• I'm having a bilateral mastectomy with reconstruction (expanders) in just over 3 weeks. What can I expect after surgery?

    Asked by Julie99 on Tuesday, December 18, 2012

    I'm having a bilateral mastectomy with reconstruction (expanders) in just over 3 weeks. What can I expect after surgery?

    Is there anything that the doctors don't share that I should know or expect? Ways to prep at home, things to bring with me to the hospital, or tips you could share? I have had no treatment at this point and chemo starts 4-6 weeks after surgery.

    17 Answers from the Community

    17 answers
    • Nancebeth's Avatar

      It is quite overwhelming. I was in the hospital for 2 nights and I brought my kindle but was on pretty heavy painkillers most of the time so I didn't read. I made sure I had help at home for ther weeks following my surgery. I didn;t have expanders, as I was able to get my implants immediately after the mastectomy. I was not able to lift my arms higher than shoulder height so I needed someone to reach things on shelves and wash my hair for me. I was not allowed to lift anything over 5 pounds so I had someone to go to the grocery store with me and help with household chores. After the first two weeks although my activities were still pretty limited I felt a lot better. I was off work for 9 weeks. The pain was manageable after the first few days but my chest was really really sore.
      I have a blog about my whole experience at nancebeth.blogspot.com. It includes pictures from after surgery up until a few days ago when I got my prosthetic nipples.
      Hope that helped some.

      almost 4 years ago
    • gwendolyn's Avatar

      I assume (hope) someone told you about the surgical drains you will have in...? Make sure a nurse shows you how to empty them properly. Practice doing so yourself before you leave the hospital. It's not difficult to do, but it was a new, weird thing I'd never dealt with before. I was glad to be comfortable with emptying them before I got home and had to do it myself.

      Expanders are uncomfortable but you can anticipate them getting slightly more comfortable after a couple of expansions because it rounds out the edges. I found this to be true anyway.

      Bring only button-down or zip-up tops to the hospital and plan on wearing this style for a while. You won't be able to pull anything over your head for a while (couple weeks anyway, maybe longer.)

      almost 4 years ago
    • karen1956's Avatar

      I too had bilat with expanders....PS gave me permission to stay 2 nights in the hospital and I was okay going home then.....pain was not too bad.....don't remember all the details, but I felt pretty good 2 1/2 weeks post surgery...I only had 2 drains which luckily I got out one week post surgery. I had to sleep on my back so propped myself with a couple pillows.....(had always been a stomach or side sleeper)...get button down (or zip tops) instead of pullover tops for the few couple weeks post surgery as you won't be raising your hands above your head.....Keep things on night stand within close reach......My DH helped wash my hair in the sink (it was long at the time), but the real treat was going to fantastic sams and having them wash my hair. No driving for a week...no lifting more than 8#.....BS said 2 to 3 weeks off work....I was going to go back after 2 1/2 weeks, but I was scheduled for chemo a couple days later and BS said just take the extra days....I work in the schools and it was near my spring break so I was off a month. I had my first chemo 3 weeks (to the day) post surgery......I was feeling pretty good after 2 1/2 weeks going out to lunch with my girlfriends before I started chemo....you will have a surgical bra after surgery.....I didn't wear one during fills (of the expanders)....chest was tight after each fill but it went away in a day or two....I had my fills while going through chemo...as I wanted to stay small, I only had 3 fills.....All the best to you

      almost 4 years ago
    • SusanK's Avatar

      All the answers posted here are excellent. I can only add a couple thoughts. One, showering. I couldn't take a bath because I couldn't lift, pull or push myself up from a sitting position. We don't have a hand-held showerhead but my husband bought an inexpensive one and that helped immensely. I couldn't raise my hands over my head to adjust a regular showerhead or even to wash my own hair for a few weeks. It is amazing how you will improvise! Also, sleeping in a recliner. I hate my husband's ugly recliner...but it was my home base for nearly a month. I could almost propel myself up and out of the thing when I needed to leave it, and it was comfortable to sleep there until I was able to twist or turn without pain in a regular bed. It is a major surgery, even though I went home in twenty-four hours, and somebody to be with you around the clock for a few days is recommended.

