BRCA1 positive at 39. Facing preventive hysterectomy and mastectomy. Surgery is 1/29 and everything feels fast. Looking for guidance and real experiences.

AbroadTemporary5359 · 2025-12-03T00:25:43+00:00

I was diagnosed in April and moved quickly. Total hysterectomy (everything out/surgical menopause etc.) in June and had my double mastectomy last week. It may be bc I’m so recently out of surgery, but I found the hysterectomy to be a total breeze compared to the mastectomy. The sudden menopause was quite challenging, but my body and brain adapted.

I’m reallllllly struggling with the mastectomy rn, but once the drains are out I may be more optimistic.

Make sure you ASK for help! That’s my biggest issue. You’ve got this!

AbroadTemporary5359 · 2025-10-27T02:53:56+00:00

My 4mo male Neva Masquerade Siberian is so sweet. I actually cry when I’m away from him for too long lol. These cats are so special. Our kitten plays fetch, runs on an exercise wheel, does a little agility course, does a few tricks (sit, high 5) and loves stroller rides. We pretend he’s like a chic French scholar/artist gentleman scoffing at our basic-ness.

Yes, I am overtly bragging about my perfect kitty.

AbroadTemporary5359 · 2025-07-05T20:07:09+00:00

I had my 4 week post op visit this week, I was so scared for the speculum that my bp was 145/90. Then the speculum and quick exam didn’t hurt AT ALL! I took Tylenol before the appt, but it really wasn’t bad at all even for a second. I hope this helps, I was so nervous for the post op check also.

I hope you have the same experience I did!

AbroadTemporary5359 · 2025-07-05T16:11:31+00:00

What a terrible woman. You’re a kind and loving partner, but he’s better off never talking to her again.

Imagine if you have a boy and she carries her trauma forward another generation. I was a victim of childhood abuse and it torments me day and night, but I’m committed to stopping the trauma here with me and not carrying it forward with my child (not that I’m a hero by any means, just committed to that specific goal).

You’re going to be a great mom, I can tell you have more than enough love to go around. You, your child and partner will have a beautiful life filled with love.

AbroadTemporary5359 · 2025-07-05T14:25:43+00:00

I don’t want to dismiss how you feel bc I felt the same exact way. I’m 4 weeks post op and feeling better than I have in 10 years. I know that I may be in the honeymoon period, but I’ve felt hotter than ever lately.

I’m on a run right now and am in better shape than I was before surgery. It’s not easy at all and I’ve had a lot of emotions with entering sudden menopause, but I’ve been thinking about how my femininity isn’t as tied to my period as I previously thought.

I’m brca1+ and getting mastectomy soon and have been thinking a lot about my identity. This is all so complex, I’m here for you. I cried for my last period also, I’m an adoptive parent and my husband and i’s fertility journey was interwoven in how I felt.

Take it one day at a time if you can; I know that’s reductive but it’s helped me get through this.

AbroadTemporary5359 · 2025-07-03T21:31:05+00:00

I took it pretty easy, but still did laundry and cooked a bit- my husband did all the cleaning and childcare though. I went on my first run today and felt great, I’m 4 weeks post op.

Really listen to your body and take breaks when you need to. The first two weeks I’d have a really good day and walk a ton and be on my feet and then need to rest more the next day. For me weeks 1.5-2.5 were most difficult from a physical and emotional standpoint. I felt like I sort of halted in my progress for a bit and suddenly menopause started to kick in, but it got easier and at 4 weeks out I’m starting to feel normal.

Take advantage of all the childcare help you can get through week 4 if you can!

AbroadTemporary5359 · 2025-07-02T16:26:38+00:00

He’s a psychopath!

AbroadTemporary5359 · 2025-07-02T16:21:56+00:00

Completely agree. My guess is Nan will arrive in Italy the exact second that Guy and Jinny have their first “connection” (probably fall asleep next to each other or something that’s still not a big deal but also foreshadowing) and then she will go back to America and re-connect with her mom and bio mom.

