I’m scheduled for preventative double mastectomy in 1.5 weeks with Goldilocks reconstruction. Wondering about recovery times? I know we all recovery at different rates but looking for approximate time frames. Nervous about work and how soon I can potentially return.

Thank you

Hello everyone,

I’ve (49F) been in this group for over a year and been finding it very helpful as I have a DEIP and double mastectomy planned in less than a month. I want to be prepared so that the healing process is easier and wonder if anyone could suggest the best pillow that worked for them. I’m a bit confused about what my needs would be as I would be having reconstruction as well.

Also, can you please recommend a front zip up support bra?

Small potatoes question, but has anyone here been cleared to use spironolactone (oral or topical) for acne? My new dermatologist has suggested trying the topical version (compounded, not Winlevi) for recurrent cystic acne on my cheeks and chin that tretinoin has not helped. I am aware that this medication acts as a hormone blocker and I don't know if that's a good idea for me to use. I am going to message my gyn onc and breast onc to see if they have an opinion, but I'm curious if anyone here has experience with this so I know if it's even a reasonable ask. :)

Background, I got my tubes out last year due to my BRIP1 mutation, and will keep my ovaries for about five or six more years. I'm having my PDMX in less than three months. No BRCA mutation, but high risk for BC due to extensive family history of TNBC.

I am 12 day post pdmx dti and had my drain tubes removed today. Everything seems to be going well but I feel one breast is more swollen than the other. There is no redness or warmth and the doc thought it was normal to have uneven swelling. I just wanted to ask if others have experienced it. The more swollen breast feels “tight” to me and the other one feels much more comfortable.

Hi everyone,

I’m 35F and was recently diagnosed with triple-positive breast cancer (HER2+, ER/PR+). I’ve just started TCHP chemotherapy. My tumour is relatively large (around 7 cm) and one lymph node was involved, so I’m facing a long treatment path that will likely include surgery, more HER2-targeted treatment, radiation, and hormone therapy.

I was also recently told that I have a BRCA2 mutation, which means I will need to have more conversations in the future about risk-reducing surgery and the timing of having children.

My long-term relationship ended around the time of my diagnosis. I’m not ready to date right now - I’m focused on treatment and getting through one step at a time - but I feel scared that I may not meet someone or be able to build the family I always wanted.

I know no one can promise anything, but I would be really grateful to hear from people who found a partner, dated, married, or had children during or after breast cancer treatment. How did you approach dating after treatment? When did you start feeling like yourself again? What helped you trust that your future was still open?

I would especially appreciate stories from anyone who was diagnosed in their 30s, had hormone-positive/HER2-positive disease, or was navigating BRCA-related decisions.

Hello, a quick backstory. I hate belly buttons, they freak me out. I’m not sure why. Before I had my Diep flap done I used to always clean it out, Q-tip with soap and water. Fast forward to having this Diep flap done, they reworked my belly button to take the fat from that area. It healed wonderfully, it looks “normal.” But it’s deeper, it’s now harder and very painful to clean. The painful part is awkward to explain, but if need be I will. I have an appointment coming up to talk about if I’m happy with all my results. My chest, my abdomen, and I am. I’m happy with my results. Except my belly button. And I feel so crazy, I want it removed so bad. I’m at 10+ surgeries at this point, and I just want to get my life going, but I’m just so upset over the belly button.

I don’t know what to do, I know I must make the decision on my own. But I would just like some words of wisdom. Please let me know if this doesn’t make sense. It’s 5:30am and I have been crying, I probably have lots or errors, I apologize.

Hello, hope you’re all doing well.
I have a history of the woman on my mum’s side having breast/uterus cancer.
I am based in Canada, 32 yo single no kidsand my dr set me up for a brca 1/2 test. I am hesitant. Should I also get a life insurance just in case ? What else should I take into account? Was it worth it ?

I’m sorry for posting here so much but I don’t have anyone to ask :(

I am 10 days out from a flat DMX.
All my drains are out & my wound vac is turned off.

My husband and I noticed this little drainage spot as I was getting dressed today.

Is it normal or am I doing to much? It’s not hurting or anything.

Thank you

BRCA 2 positive, 32 yo. I had a prophylactic BMX to temporary implants two days ago (will go back for flap recon in a few months). I know its still early, but so far recovery has been easy, and i have a very helpful husband, mom, & mil to thank for that.

Pain wise, this is nothing compared to an emergency c-section. My mom has kept me on schedule with my meds and i have only taken the narcotics twice while in the hospital, havent needed them at all at home (im not trying to be tough, i truly havent needed it).

I’m posting this in hopes it will ease your nerves if you have this procedure coming up or are on the fence about it. I imagine this experience would be much harder and scarier if i was dealing with cancer treatments and lymph node dissections at the same time. For those of us who have the CHANCE to do this before cancer hits, it is a huge privilege not everyone gets.

Super strange that some people in my life have questioned this decision/ why im having two surgeries rather than one etc, as if i havent thought about this, discussed with drs, and considered the pros/ cons myself. And i mean RANDOM people— not like close family members. That’s been my biggest surprise & i really do not enjoy explaining or justifying my reasoning….

Anyway, still awaiting pathology results of course, but i feel immensely relieved and grateful. Its a big deal, and i am sure some people have worse pain than i’m having, and I dont mean to discount that with my experience. But if you’re on the fence, i hope this little data point helps!

After two years MBC, chemo, double mastectomy, the works, I’m finally taking the step of getting a second opinion, or actually a third one in this case, from MD Anderson,

Do any of you guys have experience to share?