      almost 4 years ago
    • jenniferk's Avatar

      I also had bilateral mastectomy with immediate reconstruction. The pain was very mild. I only needed tylenol. The expanders are uncomfortable. They are hard. It felt like I had to bricks on my chest. Make sure your plastic surgeon doesn't get carried away with filling them. I actually had nice sized breasts right after surgery and then the problems started. The expanders started getting wrinkles and they had to keep making them larger and larger to fix the wrinkles. I had 4 drainage tubes that were in for weeks. 2 of them were removed after 3 weeks and the other 2 were removed after about 6 weeks. The easiest way I found to deal with the drains was to wear scrubs like nurses wear. You either have to attach the drains to some type of belt to hold them or have clothes that have pockets. I got 2 sets of scrubs that could mix and match. The tops had 2 really large pockets in the front and also buttoned down the front so I could get them on and off easily. The pants had numerous pockets. The pants had cargo type pockets. The ones that were on the thighes were great for 2 drain bags and I used the shirt pockets for 2 drain bags. As for showering I hooked a cheap belt around my waist with the bags attached and showered pretty normally. I wore my scrubs in the hospital for pajamas and also had a robe with pockets that I could also use for the drain bags. My plastic surgeon was from major cancer center in Houston. After all the fills for the wrinkles my breasts were so large and heavy that they were actually sagging down close to my waist. Plastic surgeon would actually call me Dolly Parton when I would go in for check ups. I ended up changing plastic surgeons when I awoke one morning and right breast was way bigger than the left. 1st plastic surgeons office would not return my calls and then after calling for 3 days I was told the doctor didn't have time to see me before he left to go on vacation. I started running a fever while looking for another plastic surgeon. I found a great doctor. I had to have expanders removed because my body was rejecting them and they were infected. It ended up being a blessing having them removed. I felt better than I had since mastectomy once they came out. As of now I am just flat and that is working out fine. I wish I would have had more information before doing the reconstruction. I have always been in tune with my body and the expanders just didn't seem to be part of me. After the mastectomy it looked like I had breast but my chest had no feeling do to the nerves being damaged and removed during surgery. Even though I looked like a woman I didnt have any sensation in the new breasts. I am actually enjoying the fact that I dont have to wear uncomfortable bras anymore. Before mastectomy I was a 38 d. I am enjoying wearing tops that I was never able to wear before. I know lots of people that love their reconstruction. I just wasnt one of them. I hope this doesnt seem negative and I'm not against reconstuction it just didnt work out for me. Be sure and ask lots of questions. I was scared. I had previously had hysterectomy, knee surgery, and pins in big toe. The bilateral mastectomy was by far the least painful surgery. If you think of anymore questions just ask. Good luck.

      almost 4 years ago
    • Lindy's Avatar

      #1: Be absolutely sure you receive thorough information on the proper technique for managing your drains to avoid infection. #2: Get appropriate information (including graphics) of what to watch for should infection occur. #3: Be certain the surgeon is cognizant of and pro-active in providing you with instructions on the use of your arms through the long healing process to avoid/lessen the possibility of lymphedema. The best care is not necessarily the standard of care so you need to know what that means to be sure that is what you get. I envy where you live, had a second opinion at Tuft's, TLC staff, smart people.

      almost 4 years ago
    • jenniferk's Avatar

      I forgot to mention sleeping. I slept in a recliner. It was much more comfortable than a bed. I had a table next to the recliner so I could keep snacks and drinks close by. I was also very worried about chemo and hairloss. I was dreading losing my long hair more than anything. It wasnt bad at all. I found that my most comfortable wigs were out of the TLC catalog. I think the website is tlcdirect.org. They are very reasonable on their prices and the wigs actually come in sizes instead of one size fits all like in the wig stores. I know the whole thing is scary. You can do this. It was not near as bad as I was expecting. Make sure you get lots of rest. They will give you nausea medication once you start your chemo. If it doesnt seem to be helping tell them. My oncologist made sure that I new if i felt the least bit nauseated to let them know and they would make adjustments on my nausea medication. They also said lots of little snacks so my stomach wouldnt be empty.

