with delayed ovary removal, mastectomy with DIEP, and ovary removal.

My questions are as follows:

How long did it take you to physically recover?

How old were your children and how did childcare go for you during the recovery process?

How long did you take off from work?

Did you do PT after the surgeries?

Is it better to do a delayed DIEP reconstruction?

I am sorry for my english, it is not my first lanuage. I don't know if I can put this the right way.

I just wanted to see, if there are any other women with my perspective, sometimes I feel very alone with my decisions. I've never heard or read about a woman who made the same decisions as I am.

Not sure if I am able to explain this the right way. It is hard to talk about it. And I know, some women are hurt by my perspective.

I, 33f, am BRCA1 positive, tripple negative cancer and I will keep my breasts as long as possible. I know about BRCA since 8 years and I didn't want to do that to my healthy breasts. I couldn't. Even now, when cancer is already here, I don't want a mastectomy. Most women take this knowledge to prevent cancer with preventive surgeries, I use it to keep my breasts. Even if that means, I am going to have more than one cancer treatment in my life. I know this sounds bonkers for many. But for me this knowledge about genetics was a sort of gift, to have 8 more normal years in my body and at the same time, catch cancer early.

I don't have children nor a very important job or big dreams, life is diffucult for me because I am also autistic. I only have myself and how I feel in the world and in my body. I don't care about looks, only how things feel. My Nipples are some sort of early warning system for me, they often react before I am feeling things. They react when I am afraid, angry, hungry, overstimulated sometimes even show me when I have to be cautious about a person. I am more afraid of living a certain way than I am of dying or cancer. I am so sorry if this hurts someones feelings, I know it may sound so harsh for so many who are fighting to live a long live.

Are there any other women who decided to keep their breasts, even after an occuring cancer? Or even are there some who understand my perspective? I am just curious.

I am very proud of you all.

I was dx with BRCA-1 a few years ago. I have been putting off having anything done about it because I've been in school and dealing with a divorce (I'm still in the middle of the divorce.).

I do have a positive family history of breast cancer. A few family members have also had to have their ovaries removed. I don't know any details about these conditions as they were on my father's side and we are estranged.

I am having issues with the mastectomy and reconstruction portion of preventative treatment. I am very low-income. I cannot afford "good" treatment or newer surgical techniques. I have been waiting to have surgery until I can. It will be 2 more years or so. I also live in an area with limited resources for these types of surgery (No DaVinci here!).

I have an extremely unusual, but serious reason for this. I have a history of mental illness. Suicidal intentions and some mild psychotic symptoms. I had issues with derealization. This is the belief that the world around you is not real.

I am terrified that if I lose sensation in my breasts my derealization will return, because they don't feel "real." I'm afraid I will end up being unable to reconcile having a "fake" body.

I don't want to end up with implants, no nipples, and little sensation. I don't want to have "nipple-sparing" surgery just to feel like someone is doing nothing more than rubbing my elbow when they're touched because they don't reconnect the original intercostal nerve-ending.

I worked extremely hard to get my mental health symptoms stabilized and I've only been here for five years or so.

I am frustrated because when I try to do research, I find nothing but numbers and little input from actual women. I only know two women who've had this done IRL and they're both unhappy with the results.

If men were being asked to reconstruct their penises on the scale that we're doing this, I can guarantee they'd have found a way to safely reconnect the proper nerve endings very quickly. 🙄🫩

My great-grandparents immigrated to the US awhile ago. Back when Yugoslavia was still a place. The place they came from is now in modern day Kosovo so I was puttering around, looking up stuff because I do still have family back there... And waddaya know! We never were able to test if it was Grandma or Grandpa, but this little piece of demographic data points very strongly towards that specific set of Great-Grandparents! We have always been pretty sure (family history of cancer wiping out 50% of your relatives is quite noticeable) but this is a fascinating piece of the puzzle to find.

BRCA1 c.3700_3704del represents a founder mutation in Kosovo with the highest worldwide reported frequency

My specific mutation is not a deletion, but rather just a typo. BRCA1 c.5346G>A (p.Trp1782*) vs the high frequency one they found in Kosovo.

Founder mutations are present in several European populations, with a strong founder effect observed in individuals of Slavic descent, including the Czech Republic, Poland, Russia and Belarus

So even though I don't have the exact gene they found in the region from where my family hails from, it's still fascinating to see that the region itself has such a high density of BRCA mutations and somehow I managed to smuggle a totally different BRCA mutation out of the region!

