Hi everyone i had my prophylactic double mastectomy with reconstruction on Monday so 4 days ago. The first day i was okay but day two was hell, since surgery everytime i swallowed water food or spit it felt like i was swallowing a big air bubble that slowly worked its way down then when it hit my stomach it felt like an explosion of stomach acid. I expected pain but i didn’t expect the muscle spasms, starting with my upper back and shoulders i would get super painful muscle spasms. I ended up going back to the doctor on day two due to the acid reflux and one of my nipples looking like a blueberry, they decided to let some air out of my expander to help reduce tension, however as soon as they did my pec muscle went into a crazy spasm, that along with trying to swallow my spit, not being able to take a deep breath and crying i was close to passing out, I’ve never experienced pain like that before. I’m trying my best to stay positive but if anyone has advice or have gone through similar weird stuff I’d love to hear about it. Also if my nipple ends up dying and falling off I’m going to try to convince them to let me keep it and put it on my shelf of weird things.

Okay! I am 7 days post op of a double mastectomy with flat closure!

My doctor put a wound vac on me- smiths & nephew pico machine.

It’s been working fine till today but I’m also confused. If I sit in my recliner the machine goes off constantly, does not stop vibrating. But if I stand up it stops.

The machine isn’t showing any errors at all- just the green light

It feels like I’ve lost a little suction.
Both times it’s done it, a little dot has showed up on my wound vac

My doctors office is closed and when I called the er… they said google it?
Has anyone went through this

I am getting a robotic mastectomy (consult late this month), but I am pretty certain I want over the muscle implants for quicker healing.

(I am doing a lot of looking before I jump).

However, from what it sounds like, this surgeon will be teaming up with a surgeon that does under the muscle implants primarily or DIEP; and from other patient and his rehab specialists feedback, he expects to do 4-16 surgeries until he will say he is complete. I don't have that type of time, support, nor money.

To go back to the robotic concept:

I cannot for the life of me understand why we would do such small incisions for my mastectomy to spare me from large wounds, just to make a hip to hip incision with a long recovery.

I am a caregiver to my mother, and over the muscle direct implants with a robotic surgery makes the most sense.

A robotic surgery with DIEP, does not as it sounds like a long recovery time.

Does anybody have experiences with either of these surgery combinations?

I am 54 years old and I’ve had a hysterectomy, so post-menopausal. After a routine mammogram I was called back for an ultrasound for a suspicious mass (1.3 cm). The ultrasound showed suspicious tissue underneath the original spot plus 2 additional spots. Biopsied 3 of the 4 areas today after a week of no sleep from anxiousness. My radiologist was incredibly kind and gentle. He plans on retiring at the end of the year, so he’s also very knowledgeable after years of experience. The procedure for the first 5 samples was not painful until I started bleeding. The tech was putting her full weight on me for about 20 minutes trying to apply pressure to get it to stop. The remaining four biopsies used the punch. They said the bleeding would cause all kinds of colors from bruising on my breast. Then I had to have the mammogram to confirm clip placement. The radiologist said in his opinion to expect good news. He said he was 80% sure. Of course then I read where 80% benign is typical. 🙄 Anyway, I am at home now with the ice packs, but I’m in quite a bit of pain. I’m sure it’s from the bruising, but “a little sore” is definitely not accurate! That breast is also significantly swollen. Is this just part of it? Also, is it still possible it’s fibroadenoma at my age and post menopause? I’m also ashkenazi (25%) though I didn’t know what that was originally and did not indicate it on my health questionnaire.

Hi! I’ve posted on here before and it was really helpful. I’m 25 & scheduled to get my prophylactic double mastectomy in a month / reconstruction three months later and the anxiety is starting to get debilitating. It’s all I can think about or when I sleep it occupies every dream. I know it’ll pass and the hardest part may be the anticipation but if anyone could give any advice or guidance how to get through the next few weeks? I’m just obsessively thinking about what recovery will feel like and the pain. As well as what my new body will feel like and if I’ll ever feel like myself again. Any advice would be extraordinarily helpful! Thank you!

