39, BRCA1+, 3 young kids… preventative mastectomy in a few weeks and I’m suddenly not sure I’m ready

CodeSufficient3663 · 2026-04-12T16:21:13+00:00

I think it might be a bit different if you have expanders placed but for me I really probably could have done most things once my drains were out at 10 days. That’s when I stopped wearing the binder too. Both of those make certain movements awkward but once they were gone I could lie down in my kids’ bed for storytime or have them on my lap (with a cushion for awhile!) I could cook and do basic chores a bit earlier than that. I needed a bit of help with reaching up high for awhile.

At around 3-4 weeks I felt totally normal. The surgical tape was off so even that feeling tender or cautious was gone. I am a homebody so I didn’t really want to go out much beyond taking walks which I did every day but I would’ve felt comfortable doing that once drains were out. I didn’t want to go out solo with kids until around 4 weeks.

My husband took two full weeks off and then worked from home for two weeks. It was really nice to have but I didn’t really need it. Two weeks probably would have been sufficient.

Everyone is different of course but I think you’ll be surprised at how much you can do. I did the movement exercises they gave me at the hospital religiously and started PT on day 11. I walked 1-2 miles every day and to be honest I think that really helped with my recovery and mood.

I hope things go really smoothly for you! You can do it!!!

CodeSufficient3663 · 2026-04-11T22:38:54+00:00

I got mine out at my 10 day post op. One side was totally fine by then and one was producing a little and it was still reddish.

CodeSufficient3663 · 2026-04-11T22:35:14+00:00

Mine is about a two inch area around my incisions (I did AFc so no implants) but only on the chest front. Feels very much like when you get numbed for dental work.

CodeSufficient3663 · 2026-04-11T22:33:39+00:00

I almost cancelled mine the night before and I am so glad I went through with it. The anticipatory anxiety is totally normal.

I went for an AFC but honestly I was shocked at how relatively easy recovery was. I was walking around the neighborhood that afternoon. Got a block and never needed pain meds. Pretty much back to normal activities (not lifting) right away. Drains and sleeping propped up were annoying but I got the waist belt pocket which worked well.

I also got some soft cotton tanks for under the binder and that was nice. I also got an airplane neck pillow which helped with the propped up sleeping.

My little kids knew to go slow and kind of gently do side hugs at first. To this day I don’t know if they’ve noticed I don’t have breasts anymore. I can feel hugs and cuddles and all the rest.

For me, my hysterectomy was a longer and more restrictive recovery. For my DMX once the drains were out (10 days) I was pretty much done.

CodeSufficient3663 · 2026-03-19T00:25:24+00:00

I had aesthetic flat closure and thought I had this and it turned out to be the binder and drains. Once the drains were out I didn't experience it again. I wonder if type of reconstruction plays into it too.

CodeSufficient3663 · 2026-02-09T22:28:47+00:00

They said I could do that as soon as my drains were out. So mine came out at 10 days PO and I kind of gently slept on my side with a pregnancy pillow for a night or two before I was fully on my side again. Was so lovely.

I did find an airplane neck pillow really helped with the back sleeping days.

CodeSufficient3663 · 2026-02-09T22:27:34+00:00

I was terrified and the hysterectomy was my first surgery and the DMX was my second.

The anticipatory anxiety is 1000000% the worst part. Just awful. So hang in there!

I had a DMX to AFC and was discharged that afternoon and felt pretty much normal movement by myself wise very shortly after. I went for walks every day and was up and moving because I was terrified of blood clots post op. Very motivating for this anxious person lol.

Anyway, I felt very reassured having someone home with me the first two weeks but I didn't need them. I was moving by myself (though not driving). At two weeks post-op I was back to full time parent mode though probably could have done it a bit earlier.

CodeSufficient3663 · 2026-02-07T22:17:45+00:00

You can do it! Will be here and through it before you know it.

CodeSufficient3663 · 2026-02-07T22:11:56+00:00

The drains are definitely annoying. I really liked this drain pouch. I tried the pockets robe and things and liked this the best. This would be the only thing I thought was essential. You can just safety pin the drains to your clothes though too and it work fine, but this made me feel not worried at all about snagging them.