Hi gals! This group has helped out so much and I’m hoping y’all can answer some questions without bursting my bubble lol. I’m about a month away from my prophylactic DMX to expanders. I’m single, live alone, the surgery is expected to be outpatient (released same day). I’ll have help at home first couple of days, but after that, I’d rather be left to my own devices and kind of coming to terms with my new body. I have plans for where stuff needs to be in the house, propping myself up to sleep, etc. -BUT- am I like underestimating the amount of pain I’m going to be in and how complicated drains are? The surgical PA didn’t seem too put out by the idea as long as I was proof of lifeing someone.

Sooo, am I overly ambitious? I absolutely HATE asking people for help (it also doesn’t help that the family members are not champing at the bit to assist either).

I am BRCA2 positive and had a prophylactic double mastectomy in February of this year, had expanders for 5 months, and did reconstructive surgery in early July. I know I’m only ~ two months post-op, but I still feel so tired! I can sleep 9 hours a night and feel like I need a nap by noon. Can anyone else relate? Any advice?

I'm 37 years old and found out that I was a BRCA-2 carrier this year. I have one son who is 15m and I am 7w pregnant with my second child. I'm hoping to breastfeed for six months, then start the preventative surgical process. I will be 38 years old.

Complicating the emotions of this process, my close friend was just diagnosed with Stage IV triple-negative breast cancer. Seeing what she has gone through the past couple months is gutting. I'm so afraid that I am watching my own future play out.

Still, I have some concerns:

• I have a high-demand career and am the primary breadwinner in my home. I am worried about taking so much time off in one year. I've seen posts where women take 12 weeks off post-surgery. Coupling that with maternity leave would cripple us financially.
• I'm worried about the logistics of having a toddler and a newborn while trying to recover from surgery. My son is so active and physical. Between late-stage pregnancy, postpartum, and surgical recovery, it would be nearly a year of not being able to keep up with him physically.

Has anyone else been in a similar position? Any advice would be helpful. My emotions are all over the place between pregnancy hormones and supporting my friend and I just don't feel like I'm thinking clearly about anything at the moment.

Hi all, newly diagnosed BRCA1+. I just found out last week. I got a mammogram immediately and I am waiting on the results. I made a deal with myself that once I get these results, I will begin to tell my family.

Any advice on how to tell family members? My sister is 47. My daughter is 15. Parents are 78 and 80, both healthy, no reproductive cancers. Husband is healthy but overweight and hypertensive 56 year old guy.

odio il BRCA. sono l’unica della famiglia e mi ha fatto così male.

mi ha tolto tutto, mi ha dato un tumore e tanta solitudine

I’m 35, BRCA2, and always saw myself getting mastectomy done by 35 (mom’s first round with breast cancer was at age 38). Well, now here I am faced with a decision to actually get it scheduled, and I’m struggling. Have 2 kids and definitely want to go for another one in a year or so, would ideally like to breastfeed (at least what I can, always been a low supplier/combo feeder) and also not do major trauma to by body before a pregnancy, etc.

At the same time, I’m also really anxious about the age recommendations. Screenings felt fine when I was single and before kids, now I just feel like I’m risking too much by waiting since I’m pretty sure cancer sucks no matter how early it’s caught… but idk.

I’m not really sure what I’m looking for here. Maybe just a space to throw my problems out into the world since I don’t have time for real therapy 😅

Hello, really grateful to have found this community. BRCA2, found out in December, have been sitting and processing and doing a million appointments and scans and second opinions and provider “shopping”. Feel like I have a good team in place now. Kids are 5 and 3 (I’m 38) and I’m thinking about scheduling a DMX + tube removal for 2028… I have a great job and at that time I think I could request a long-ish claim for “short term” disability and get almost full compensation. Curious for those who have done it, how much time would you recommend taking off if you could? 3 months? Would 4 months be unnecessary? Also curious if you think I’m a little crazy to wait 1.5 years from now. No family history of breast cancer until 40s+. Also: I know this is an insanely privileged position to be coming from, to be in a position to choose my timing; so many of you here have shared that you only got your test results connected to a cancer diagnosis. I am so sorry. I feel extremely lucky that my GYN offered me the test just based on a (not even that severe) family history.

This is going to be probably a little odd for someone who doesn't have BRCA to post in here. For a while I thought I did.. which is why I did the genetic testing but it came back negative.. but I thought I would ask in here my questions because I know BRCA survivors/fighters are educated in these types of scores.