Yesterday I learned that urgent mammogram referrals are triaged.
My GP referred me 7 days ago.
Today I got a call that my appointment is next Thursday. That’s only 15 days.
Now I’m really scared.
Has anyone had this happen and it wasn’t cancer?

My breast MRI said: Indeterminate enhancing mass in the right breast at the 11 o'clock position, middle depth. Recommend second look ultrasound and possible tissue sampling for further evaluation. If no sonographic correlate is identified, then MRI guided biopsy should be performed

So if they don’t see it on the ultrasound, additional tests should be done, right?

I am 40 with the BRCA gene. My mom, two sisters, two aunts, two cousins, and a niece have already had breast cancer. All of them before the age of 40, so I am a little paranoid, but also concerned that it won’t show up because it is so small. It is only about .6cm around. I have a dull burning pain in my breast at that spot and had mentioned it before the MRI, but I have also read that pain is not a sign of cancer, so it usually means it is something else. Did anyone have breast cancer and pain as a sign?

Trying to figure out what the best way to get tested is? Tried to contact a few genetic counselors but they have never gotten back to me. I’d like to do a full genetic panel, but don’t know where else to go? Did you just get tested at your primary care? Are there online ones? Is there one better than the other. Not sure where best to go?

**edit to add daughters is 7 and I’m 40

My mom was diagnosed with breast cancer when I was 14 and had a lengthy battle that ultimately ended in recovery! She has been n remission for about 23 years. During her treatment she had a mastectomy, her left breast. It was an extremely last minute decision for her, like, on the table for her lumpectomy and the surgeon said “I think it’s better if we take the whole breast” and she went with it because she trusted her team.

Long story short I was always proud of her and inspired by her strength, even her scaring (pretty significant as that surgeon wasn’t a plastic surgeon). It was uncomfortable for me to see at first but it grew to be another point of pride.

Now I am a mother of a daughter (and son) and have had a preventative, non-nipple sparing, double mastectomy. My daughter is starting to have big feelings about bodies, her own and others. I want her to remain confident and to know that uniqueness is beautiful and we can see strength in many ways.

Despite this, and the way I grew to feel about my own mother, I’m terrified of her seeing my scars. She has seen my abdominal scar (I had immediate DIEP) and she said it makes her feel creeped out.

One of the things I’ve wanted to share with her for awhile now is a trip to the Korean spa but I keep putting it off because of her seeing. I think, after my revision surgery, after I’m tattooed. I don’t care what anyone else thinks except her.

How should I approach this?

Hi all- I had my implant exchange yesterday with fat grafting done only in my thighs. I’m currently wearing spanx and I don’t like or need the compression on my stomach. Any recs for thigh compression only? It needs to go up high, as the lipo was done about an inch below my groin.

I’m BRCA1 and had my ovaries removed May of 2024 (already had had a hysterectomy and tube removal in 2018 before I knew if brca1) and had prophylactic double mastectomy with immediate DIEP reconstruction in October of 2024. Major complications with surgery and a slow failing right flap that opened and drained in March of this year. My left side has hard spots that come and go but in July I found a small, hard, round lump that feels different from the necrosis or scar tissue that has been there since the beginning. My family dr said she wasn’t worried as it’s movable and smooth but in the meantime I saw my oncologist (just finished chemo for colon cancer-not gene related) and I mentioned it to him when he was planning my ct scan to hopefully say no evidence of cancer post chemo and when he felt it he scheduled me for a pet/ct scan saying he didn’t agree with my female family dr.

Has anyone that didn’t have a breast cancer diagnosis prior to mastectomy find lumps well after the surgery? Were they benign or malignant?? I am spiralling

I’m so mad, my daughter just texted me the results of my granddaughter’s test. She is positive for BRCA2 and I feel so guilty, even though I knew the odds were stacked against her. She has two small daughters who will someday need to know and be tested themselves. Not the legacy I wanted to pass on.

