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Recovery from double mastectomy

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tedbrogan5190
tedbrogan5190 Member Posts: 12

Question for those who have had a double mastectomy... how long did it take you to fully recover?

My mother is 2 weeks out since her procedure... performed on the second, released on the 5th.

She has had most of her drains removed. One remains. She does still have some tightness around the stitches and some trouble sleeping at night. She is able to walk around the house and do some very light chores.

When should we expect a return to normal capacity

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  • LivinLife
    LivinLife Member Posts: 301
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    Best to your mother! I was independent, except for reaching and anything over 5 pounds within the first week for sure. I was told no lifting over 5 pounds or reaching above my shoulders for 6 weeks. That limited me except I took care to use bottled vs. gallon jugs of water, etc. and to put all upper shelf things I would need on counters, etc. prior to my surgery. I was driving just after a week though should not have driven for about the first 2 - long story battling the surgeon's P.A. over drain removal and my car being stuck 4 hours in that city from where I live.... One is not supposed to drive until drains are removed for sure. Range of motion will likely still be an issue for a time - that varies for folks. Home stretching and even P.T. can be very helpful though you may need to ask about that.

    I am still sleeping about 10 hours per night which is obviously NOT related to the surgery at this point. Prior to surgery I was up by 4:45-5:00 a.m. and only sleeping about 7 hours per night for years! I have a lot of other medical issues and think as I regained energy from surgery, which began within 3-4 weeks then something else swooped in related to other medical issues. I was back to regular light exercise with hand held weights and doing my own housework within weeks of surgery though at a much lighter level. I let more go those first 2 months at least though took care of basics a little at a time.

    Your mom still has a drain in so she is definitely limited for activities until that is out and the wound heals. Her sleep may be a bit uncomfortable the first 2 to 3 days after that is removed too (or not....). Two weeks is really early for life as it was.....

  • hnsquared
    hnsquared Member Posts: 47
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    tedbrogan....so sorry you mother is dealing with this. I think there is a big range in how quick people recover. Livin life looks like she felt well quickly. I was 49 and healthy at diagnosis but I had 16 chemo infusions before surgery. I also had reconstruction with implants at the time of mastectomy. Surgery was harder for me than I expected. I didn’t have any complications and all 4 of my drains were out at 2 or 2.5 weeks but my plastic gave me very strict instructions no arms raised above my elbows for 5 or 6 weeks. I wasn’t in pain but I couldn’t do much. Once my drains were out my husband went to work and would just put food, plates, etc at a level I could reach without raising my arms. They said I could drive once I was comfortable I could make a quick maneuver if there was an issue. I didn’t drive for 4 weeks. Once I got cleared by my plastic at 5.5 weeks I started PT to work on range of motion. I felt like I turned a corner at 5 weeks and with the help of PT got range of motion and strength back quick.

    In addition to the stress of surgery there is also the emotional part...it’s an amputation of a body part and that hits everyone different. I hope she continues to recover well

  • DiveCat
    DiveCat Member Posts: 290
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    Everyone is different. I received a prophylactic bilateral mastectomy so unlike many on here I was not going in with a body already dealing with cancer, chemo, radiation. I was essentially as healthy as I could possibly be and young (34). I had immediate reconstruction to implants, sub pec with Alloderm. Two drains. Sent home same day. We are 2 1/2 hours from the hospital I had my surgery so it felt like a long drive home!

    That was my first time with general anesthesia and when we found out I deal with post operative nausea and also take a really long time to get out of it. I am also certain it meant - combined with just overall trauma to body from surgery - I was low key fatigued for quite a few weeks after. Still, i I was able to start doing some slow walks within a day or two around my block but of course all the other restrictions applied like T-Rex arms and no lifting over 10lbs until cleared. I stopped RX meds after couple days as hated them and switched to OTC. My drains came out about a week in which was a huge relief as they are so uncomfortable - I just remember the drain sites always feeling like they were pulling or stinging - I also had one pull open a bit and bleed as a clot blocked the tubing where it was still in my body so blood was coming out of drain site rather than through tubing so and to go to ER to fix. Other than needing help with “above arm things” like washing my hair or reaching things I was making my own food, walking down to coffee shop and back for some coffee, puttering about house going stir crazy within 1-2 weeks. I was able to drive once my drains were out and I was off meds but I did not go far as I was concerned about quick movements in case needed, I really didn’t feel *comfortable* driving until about 3ish weeks.

    Honestly by about 3-4 weeks I felt fine for most things and had to remind myself to be careful - my body was still healing obviously and would sometimes remind me if I forgot. My chest still felt a bit tight and that took a few more months. And random nerve pains, or discomfort at incision sites continued for a lot longer. Those “zappers” continued even at times after a year. They mostly went away but then have come back after any further surgery.. I was back at gym for lower body activity, back at office, etc all around that 4 week period (cleared by my doctor of course).

    Incision and stitch areas can feel uncomfortable for a lot longer than expected. There is a lot of healing going on and stitches can be so irritating. I have a few stitch sites right now from my surgery on March 4 (getting them out today, yay!) and a couple of them fluctuate between being highly itchy and slightly pinchy. I know from experience I might feel some itchiness or tinges at those sites for longer.