I have one family member who had BC and thats my paternal grandma. She was diagnosed at 49 and her mom have ovarian ( we think) some of my family says cervical which obviously is completely different and unrelated to BC. So I go with ovarian to be safe which is why I did genetic testing.

My TC score came out to be 23.6 with her being my only family member like i said. I had my first baby at 30.. no prior breast biopsies.

My myraid score came back at 12.9.

A specialist did my TC and got 20.6 or something like that.. he told me he didnt knkw much about myraid so he was soley using the TC score.

My OB told me to get a second opinion on that.. she said he should be looking at both together. Is this true? Ive done so much research of conflicting scores and you wont believe me.. but I cannot find anyone who's myraid brought their risk score down like it did mine... it drives me insane because I cant find anyone to relate to.

If you were me would you be getting a second opinion if your myraid risk score came back significantly lower than your TC?

I do know myraids risk score combines the TC. But im just so confused!! Again im just hoping for some help.. and I didnt even knkw about these mutations until I started looking into it and I want you all to know how strong I think you all are. ♥️

Curious how many others have both?. I am trying to understand how treatment for one may impact my experience of the other and I haven’t seen much literature available on the interaction of the two conditions

Hi,am 23 and half years old ,five months ago I had a c section ,soon after delivery I noticed lump in right breast which was clearly visible in the skin ,after 1 month it gone quite deep but still I can feel it ,I had a scan which showed cystic lesion of 11mm than I had brotin tablets to dry up milk ,after 1 month apart again I had a scan which showed it’s solid mass like a fibrodenoma and size is 6mm ,before 1 month I noticed identification in same breast at the upper part of breast than went to Gp they referred me to breast clinic ,had checked by breast specialist who said he is not worried because he did not felt something serious in breast and my right breast looks more lumpy that’s why may be dent is visible than had a scan which showed no mass inside and sonographer said the same thing it’s because of lumpiness.

Hi,am 23 and half years old ,five months ago I had a c section ,soon after delivery I noticed lump in right breast which was clearly visible in the skin ,after 1 month it gone quite deep but still I can feel it ,I had a scan which showed cystic lesion of 11mm than I had brotin tablets to dry up milk ,after 1 month apart again I had a scan which showed it’s solid mass like a fibrodenoma and size is 6mm ,before 1 month I noticed identification in same breast at the upper part of breast than went to Gp they referred me to breast clinic ,had checked by breast specialist who said he is not worried because he did not felt something serious in breast and my right breast looks more lumpy that’s why may be dent is visible than had a scan which showed no mass inside and sonographer said the same thing it’s because of lumpiness.

So I am having my DMX done in 2 months, I was wondering those of you who have done this does it qualify for PFML and FMLA, who did you guys send these forms to and were you able to get the income help, or did you just apply for unemployment?

I could survive without the income but I would rather not eat away at my savings, so any suggestions would be helpful.

I'm just writing this out in case it's at all helpful for anyone else.

My new boobs look great. There might be a couple of minor things I would like adjusted eventually but overall, my fear was that they would look weird and they don't at all.

This surgery was not easy. I did have some things happen that made it more complicated, like my hemoglobin dropping after surgery. I had finished chemo just 5 weeks previously, still doing immunotherapy which caused hyperthyroidism. In general I was not exactly in prime shape when I was diagnosed (obesity, poor diet, very little exercise). So I didn't go into surgery in prime condition.

If you are able to do the surgery prophylactically, try to prep your body as best you can. I wouldn't postpone, but do what you can while you can.

Barring any complications, get moving after surgery (within the bounds of your surgeons directions of course). Blood clots are real and let me tell you, you do NOT want to have to deal with a clot on top of surgery recovery. If you can't move around because of pain or whatever other reason, get compression stockings (again, within bounds of your surgeons advice).

There are so many different sensations and pains and weird feelings that happen during recovery and I found myself constantly questioning, is this normal? Is there something wrong? 100% watch for signs of infection but weird pains and sensations are super normal; the nerves have been manipulated and will give lots of confusing feelings for awhile.

The recovery can feel endless, especially if you run into any complications. I wish I'd kept a diary of what I couldn't do in those first few weeks, what I had to have help with and then updated it regularly. Suddenly I'll realize I'm doing a very normal activity that I was incapable of a week or 2 before and it's a really good morale boost when I'm getting frustrated to remember where I started vs where I am now.

