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What’s recovery look like for double mastectomy?

I was just diagnosed and considering double mastectomy. I have my surgery scheduled for this month. Can someone tell me what the recovery looks like and what to expect? Pain, timeframe to be up and about?

Comments

  • flowergirl1975
    flowergirl1975 Member Posts: 54
    edited August 2023

    hi @random_wmercado8507 I had a double mastectomy, no reconstruction on 5/31. This was my experience .It was emotionally hard the day of my surgery. I spent one night in the hospital. They gave me a nerve block after surgery which was awesome, probably helped with the pain for days after surgery. I had two drains one on each side. These did not hurt but were more annoying than anything. They came out about a week after surgery. For awhile it’s hard to lift your arms above your head, and you’re not supposed to lift anything heavy. I took 5 days off of work, then worked from home for 4 days. I have an office job so going back to work was not an issue for me. After surgery went to physical therapist and thankfully my range of motion was about where it was at pre surgery so I don’t have to do any PT. The feeling in my chest is slowly coming back but much of it still has no feeling. I choose to have reconstruction at a later date so depending on what you decided to do recovery may be different. Let me know if you have any further questions, more than happy to answer them for you. Best wishes to you!

  • moderators
    moderators Posts: 7,884

    Welcome, @random_wmercado8507! We're sorry you find yourself here, but we hope this community can be a source of support for you.

    When you get a chance, check out the Surgery: Before, During, and After forum. Lots and lots of helpful info, advice, resources, and guidance there.

    The Mods

  • random_wmercado8507
    random_wmercado8507 Member Posts: 11

    thank you, this was helpful. Seems it’s not as painful as I’m expecting.

  • maggiehopley
    maggiehopley Member Posts: 102

    I am coming up on the one year anniversary of my double mastectomy without reconstruction. My surgery was outpatient; I checked in at 7 am and was home around 3 pm. I had four drains, two on each side, and they sent me home with them clipped to a lanyard. I decided that worked for me and kept it that way. My husband helped me empty them twice a day, but I did it myself on several occasions. Two came out in one week, the other two after two weeks.

    I slept on the couch because it propped me up comfortably. I did not use the painkillers that were prescribed; Tylenol was enough. I did the exercises they gave me for range of motion and still do them, as my shoulders (particularly on the cancer side) get stiff from time to time. It took several months for feeling to start coming back, and I still have some numbness on the back of my arm on the side I had a sentinal node biopsy. I miss having boobs, but I have decided to stay flat.

    I could dress, shower, etc. by myself immediately. It was about a week before I was cooking. I could do laundry but needed my husband to carry the laundry basket downstairs. I didn't drive until the drains came out.

  • momgoose
    momgoose Member Posts: 71

    First of all, I am sorry you are finding yourself having to have a double mastectomy. It's a big emotional decision, even if you don't think you're very emotional about it beforehand.

    Second, I think that your pain level may well depend on whether or not you have immediate reconstruction with tissue expanders. If you "just" have the double mastectomy, I suspect that the pain level is more manageable. I opted for immediate reconstruction with expanders and despite a high pain tolerance, I struggled. The expanders were horribly uncomfortable to me. I was pretty uncomfortable and not really able to sleep much at all for about 3 weeks. Any sleep I did get was in the recliner. Unfortunately, I had problems with my initial mastectomy incisions not having sufficient blood supply and so the wounds were unable to heal properly, which resulted in me having to have my expanders removed at the 4 week post-op mark. Then I had to wait 6 months before trying again.

    I am now 3 weeks post-bilateral tissue expander reimplantation and the experience has been much easier. Everything is healing well and I've even had two fills. Knowing what I know now, I would opt to wait and do delayed reconstruction because it is much easier on your body, but I also know how hard it is to be flat and use prosthetics for months when that is not what you want. I wish I had known how high the infection/complication/failure rate of immediate reconstruction with tissue expanders was (>30%) but hindsight is 20/20.

    I don't say any of this to scare you. I was in your shoes in January of this year and I remember exactly how it felt. I just want to be real. You will find that you can handle more than you realize and that you are much stronger than you think. The recovery period is going to be so different for everyone depending on age, reconstruction and general physical condition. I would say 4-6 weeks is a pretty good general time frame for starting to get back to normal a bit. You will still have some lifting restrictions until about 6 weeks, but I know even when I was in a fair amount of discomfort, I went back to my work-from-home desk job at 3 weeks post-op and survived. I would definitely not plan to go back to work before about 3 weeks because you will likely have those drains for at least 2 weeks and while not horribly painful, they are just so annoyingly in the way and impossible to hide.

    Hopefully this helps give a little insight into what recovery can be like. I know a read a lot of "it's not too bad" and "I felt great after 2 weeks" and so I went into surgery a bit over-optimistic. I wish you all the best in your surgery and recovery! :)