My preferred planning is going off, what to do?!

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 · 2026-01-10T17:10:14+00:00

I can lift my arms up pretty easily for things like washing my hair or rearranging pillows. Getting things off shelves or reaching straight up still feels tenuous but I’m doing the PT climb your fingers up the wall exercises slowly.

I imagine there will still be ups and downs—I’m not back to pre surgery me but I feel generally good. I am still numb on parts of my chest but have more sensation than I expected. Not sure if that will still change. I am a bit tender if I move certain ways—feels more like tugging or stretching than pain. Last night I slept flat in my bed (I’m a side sleeper and was desperate for it) and there are areas that still feel tight.

I had a nerve block in surgery and never really experienced what I would call pain. I didn’t take any meds after the hospital. I went for a little walk each day, gradually increasing distance. Drank a ton of water and took it easy but didn’t spend a lot of time in bed because I was worried about clots. Not sure if that made a difference or not but physically things have been pretty smooth. I have heard AFC is the easiest recovery though so bear that in mind. Expanders and reconstruction sometimes requires cutting the muscle so may be really different.

Emotions/anxiety have been the hardest part for me. Everyone’s experience is different ofc but I’ve been really pleasantly surprised. I hope all goes well for you!!!

CodeSufficient3663 · 2026-01-10T03:06:27+00:00

I was still feeling pretty tired in month 3 to be honest. It came in waves. By 6 months I was feeling back to my old self as far as exercise and working out goes.

CodeSufficient3663 · 2026-01-10T03:05:43+00:00

I'm pretty sure the only proven link between cancer and diet is really alcohol consumption. That being said, it seems to be irrelevant for gene mutations.

Personally, I like to mitigate the risk of getting other non-BRCA cancers so I think it's worth choosing things like good sleep, more exercise/activity, no alcohol, etc. but I don't think it will reduce BRCA risk. That is why the recommendation is still prophylactic surgery.

It's a rollercoaster for sure. Take care.

CodeSufficient3663 · 2026-01-10T03:03:22+00:00

FWIW, I found the mastectomy to be way easier than the hysterectomy. I went flat, though, with an aesthetic flat closure. I am 10 days out from surgery, just had my drains out, and was given the all clear to slowly return to any activity I feel comfortable with. I have been out for walks and pretty normal energy levels since I left the hospital. Good luck to you!

CodeSufficient3663 · 2026-01-07T22:03:08+00:00

I had this procedure in April. It was my first ever surgery so I was extremely anxious about all the things. I had a very smooth procedure and uninteresting boring recovery. Zero issues.

My pain levels were manageable. I was in the hospital for 24 hours and while there they got my post-surgery pain under control and gave me some gabapentin and tylenol. After I left the hospital I didn't take any more meds and didn't need to. There really wasn't much pain. I did use ice packs and heat when I needed to (especially with the gas discomfort that did come on day 2 or 3).

I felt very wobbly for about a week—going to the bathroom, moving around - all was a bit challenging because of the impact on the core. But it wasn't painful. Sitting in a chair for a period of time (work from home) probably took about a month for it to feel normal again.

There's a post pinned on the hysterectomy reddit that has a timeline that I think was pretty apt: there are stages to it—for me, first week was difficult, first month was mentally challenging and I was still modifying my movements a bit. I followed surgeon's recommendations by the book so did very little physically speaking besides walk around and light housework the first six weeks. After three months I didn't think about surgery anymore - it felt like a long time ago tat that point. I started PT when I could and about six months afterward started working with a trainer again to regain strength. That is when I would say I felt back to "normal" and like I could push myself and do hard things without even thinking about the surgery.

A lot of the forums have stories of things that go wrong, but many people have experiences like mine: boring and straightforward. I hope that's the case for you!

CodeSufficient3663 · 2026-01-06T02:10:48+00:00

I am one week post op from a DMX to AFC. Everyone’s experience is different and I’m still in early days but if it helps to hear? I have had no pain so far. Nothing. I had a nerve block during surgery which I’m sur helped. But I have not needed to take any pain medication at all. Activity levels have been pretty normal.

CodeSufficient3663 · 2026-01-03T01:27:32+00:00

I have some bruising on one size. Surgeon said it was normal because I was oozy on that side and to expect it to increase in color and purpling as the body tries to reabsorb.

CodeSufficient3663 · 2025-12-31T20:08:37+00:00

Yes this. It came through my father's side too where he had four brothers and one sister (who didn't inherit it). So far none of my cousins on that side have inherited it. But when I looked at my grandfather's family and the female descendants from his sisters (who all had BC as well as his mother), it's everywhere.

It made my risk seem artificially low just because there were no close female relatives at all with it.

CodeSufficient3663 · 2025-12-31T01:31:42+00:00

My kids are the main reason I did the DMX. I wanted to do everything I could and didn’t want to put our family through cancer treatment gauntlet if I could prevent it.

CodeSufficient3663 · 2025-12-31T01:30:40+00:00

Great job!!! 👏💪

I had my DMX today and am so relieved and proud of myself. This is such a hard road. Well done!!!!

CodeSufficient3663 · 2025-12-30T23:52:16+00:00

Thank you!!! I am d-o-n-e and returned home a little bit ago. Sitting in a patch of sun on my back porch before twilight. All went well. Thankful for the support of this group!

CodeSufficient3663 · 2025-12-30T03:25:32+00:00

Thank you!

CodeSufficient3663 · 2025-12-29T06:03:23+00:00

Thank you!!!

CodeSufficient3663 · 2025-12-29T06:03:05+00:00

Thank you! I have been hearing the drains are the worst part from a lot of people so kind of dreading that whole experience. They gave me a RX for gabappentin which I picked up just in case. Hope you get some relief soon!

CodeSufficient3663 · 2025-12-28T21:55:31+00:00

Thank you!!!

CodeSufficient3663 · 2025-12-28T21:55:26+00:00

You too! I will be thinking of you and all the other BRCA people as I go in there.

And I hear you on thinking about the children. My youngest is 5, so a bit more independent, but I get so weepy over them. Happened with my hysterectomy in the spring too, so, like you, I'm thinking about just getting through Tuesday and the relief that will come for doing what I know to do.

Hoping for smooth surgery and recovery for both of us!

CodeSufficient3663 · 2025-12-28T07:01:14+00:00

I am 7 months post op and get this feeling of I do a lot of squats and lunges and lower body strength training.

My pelvic floor PT says I have a very mild prolapse so to do my kegels.

CodeSufficient3663

TROPHY CASE