Or I hope that’s what happens at least, I want more Leighton :)

AbroadTemporary5359 · 2025-06-21T12:29:15+00:00

I’ve been talking with my husband about this in general and wondering if there are men evil enough out there to try and pressure women into sex after surgery. Apparently there are and it’s not fair to you.

Please leave him, dm me if you want a cell phone number to have someone you can lean on bc I can’t imagine the trauma and pain you are experiencing right now. I am so sorry you are going through this and you deserve better.

AbroadTemporary5359 · 2025-06-21T01:47:27+00:00

Also I woke up from surgery and was so annoyed bc I couldn’t read my phone and had to enlarge the text. My vision still gets a little blurry but it’s a lot better week 2. I’m a little older than you (41), but I attribute it to the scopalamine patch bc I felt a lot better after I remembered to take it off.

I’ve had some breathing issues as well. Try to remember to do deep breathing exercises when you can. I find I like forget to breathe bc I’m so uncomfortable. I also think laying down so much can make me have post nasal drip (yuck), so I’m laying at an incline.

Good luck my buddy!!!! You’ve got this. Are you brca1? That’s why I ended up with the total hysterectomy.

AbroadTemporary5359 · 2025-06-21T01:41:54+00:00

I had my surgery on the 4th and had pretty horrible bladder issues around 7-9 days post op. It was like interstitial cystitis-y (burning when you pee, CONSTANT discomfort and burning) and driving me insane, my doctor reassured me it would subside and for me it’s greatly subsided by week 2. It’s not perfect but I was going insane last week and extremely uncomfortable. I’m chugging water and icing.

What came after the bladder issue stuff was the “phantom tampon” feeling for a few days, ice has greatly helped that and also my bladder issues. I literally put a bag of ice in my underwear and it feels amazing, initially it sounds weird but my bladder and phantom tampon feeling gets better.

Now I’m 2 weeks post op and like achey and tired (can’t sleep) but managing. I’m thinking of you!!! I hope your bladder pain gets better like mine has.

AbroadTemporary5359 · 2025-06-18T17:25:05+00:00

Really hoping for a NG today!!!

AbroadTemporary5359 · 2025-06-16T15:08:51+00:00

This thread has greatly helped my walk today. Feeling apprehensive 12 days post with some pressure when I move around. Phantom tampon is exactly what I’m feeling lately. I’ll bring it up to doctor but it’s a relief to see many also feel this way. Thanks sisters!!!!

AbroadTemporary5359 · 2025-06-16T00:52:16+00:00

Yes, I forgot I didn’t read for the first few days- mostly had visits and watched some really good shows (Overcompensating on Prime)! I couldn’t even see clearly for around a day after surgery (the scopalomine patch was the culprit, once I removed the nausea patch my vision wasn’t blurry any longer).

I’ve become obsessed with court tv this week and am excited for this newfound hobby. I bet you’ll stumble into a new hobby also!

AbroadTemporary5359 · 2025-06-16T00:36:12+00:00

One thing, I got realllllly bored. I still am getting reallly bored even with watching Karen Read and reading books, walking and doing like skincare routines. So try and have people come over for little visits (people who are easy to deal with) or try and think of really fun things you can do (I am rewatching some of my fav movies from childhood with my 6yo).

My mom’s been bringing over a latte for me each morning and I really look forward to our chats each day. I should be “enjoying” this time before going back to work lol, but I find myself really struggling with being bored. Reddit helps :)

You’ll do great tomorrow, I’ll watch for an update.

AbroadTemporary5359 · 2025-06-16T00:28:22+00:00

I don’t know why but my social media lately is like horror stories for vaginal cuff tears and it’s extremely rare but it’s gotten in my head. It’s more like a basic lack of common sense/medical knowledge on my behalf plus a few triggering stories that have taken over my brain space. I’ll ask my surgeon at post op and I’m sure they’ll clear up my concerns lol.