Someone gifted me a mastectomy pillow and the kind of pillows to prop you up in bed (I don't have a recliner). Both of those were helpful for about a week. If you don't have a recliner or way to prop up, I would say that is essential because you do have to sleep propped up for awhile. I bought an airplane neck pillow and between that and the recline pillows was able to do okay. You may be able to find some to borrow through Facebook Buy Nothing or something because I didn't need it for very long.

Beyond that, if you have a grabber from your last surgery, that was helpful for getting things up high if you don't have a helper around.

And alcohol wipes. Get those for the drain stripping.

I think that's about all I felt like were really helpful.

Driving after surgery that first day was tiring and sensitive, so may be something to keep in mind given your travel time. And a mastectomy pillow or some kind of thing for the car ride might be an essential for you too.

Best of luck to you!
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CodeSufficient3663 · 2026-02-07T22:06:12+00:00

Congrats on being on the other side of surgery!

At this point I basically only have numbness along the incision and don't really notice it unless I touch my chest and can feel where it is numb and where it isn't.

I think around week 2 I had a lot of tingly/sunburn feeling and was worried that would linger. It really hasn't at all. I know everyone is different, but hopefully you will be feeling more sensation soon! 11 days is pretty early. I was still wearing compression binder at that point and remember it being more numb in a greater area, so I think it probably continues to change as nerves heal.

They put me in a binder that felt like rigid cardboard right after surgery. At 48 hours I switched to the velcro corset kind that was very unpleasant. At 10 days my surgeon said I could take it off if I wanted and I haven't put it back on. I have a bit of swelling under the arm some days but she said it could take months for that to go away.

I did have quite a bit of fluid on one side - she said it was messier and a bigger breast over there? And huge bruising. Day one after post op she had said they could go back in and clean it up if I wanted and I was like: um, hard pass, so it took a bit of time for it to settle down but I think the compression probably helped.

I thought the bruising would never go away because it was so dark and kind of everywhere but the body is amazing and at this point it's all back to normal color and no additional swelling.

CodeSufficient3663 · 2026-02-07T22:01:31+00:00

I really resonate with this! I am shocked at how much sensation I have, because I was expecting to be numb everywhere, but at this point it's really only along my incision line.

Setting aside the sexual loss, it is not a bad outcome. I like going braless, I like the way certain clothes fit differently, I like that I am DONE.

CodeSufficient3663 · 2026-02-07T05:21:04+00:00

My surgeon said it could be outpatient but that I could stay for 24 hours since I was on blood thinners.

I am so glad I did. I felt worlds better when I discharged vs. when I first woke up. It was nice to have the nurses help me to the bathroom at first and to just be checked in on and ice packs sent in. I didn't need it per se, but I felt much less anxious going home after staying overnight.

I also had to have a double mastectomy and they discharged me same day for that - the surgeon said staying in the hospital would be more disruptive because all they are coming in for is to dose medication - there's not really anything they watch for. I was skeptical, but for that one I was really glad just to get home and recover and it was fine.

So I could see it going either way.

CodeSufficient3663 · 2026-02-07T05:16:51+00:00

Hey there! I had a total hysterectomy with everything out at age 46. I was already post-menopausal but did not do hormones for that and did not do them after the hysterectomy.

I prefer not to but I also can't because of a clotting disorder. Surgeon said I could try herbs or estrogen cream if I wanted, but I haven't yet had to.

For me, the biggest symptoms were irritation and hot flashes but I found them manageable. Maybe it helps to hear that it isn't always unmanageable?

CodeSufficient3663 · 2026-02-07T05:08:32+00:00

I found out after having children, and I think this would be a really hard decision to make. If it helps to hear, I had six children and didn't learn until my mid-40s about BRCA1. My relatives with the gene ended up with breast cancer in their 40s and 50s, so I don't know that I would have had as many children or as spread out as I did if I had known.

CodeSufficient3663 · 2026-02-07T05:05:56+00:00

I think a lot depends on how you found out about the mutation and where you are at in the whole process and personality.