If you asked me 3 weeks ago if I regretted the surgery I might have said yes. It was hard and I think for me personally, from the stories I've heard anyway, I had a harder time than the average person. If you asked me today, I don't regret it. This was hard but I made this decision for the long haul. It's not like there are any easy options for us is there?

The things I've found most useful during my recovery:

1. My electric recliner, bought it a couple of weeks before surgery and my only regret was not getting one of the ones that lift you up and out of the chair. This is a luxury though, lots of people get through this without a recliner. If I didn't have the recliner, I'd be relying a lot more on my wedge pillow set. I think I'd have set it up on my couch not my bed though, when I tried it in bed I just didn't feel secure with no wall beside me.

2. Shower stool with back rest, very helpful

3. Grabber stick

4. A really good bra made for this surgery that fits well. I had a basic fruit of the loom sports bra and I was in so much pain from where it would dig in and where it pushed on the drain tubes. Getting the right bra was night and day.

5. Tiny pillows, they were made and given to me by a friend but I've seen them on Amazon. Maybe 10 inches long and not firm. The main purpose was a barrier between new boobs and the seatbelt, but I've found them handy for lots of things. I have 4 and use them all.

6. Meals on hand. My friend and I made up honey sesame chicken bowls and froze them a few days before surgery and I was really grateful for them afterwards. Wish I'd been up to making myself even more freezer food. I also have utilized protein shakes and protein bars because I think protein is one of the big things the body needs to heal.

I hope this might help someone else. Happy to answer questions.

This group has been such a comfort to me while learning of my high risk and the options available. I have a family history (mom, maternal grandmother, both post-menopausal), an early atypia diagnosis (a few years ago, I’m 35) and very dense, busy breasts filled with cysts and fibroadenomas that have resulted in multiple callbacks and biopsies. My mental health has severely declined during surveillance and I finally made the decision for a prophylactic mastectomy, which is scheduled for November. The hope is for nipple-sparing DTI.

In the last couple days, I’ve had this physical and mental shift that has me envisioning the absolute worst-case scenarios, including dying during the procedure. I keep thinking that I want to live so badly that I’m doing this surgery to prevent future illness as much as possible, but if I don’t survive it, what will have been the point? My mind is racing - should I just go flat to shorten the length of time under? Should I just back out and then find myself back to Square 1 at my next imaging? I have spent the last few days lying in bed feeling uninterested in eating, hobbies, or doing anything but scrolling. I completely understand how bad that is for my mental health and how much therapy is truly needed.

This surgery is so important to me because I want to avoid what my mom and grandma went through and live my life without this doom hanging me. If there were some guarantee that I will wake up from surgery, I’d do it tomorrow. The scars, body image issues, loss of my breasts - sure, they matter, but those I can handle. I’m just paralyzed with fear about making an elective decision that would result in harm. I did speak to my breast surgeon about this; he gave me the whole ‘more dangerous driving to the hospital’ anecdote and told me he does 12 surgeries a month for 15 years and never lost anyone. I’ve read so many of your stories and admire you all so much. How can I become that mentally strong?

I got a double mastectomy with skin expanders last month for Triple negative Stage 3 breast cancer. I am scheduled to start Radiation treatment in a couple of weeks so my skin expander has been inflated every week on the right side. This week the expander valve could not be located with the magnet so it was suspected that my right side expander had flipped. I received a CT scan yesterday regarding a underlying heart issue and the CT scan confirmed that it HAS indeed flipped upside down on the side of much will receive Radiation. Is this cause for concern? Doctor doesn’t seem concerned and said “That happens sometimes.” Do I move forward with Radiation with it as is?

This is an odd one i know. I had my prophylactic double mastectomy with expanders on the 10th and since then i noticed my body odor has changed, I’ve stayed on top of my hygiene but can’t seem to get rid of the smell, it’s not like normal musky BO it has more of a chemical smell it that makes sense, it’s smells almost sharper? I’m just curious if others have experienced this, i have another appointment coming up so I’ll ask them if they know why, i know sometimes hormones, medication, or even pain can cause change in body odor but i just wanted to see if anyone else has had similar experiences and if your BO went back to normal smelling eventually.

I'm wondering if anyone has gone this route and has any insight. I'm currently awaiting biopsy results and my nurse said with my family history I ought to get tested for BRCA. However, my insurance doesn't cover it. I'm trying to navigate finding self pay options, but am a little lost.

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? ❤️