      almost 4 years ago
    • Blepta's Avatar

      I had bilateral mastectomy and expander placement in 2007. In addition to the excellent comments others have already posted, I remember having a difficult time doing anything that activated my pectoral muscles in the least, like sitting up. It was very helpful to cross my arms in front of my chest (hands near opposite shoulders) as that forced the chest muscles to stay relaxed. My expanders were almost completely flat at first. I was surprised that the most pain I had was in my back just between my shoulder blades. I think it was because they moved the muscles that attach at that point to place the expanders and so they were very sore. I had my husband bring a heating pad from home to help soothe them. I wish you all the best in you cancer journey.

      almost 4 years ago
    • MsScribe's Avatar

      First of all - It'll all work out fine - really. You'll do great! I was 50 and it wasn't so bad.

      Secondly - I was able to leave after 23 hours on Motrin - every bodies pain levels are different. I got a dose of Dilaudid after surgery but once I was awake and had some coffee I was good! I had some problems getting my bladder to work after the anesthesia and had to get a catheter for 5 hours...no biggy.

      I recommend some stool softeners before and after surgery - as its no fun trying to wipe after a double mastectomy or straining to go with those expanders freshly in LOL

      You will definitely need help with washing, brushing hair, drying yourself and fixing food. I recommend baths not showers which was easier with drains in. Life gets a lot more normal once those are out.

      They will place you in a very horrible and uncomfortable hospital bra thing after surgery - mine didn't fit and even with padding it was very comfortable, I decided to wear a sports bra as soon as my drains were out. Instead of the ridiculous abdominal pads they use for wound padding - I suggest buying some nursing pads and using them. They are less bulky, just as absorbent and won't make you look like the abominable snowman!

      The tighter the bar and padding , the less you move around, the more likely you'll avoid extensive scaring. Don't do what i did and go back to the gym after 6 weeks using the elliptical a bit...i have the keloid scars to prove it. (Glad I did though, as I recovered very quickly.)

      The expanders can be very uncomfortable. If I had taken pain meds I would have been a bit more comfortable, but I worked so I needed a clear head.

      You can not drive or grocery shop, and walking may be painful for a week or too as any movement with drains and fresh surgical scars will be felt. So plan on taking it easy and resting if you can. use the motorized cart at the grocery and have someone drive you. It's a bit hard on the ego but it beats walking.

      Your new boobs will be higher then your old ones as they have to be under the muscle. So realize clothes will fit differently. low necklines won't work too well for a while, but the scars do fade. I couldn't stand tight nylon or spandex clothing after surgery and still prefer soft cotton T shirts. Nothing is going to look good over that surgical bra and drains!

      Just embrace your new you and be grateful you never have to wake up wondering if they have a cancer lump in them.


      almost 4 years ago
    • MaryMoo's Avatar

      I had single mastectomy with expander. I would agree with all the advice given so far and especially would echo the advice to never be afraid to ask questions. If something doesn't feel right, speak up. Most of my expansion went well, but during one session, I guess I was already a little tense because when the nurse started to add the saline, I got an intense pain and made her stop. I had her remove what she put in and I got immediate relief. Apparently, I had a muscle spasm in my chest, so we just gave it a rest for a week or so and never had any more problems after that. Getting expanded was uncomfortable for anywhere from a few hours up to 24 hours after each expansion but no worse than having a bad headache. Yoga helped me relax and loosen up my chest after a session. I had chemo as well during expansion and I think the chemo probably took my mind off the expander. Right after the mastectomy, I clutched a pillow to my chest non-stop for about 3 weeks and that baby will become your best friend for a while - felt like a little kid who couldn't leave the house without it. On the drains, everybody is different, so be patient and appreciate that the drain is your friend! My doctor had me keep track of the fluid volumes and frequencies (and being an engineer, I of course, drew a graph!) It was good to see that I was making progress with a little bit less fluid every day and a little bit more clear every day. When I showed him my graph, he said he had seen it all and that only an engineer would do that. The one pleasant thing I did not expect is that after the surgery, you will not be flat! They usually put some saline in the expander right away, so I had the size breasts I did when I first started to wear a bra as a very young teenager. I was expecting to see this flat ugly chest in the mirror but instead I was staring at myself as a 13 year old. Although I have/had a small chest (B cup on a good day), it was nice to still have some shape. Good luck and you will do great.