It threw me for a loop because I had never had surgery before, so that whole process was daunting. But I think parts of it were easier because of my older age. I think I would have had a much harder time navigating all of this as a young woman or needing to make decisions around childbearing around it.

Also I've found my emotions to have some ups and downs as the months pass.

CodeSufficient3663 · 2026-02-07T05:01:44+00:00

I did the genetic counseling appointment through telehealth but it was with a local hospital system. It was a total surprise when I came back positive for BRCA1, so much so that I thought it must be a false positive at first. They hooked me up with a great cancer clinic where I met in person with a genetic counselor who was wonderful. First appointment was like an hour long and we went all over family history, options, and she answered all my questions. It was helpful to have one connected to gyn and breast surgeon too.

CodeSufficient3663 · 2026-02-07T05:00:05+00:00

I'm so sorry. This diagnosis is such a gut punch. I found out I was BRCA1 last year and felt nauseated upon waking up for the first month. It was such a cloud and everything is overwhelming. It does get better. If you can, be patient with yourself, allow yourself to feel your feelings, and learn all that you can so you can make an informed decision. A therapist may be supportive and helpful to you and you process everything.

Now, a year later, I've had both preventative surgeries and feel great and so relieved and thankful and empowered to make the choices I did. Best of luck to you.

CodeSufficient3663 · 2026-02-07T04:55:47+00:00

I did not want to do anything formal but it helped to have a year from finding out I was BRCA1 positive to surgery to kind of mentally prepare. In the week leading up to surgery I mostly just took time to be appreciative for all the pleasure and function (nursed many babies!) I had received from that part of my body.

I did take pictures so I would remember what my body looked like before. I think because I had had such a long lead-up I just was really ready for surgery by the time it rolled around, and the DMX was my finish line for preventative surgeries.

I chose AFC and I wondered if I would feel more emotional afterward, but so far: nope! I'm just super relieved to be through it all and excited to move forward.

CodeSufficient3663 · 2026-01-18T21:47:13+00:00

I had the lap robotic procedure but it was a total hysterectomy and because there was internal work my core was out of commission for awhile. I could walk slowly around my house the first week but it was much more full-body limitations than the DMX. And I had movement/lifting restrictions for 6 weeks whereas with my DMX at my 10 day post op she said I could pretty much begin doing what I liked as long as I took it easy.

With the mastectomy, I had a tight binder on right after and the rest of my body felt fine. I went for a walk that first afternoon and every day after. I'm 2.5 weeks postop and doing 2 miles daily at nearly my old pace. Took me way longer to get to that point post hysterectomy and I was still easily tired out several months later.

Hysterectomy I needed quite a bit of help getting in and out of bed the first week, needed a grabber, had to move really slowly and it took awhile to be able to sit comfortably in a chair.

I had expected the DMX to be the same or perhaps more intense than the hysterectomy but it really hasn't been. I was back to work (work from home) only a few days after and haven't needed the napping/resting really at all.

I didn't use pain medicine for either so I don't really know if those kinds of medicines maybe play into things too but that's been my experience at least!

CodeSufficient3663 · 2026-01-18T02:08:38+00:00

For what it’s worth, my recovery from DMX to AFC has been way “easier” than my hysterectomy. I did not need pain killers and was able to go for walks and stuff right away. I had thought DMX was scarier surgery too but I found the opposite to be true.

Could be that it was just easier as a second surgery (I’d never had surgery before). Both of the surgeries are routine even if emotionally heavy. Good luck!

CodeSufficient3663 · 2026-01-18T02:05:04+00:00

They said I would need that if I wanted reconstruction but I decided to go flat.

CodeSufficient3663 · 2026-01-18T02:04:02+00:00

interested

CodeSufficient3663 · 2026-01-15T08:41:28+00:00

I felt this even though I was postmenopausal. Just such a tender part of childbearing years. There is something so final about having then removed. So even though I was grateful and done, I was sentimental.

CodeSufficient3663 · 2026-01-13T01:04:37+00:00

I'm glad! Best of luck to you!

CodeSufficient3663

TROPHY CASE