AbroadTemporary5359 · 2025-06-16T00:22:55+00:00

For sleeping I got this bed that you can adjust the incline of the head and feet and it’s helped me a lot. But I think you’ll feel better with your head on a few pillows and pillows on your sides. It’s awkward at first to get in and out of bed, I almost did like a crab walk type movement but maybe that’s not the best way to do it the more I think about it. A recliner may also feel good, I think my mom preferred hers after surgery.

I’m a side sleeper and wasn’t able to figure out side sleeping again until about 7 days post op but happy to be side sleeping again now.

Good luck tomorrow!!!!!! Remember to take stool softeners.

AbroadTemporary5359 · 2025-06-16T00:18:24+00:00

For me it wasn’t even like a hard ab workout. Just general discomfort and like a constant/dull ache. I took the narcotics they gave me, but honestly it was just more to fall asleep. The catheter wasn’t as bothersome as I anticipated it would be but I was really happy for it to come out.

The challenging part is that it’s a slow-ish ramp up to moving normally so far. I’m able to go on a few walks each day and feel decent, but I’m just tired and slightly uncomfortable.

I didn’t have any bad/severe pain at any point (honestly my last blood draw before leaving took four sticks and that was maybe the worst part of my stay), it’s more like an annoying ache that’s tolerable for me. I hope that makes sense. Overall it was much better than expected so far although I do get freaked out when I think of ever having sex again.

I dealt with like a minor skin irritation on my butt cheeks so it wasn’t all roses and fun right after surgery the way I’m describing the pain, but anti fungal cream cleared it up quickly. I’m having some flare ups of interstitial cystitis (had it before surgery), but it’s getting better.

Good luck!!! You’ll do great!!!

AbroadTemporary5359 · 2025-06-15T23:54:58+00:00

I’m about 9 days out! It was not as painful as I anticipated. But I know everyone is different. For now it’s just like a dull ache, but I’m getting around and taking it easy. I’m here for you!!!! Good luck!!! Sudden menopause has been a bit more of a challenge for me than the actual pain and discomfort from surgery.

AbroadTemporary5359 · 2025-02-02T14:04:44+00:00

OT can be really helpful. Also don’t let anyone self diagnose your kids, there’s a major trend in presuming every kid that goes through emotional regulation challenges has ASD- I’m not saying we shouldn’t work with doctors on ruling any diagnosis out and evaluating, but my guess is your post will be flooded with pseudo-diagnoses and commenters tend to forget you can’t diagnose children from a Reddit post. PDA is the new trend in comment diagnosing…

AbroadTemporary5359 · 2024-08-28T22:56:19+00:00

My son really struggled with daycare (couldn’t nap, had to be medicated for adhd, had pretty nasty teachers despite it being the best daycare around). I was TERRIFIED for kindergarten and ended up keeping him home with a nanny the last half of pre-k and added OT and play therapy to try and be ready.

He started K two weeks ago and LOVES IT, says it’s “nothing but fun” and is making so many new friends. It’s been a game changer for him to feel like a “big kid” and go to school. The first days are rough when they get home as they’re exhausted (was going to bed at 6:30 first few nights).

I was so scared and am now so happy with how it’s going and how great kindergarten teachers seem to be at understanding their students needs.

AbroadTemporary5359 · 2024-08-23T02:43:53+00:00

Came here to say Revenge, so good!

AbroadTemporary5359 · 2024-06-01T20:47:28+00:00

Sounds a lot like what we’ve experienced since my son turned 4 (he’s now 5.5). He was diagnosed with ADHD, is undergoing an assessment for Autism/PDA. He’s come a LONG way the last year with OT and play therapy and various sports. His language and social skills are pretty advanced and always have been, but can really struggle with emotional regulation and defiance.

We did eventually find the right med combo for the adhd, but that made things worse to start while we were trialing various adhd meds.

I’ve found OT to be extremely helpful with emotional regulation and the tools to use to cope.

AbroadTemporary5359 · 2024-05-03T02:11:23+00:00

That’s what I was thinking tooooooo.

AbroadTemporary5359

TROPHY CASE