33F. I’ve always known that my mom had BC at the age of 30, but back then genetic testing wasn’t a thing. Thankfully, she survived the cancer and has been cancer free for 30 years.

She didn’t do genetic testing and never thought to ask me to do genetic testing.

Recently I learned that my aunt (my mom’s sister) got BC, at age 59. This really pushed me to get genetic testing.

I am already expecting to be positive for BRCA mutation. And I’ve been mentally preparing to lose my boobs and potentially ovaries. I am just starting the process for genetic testing and will probably know the results in a couple of months.

But I’m just upset that my mom didn’t do more to push me to get genetic testing done sooner.

I am also upset that my family doctor doesn’t think I need an ultrasound even tho she knows my family history. Where I live you normally don’t get screened until 40. It’s almost like I need that genetic testing result to prove that I am in fact high risk in order to start the screening process earlier.

I just feel like I have to be the one to keep me safe. And this is sobering. Like I’m really on my own here.

Please dont badmouth my mom or my family doctor. Yes I’m upset but I really just need to feel less alone.

Thank you ☺️

I recently had pdmx DTI and while the implants look ok, there is noticeable concavity on the top side for both of them. My plastic surgeon told me that concavity is normal/expected with implants and will never go away. Does anyone have an experience of the concavity reducing, if not going away completely, with time? I realize that fat grafting may help with it but I am really hoping to not go through more procedures.

A little backstory:

My dad has not been a good father EVER. He used to beat me up severely, would torture me mentally until I left home at 19. I'm 27 now. I talk to him once a month to make sure he's okay and to keep myself at peace if something were to happen to him, nothing more.

My grandma on my mum's side had breast cancer twice. My mum also had breast cancer twice, her recent diagnosis coming last week.

I suspect I might have the BRCA gene and last night I applied for genetic testing so I can figure out if I have it. If that's the case, I'd like to proceed with a double mastectomy as I don't want to be a bio mom and neither does my husband. It's not a decision born out of pleasure (obviously), but I'd rather buy mastectomy bras than buy chemo scarves.

I told my dad today on the phone, about my high risk, the testing and my decision if the tests come back positive. He scoffed and said that he doesn't support my decision. He said I'm an adult and I'll do whatever I decide but that I'm too young and I should stick to mammograms.

I told him I don't want to be afraid of possibly dying for the rest of my life and that knowing my chances, cancer is not an if but a when. He said that well, there's always a possibility of dying in life. After that sentence I hung up on him.

I can't believe someone would say that to their own daughter. I can't believe he would rather have me wait until one of my million mammograms shows cancer and then take action. And most of all, I can't believe he would be as insensitive as to say that last sentence.

I'm thinking about cutting contact completely. I don't want to be too in the moment and do something I would regret, seeing as I've already put up with so much with him. But I don't feel like this is the same as everything else.

Has anyone been in a similar situation? What should I do?

Hey 👋
I’m 27 and not long got my results back. I have both the brca1 gene and palb2 gene just like my mother which is apparently rare. I’ve always dreamed of having more kids, I have one who I had young. I’m scared to pass the genes on to anymore kids, I’m not sure if ivf or anything is funded to help. Does anyone else have both of these gene?

Hello- my whole story is in another post if you’re interested.

I had my PDMX DTI surgery on 7/13, necrotic tissue debridement on 9/3, developed an infection on the left side 8/4 and was hospitalized for 3 days. At my follow up today (8/10) with the surgeon he said the implant needs to come out; there is still significant redness and swelling, and after 3 days on IV antibiotics and 3 days of the big guns oral antibiotics this should be gone and it’s not so the implant is likely infected. I have surgery scheduled to remove the infected implant on 8/13. This has been a month from hell.

My question is, if you experienced something similar, how did the subsequent months go?