      almost 4 years ago
    • smlisboa's Avatar

      I had that done as well. Make sure to do your exercises. It will help with your recovery. Make sure to wear comfortable bras....so not to have too much movement while recovering. It was real uncomfortable for me because I sleep better on my side.....I couldn't do that. I kept my expanders in until after my chemo then I just had the silicones put in...so much better. Good luck to you.

      almost 4 years ago
    • Nomadicme's Avatar

      I just turned 41 when I had my dx Mx and reconstruction (3/11). Since we're around the same age I hope your experiences matches mine, which wasn't too bad.

      Someone mentioned taking a stool softener before and after, I couldn't agree more! I was extremely constipated after that first surgery, I was praying for poop daily. It was my worst side effect.

      Before the cancer Dx I was physically active, would lift some weights, hike, so maybe that had something to do with my relatively easy recuperation. Anyway, I was discharged after one day. The Drs came to see me in the morning, I was up reading the paper. Mind you, I didn't sleep all night, I was high as a kite for a while from the drugs (and I have to say loved
      every minute of it). I insisted the catheter (for peeing) be taken out ASAP so I could walk a little around the room.

      To help with the drains you need to immobilize them somewhat, as you don't want them pulling. BC volunteers at my hospital gave me two things: (1) a belt to hook the drains around, so that they're not in the way or pool (any cotton belt will do, the drain balls have a doohickey you can use to run through a belt, and (2). A pair of panties with pockets for the drains for bathing (don't want the belt getting wet). I'd say just take a pair of large panties and shove the balls inside for bathing (if you don't have access to the one I describe, Don't think VS has come up with a mastectomy line...hehe).

      I'm very independent so it was tough to rely on others, but at first you just have to. Make sure you know how to drain and that the person that drains you is not squimish. I relied on my mom to bathe me for a week. After that I just drew a bath and did the best I could. I found I regained mobility daily. Two weeks post op my mom had to leave, but I was totally fine taking care of myself. Wen grocery shopping I'd either have someone help me carry stuff, or only buy light stuff (was told I could carry a gallon of milk a month after the op).

      Pain - hate it and only felt it when I woke up from surgery, and was very vocal about it. It hurt a lot on one side for some reason. Took them a while to get my pain to stop but after that it was smooth sailing. I was on pain meds for 10 days after the op, that was it.

      Complications - I had some skin that almost went necrotic (according to my plastic surgeon, this was caused by the mastectomy surgeon being too aggressive). I'm not a smoker, was relatively young, so this reversed (if they have to resect necrotic skin, the cosmetic outcome is compromised). In the one breast I asked for nipple sparing surgery (the breast that supposedly had no cancer), but again my mastectomy surgeons aggressiveness resulted in the nipple dying).
      I had the one drain for 4 weeks, which is 1 week longer than average (supposedly). The drains in my right side had an fair over 6 weeks, I begged to get it removed and was fine with them tapping the fluid in my back for the week or so the fluid was still building op. I never had an infection. It's important to make sure you know how to take care of the drains, It's simple, it of not done right it can lead to complications I'm sure you don't want.

      I walked, slowly, for half an hour a day, to get the blood flowing.