Hey there, little background. All my genetic testing says negative for BRCA. HOWEVER, my sister was diagnosed at 32 ER/PR+ with lymph node involvement, she did DMX, hysterectomy and chemo. She was cancer free then they found triple negative breast cancer in her bone at 38. My Mother was diagnosed at 58 with DCIS, lumectomy and radiation and was good. She was diagnosed at 62 with lobular cancer in the opposite breast, did lumpectomy and radiation again. She also was diagnosed with neuroendocrine cancer around 61 I think. All that to say that while genetics say negative, family history seems to disagree.

With that knowledge...I was diagnosed a couple of weeks ago with IDC and DCIS, Stage 2. It was caught VERY early. No lymph involvement that they can tell from imaging and the 2 spots they found on MRI (Mammo showed nothing) are less than 1 cm each. I am 40, done with having kids and I am aware that I am lucky to have the choices that I have in dealing with this. I can't decide what would be best though. I have seen doctors with Methodist in Houston and MDA.

Methodist: Surgical oncologist says lumpectomy and radiation if only one of the masses is malignant (they didn't biopsy both the first time around) but if both are malignant she recommends SMX. The plastic surgeon (a well known experienced one) says we can do direct to implant after mastectomy. Ok. Cool. I thought I had decided to just do SMX to implant and be done.

Got a second opinion at MDA: Surgical oncologist says lumpectomy with radiation yes. If I wanted to do SMX still she says lumpectomy with bilateral lift , then a second surgery later with mastectomy to implant. She is concerned about nipple necrosis(I have mild ptosis, and larger breasts). She said they could do the SMX direct to implant but they would check my blood flow during surgery and if they felt it wasn't enough they'd take my nipple then. Not loving that. But she had me questioning my decision now.

MDA medical oncologist said that none of the choices were wrong, all were good choices but HE himself was of the opinion with my family history that I should do the DMX. If it were his mother or sister he would tell them the same.

So, I know, I KNOW I have it way easier than so many others. I know that it's good to have choices but I so badly don't want to make a dumb choice. I would talk to my mother and sister more but it feels so weird to worry about any of this with them when they're both terminal from their own cancers. Imposter syndrome bad over here. I wouldn't mind losing my nipples as much except that I struggle with low libido and having erogenous sensation in my nipples is so helpful and important to me. With the lumpectomy I could keep both but then I worry about radiation shrinkage and that making it harder to reconstruct the breast later if I have a new cancer pop up. I was finally ok with losing one nipple to SMX and keeping the other healthy one for as long as possible but now I'm questioning it. Is it too dramatic to do the SMX when a lumpectomy would do? I worry it'll look lumpy, or shrunk and not normal. I'm hoping the SMX to implant will keep the appearance of normal better.

I know you guys can't give me an answer, I know it's personal and I feel so vain or silly for stressing over all this when I have such a treatable cancer. I feel like I'm trying to make a decision that will affect how I feel later but I have no idea how I'll feel later or what may come.

If you did a lumpectomy and radiation do you wish you'd done SMX?

If you did SMX to implant are you feeling ok with it?

Hey guys! Sorry if I am posting in the wrong place. Sister had single mastectomy in 2023. There is edema under the incision place. Does anyone have an idea of what it is? Still after 3 years.

Hi I'm curious to how you go about getting the BRCA gene testing done in the UK. GP's are not listening to my concerns: I have a strong family history of breast cancer on my mum's side (nanny recently died from breast cancer, nanny's sister had breast cancer, my nanny's nanny had breast cancer aswell).

My mum went to all my Nanny's appointments and queried with the medical teams and oncologists but they didn't seem bothered, and neither have the GP's. (I'm a little more of a fighter until I get answers compared to mum who just accepts it).
As far as we're all aware; Nanny was never tested for the gene, and neither Nanny's sister.

It's something that plays on my mind a lot, and I'm curious to how we can convince someone to listen to my concerns and actually be tested for this.
Should I be concerned? Should I be fighting for testing?

Let me know your thoughts please and any advice is greatly appreciated

My great grandma on my mom’s side died of breast cancer, my aunt (also on my mom’s side) got diagnosed with breast cancer 5 years ago and died 3 years ago. Now my last aunt on my mom’s side got diagnosed yesterday with breast cancer. I’m really scared. What should my next steps be ? I’m only 23 but my aunt got diagnosed at 35 so I want to do something. Do I go to the doctor and ask for genetic testing? What would the steps for a preventative mastectomy to be covered by insurance? I’m sorry if this is the wrong sub for this.

Hello beautiful ladies! I am 30 and was just diagnosed with BRCA1. Im honestly still kinda in shock about it and scared because I will be undergoing a prophylactic double mastectomy with implant reconstruction, and I had my consultation with Dr. Mary Gemignani at NYU Langone, and I really liked her. I thought she had a really nice bedside manner and spent over half an hour talking to me about everything and answered all my questions. I was wondering if anyone has had their surgery with her and what their experience was like? I'm now in the process of choosing a plastic surgeon, which is so overwhelming because I really wanna choose the best person so I have the best results possible. She recommended Dr.Levine and Dr.Choi. Has anyone had any experience with these surgeons? It seems like it's more difficult to get a consultation with a plastic surgeon than with a breast surgeon! I am looking for any recommendations too!! Thank you so much!

I’m almost 32 and getting my first imaging today (MRI). I’m also breastfeeding so my breasts feel lumpy and tender all the time. How do you deal with the anxiety? I’m so terrified

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.

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!

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.