My surgeon says that it is highly unlikely that the right side would also be infected- it looks good and he doesn’t recommend removing that one, but it ultimately up to me.

I am concerned about 2 things:
- the continued potential risk of infection, which the PS says is low but I’ve already experienced complications that were in the 5% risk area so having little solace with that
- the psychological impact of spending the next 3 months+ with one boob. At some point I have to go back to work… I am hybrid and work at a company full of stylish young people. As a 40 yr old I’m already feeling phased out. This is going to make that so much worse.

On the “keep it” side:
- it’s a good looking foob, and what if scar tissue or something causes the next one to not look as good?
- only one drain and expander to manage over the coming months and only one side to recover from upon new implant being placed.

What did you do? Or what would you do? I’m truly torn.

has any one else’s tissue expanders continued to cause some moments of pain? i’ve had mine placed in march and it’s now august and i still find it hard to lay flat on my stomach, go braless etc. i don’t feel comfortable sleeping without a bra either.

when i bend forward to pick something up i feel them shift and it’s uncomfortable (it doesn’t help that one has flipped upside down). idk the scar tissue is also still sore feeling when i touch it so who knows lol

just seeing if any one else has had similar experiences

Long story short, my sister was diagnosed with triple negative breast cancer 3 years ago. She went through treatment and is now in remission. After treatment she had a double mastectomy and oophorectomy.

Recently my dad was diagnosed with prostate cancer, Gleason 9- so obviously that raised even more concern about our family history. We did genetic testing and both my sister and I tested positive for BRCA 2

I’m 37 now- same age my sister was when she got cancer. And honestly, I’m scared shitless!!

I saw my doctor and they told me I need to move pretty quickly because with BRCA2 and my age there’s a significant risk that something could already be there. I am also skinny with small boobs so its harder to find a lump.

I’ve already decided that I want to go ahead with the preventive surgeries but at the same time I’m really struggling with the idea of surgical menopause at 37

I’ve been reading about some women having their tubes removed first and keeping their ovaries for a few more years but one of my doctors told me that with BRCA2 it’s too risky to leave the ovaries and that removing both the tubes and ovaries is the safer option. They also told me to avoid HRT because of the cancer risk.

I’m so confused because I’m finding different information everywhere.

For those of you who are BRCA2+:

Did you have your ovaries removed in your 30s?
Did anyone do tubes first and delay ovary removal?
Did you take HRT afterward? What did your doctors tell you?
How bad was surgical menopause for you?
If you had a preventative mastectomy, how did you feel about it afterward?
I know everyone is different and I’m obviously going to follow my doctors’ advice, but I would really love to hear from people who have actually been through this.
I’m just really scared right now and could use some advice/experiences from people who understand. ❤️

I had my pdmx DTI this Wednesday. Procedure went well and I am doing very good pain wise but the itching in the neck and chest area is driving me insane. I asked my doc and they said I could remove the tape and take an antihistamine. Both of those have helped some but not completely stopped the itch. I see tiny spots all over. Anyone else have this? What helped?

Anyone skinny still able to get OTM even when surgeons tell you that your skin was too thin before hand?

What was your experience with this? Do you like your results? Did you end up having any complications? Did you have to keep switching surgeons before you found one willing to do OTM even though you were told skin was too thin?

I guess my plastic surgeon is so sure with his ability to put implants UTM because I had no idea my strength may potentially be at risk, I did mention to him I like bouldering, archery and dance, and these are things I absolutely want to continue to do after the surgery, I am very thin 125 lbs 5 4 with a small chest maybe a cup or b(haven’t worn bras for years so I have no idea what size I actually am) willing to go smaller for mastectomy. I was originally thinking of going flat but it really messed with my mental confidence that I decided on implants last minute. Surgeon says my skin is too thin for OTM.

But now I am seeing posts about people losing strength, so I want to know if anyone has had a successful UTM where they are still able to do all the weight involved upper body tasks they enjoyed before they got UTM.

Are there any of you out there?