      Here's a funny, when under the drugs at home, I was happy and filled with optimism. There was an online sale for this jeans I like, and I got a size 4 lol. I was a size 10, but thought oh after I recuperate I'll lose this weight in no time. Well, after the drug induced euphoria was gone I returned the jeans. So beware of drug induced shopping lol.

      almost 4 years ago
    • Nomadicme's Avatar

      A couple of other things, I think it took 6 months to regain full mobility of my arms. There are stretching exercises they tell you about.

      I had the latissimus dorsi reconstruction, and my upper back was week for a bit, as in I needed higher backed chairs to lean on. I think 2 months post op my back was ok.

      The expansions were not an issue and did not hurt as the skin takes a while to grow all the nerve connections that were severed during surgery. I took 2x as long to do my expansions as I couldn't do the 2nd reconstruction until after the chemo was done. But I did learn that I should have done them sooner as I was responsible for co pays after 3 months post mastectomy, and I could have gotten all that in without paying.

      Outcome, the girls look ok, I still have big scars. The one thing I don't like are these indentations on my back for where the muscle was moved around, Hate them.

      almost 4 years ago
    • MarnieC's Avatar

      I've got an article about this type of reconstruction on my website - here is a link:
      Might give you a little more insight. Lots of good answers here too! Hope that helps.

      almost 4 years ago
    • Julie99's Avatar

      THANK YOU SO MUCH to everyone who responded here. Your suggestions really big difference! Surgery was 10 days ago. One thing I didn't expect was how tired I would be. Yesterday was my first day out and I was falling asleep on the ride home.
      The pain is worse first thing in the morning, after being in the same position on the recliner all night. After I'm up for a bit, I'm fine. Pain meds are on the table I set up, so I take one now before trying to get up. But that was at 7:15am today (now 5:45pm and no drugs since).
      I was very surprised at how okay I felt, other than the morning.
      The water bottle with a straw was HUGE, especially at the hospital. Drank two 32 ounce bottles of Powerade Zero within the first 18 hours after surgery. Having the handle on my bottle and straw were wonderful!
      I bought the flushible wipes too, which REALLY helped when the stool softeners started working.
      2 things I was lucky with and both came from Dana Farber.
      One was a small pillow a local hs home ec (or whatever it is called now) makes to donate. It is about a foot long and round with about a 4" diameter. They gave me 2, one for home and one for the car with the seatbelt. LOVE it. I use it under the arm they took all of my lymph nodes from.
      The other is called a Jacki Jacket which is donated to local area hospitals to hold drains. (here's a link for a picture). http://www.alittleeasierrecovery.org/ Four days after surgery, I already washed the shirt twice.
      We went to Walmart to buy men's button down flannel shirts, a yard of plain white fabric and the iron on heat and hold hem sealer. I made 4 more of my own version of the shirts to hold the drains. SO much more comfortable than the velcro belt I bought on TLC.
      I've had visiting nurses daily since being released from the hospital after 2 nights. We do the drains at home once and the nurse does it once as well, along with changing the dressings.
      Once the drains come out on Friday (my next apt with my plastic surgeon), I plan on buying front closure sports bras. Do NOT like these tight and comfortable surgical bras.
      My plastic surgeon is excellent but very conservative. She requires 2 consecutive days of under 20ml for a drain to be removed. But she does AMAZING work. I have had no bruising at all, other than stitches, my nurse said it best with "they look like regular boobs! Your boobs look fabulous!"
      SO... thank you to everyone who contributed to helping me prepare better for this. It made SUCH a big difference and had me ready when the big day arrived!!

      almost 4 years ago
    • DaveWaz's Avatar


      I hope your procedure went well and you are now on the mend. Perhaps it might help to read other's experiences with the mastectomy and reconstruction.



      about 3 years ago
    • DaveWaz's Avatar

      Thank you for sharing your questions. I hope all is well.

      This question reminded me of some content we have on reconstruction experiences.




      It also reminded me to let beginner's on WhatNext know about our Beginner's Guide to Cancer, including a guide on how women chose between a lumpectomy and mastectomy.


      Best of luck,

      about 3 years ago

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