    The return to “normal” is different for everyone though two weeks after any significant surgery/general anesthesia is early for anyone. Normal is be different for each person (one persons normal may be being able to knit, another persons normal may be running marathons) and our bodies are all different. I myself never returned to sleeping on my stomach and became a permanent back sleeper, so if I was judging return to normal as everything the same as before I guess I would say I never did, ha.


    Best to your mom :

  • muska
    muska Member Posts: 224
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    Ted, did your mother have a reconstruction procedure done as part of her surgery? If yes her recovery is likely to take longer.


  • Maryjogee
    Maryjogee Member Posts: 12
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    thank you for your post. I am almost twice your age but also fairly prophylactic (HLA 2x/hxxxx) and I appreciate your experience.

  • Maryjogee
    Maryjogee Member Posts: 12
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    help. I am embarrassed to even ask this, given the Stage 4 and Chemo gals out there. Please forgive me. Still, I would like to hear from gals that have had reconstruction that have some experience with additional aesthetics done at mastectomy sx or exchange sx. Trying to make lemonade. Thanks to all.

  • OnTarget
    OnTarget Member Posts: 124
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    Ted,

    I was 42, and it took me 4 weeks to feel mostly normal and 6 weeks to feel 100%.

    I was able to do a lot of things at 3 weeks, but I just wasn't back to normal.

    I think I started full exercise and weight lifting at 6 weeks.


    Maryjogee, you'll get better responses if you create a new post.

  • rah2464
    rah2464 Member Posts: 1,192
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    Maryjogee - I hope you do pursue anything that makes you feel better about this process. I went up a bit in size myself from my A+ (my PS termed me that) to a full B+. I figured if I had to go down this path, I would at least see what it was like to have something up there. My very best to you on your upcoming surgery.

  • WellWater
    WellWater Member Posts: 4,524
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    I hope I"m in the right forum!

    I am a returnee....in 2008 I had a lumpectomy, rads and chemo in the right breast. Took Tamox and Aromasin for one year and quite. Coulding deal with the wide effects. Since then I have had lymph and lung cancer. I am in remission for 4 years. However, recently up popped cancer in the left breast. Small and caught early. I am having an MRI on 3/23 and then sit down with the surgeon.

    I have made the decision to have a double mast, no reconstruction. At my age 73, I am looking for answers on recovery for my age bracket.

    I am active...go to the gym and swim. I exercised all during my previous cancer txs and I know that helped. This surgery looks like it will keep me down for how many weeks? What about pain and limitations? I shun drugs whenever I can but I am sure I'll need to take pain pills for a few days anyway. How long was the hospital stay?

    This BCO forum was a huge help for me back in 08...hope to join in again.


    Thanks,


  • DiveCat
    DiveCat Member Posts: 290
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    @WellWater:

    Sorry to hear you are going through this ride all over again.

    You may want to post a new question on the Living Without Reconstruction forum. I believe recovery is quite different if you go flat, and you will also want to look into how to ensure still good cosmetics even if going flat (not them leaving extra “just in case”).

    That said, I did have a bilateral MX *with* reconstruction (sub pec implants) and even that was a day surgery, I only stayed on day surgery unit a few hours after recovery room. I have been in for further surgery a few times and never stayed overnight; and other women there for MXs with or without recon were in same boat and let to go home same day as long as they could demonstrate they could ambulate to washroom, etc. However, I have seen other women on here who were kept overnight or longer. I was myself happy to go home to my own bed and house!

    And pain pills are pretty personal. I really dislike the RX opioids and only tend to take for a day or two or not at all after any of my surgeries. After MX/recon I took them a couple days then switched to over the counters for a bit before discontinuing.

  • WellWater
    WellWater Member Posts: 4,524
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    Thank you. I am interested in recovery for a double w/o reconstruction. I will post in the other forum.


  • CHOCO1818
    CHOCO1818 Member Posts: 12
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    Hi, can anyone share recovery experience for bilateral mastectomy without reconstruction. no chemo or radiation prior to surgery either. I wanted to know if I can care for myself with no help. Thanks.

  • LivinLife
    LivinLife Member Posts: 301
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    A friend of mine came in and stayed with me two weeks. I was fairly independent within a few days though unable to drive (drains) and was not supposed to lift more than 5 pounds for the first 6 weeks or put my arms above my shoulders for 6 weeks. There is a preparing for surgery list you could search for.... it helped me buy a ton of bottled water instead of jugged prior to surgery, as well as putting anything I though I might need at shoulder level or below, including my medications. I was unable to squeeze the gunk out of my drain tubes into the pouches by myself the first two or three days - way too painful to ssstttrrreeettch around.... I had a lot of tissue build up and didn't want the tubes getting clogged like I had read about.... I also had a really heavy container of laundry detergent I put in many small bottles before surgery. I could not have pulled things from my top loader until about the 10 day mark. It was also difficult getting things from the mid- to back of the dryer until that point. I showered and all independently from get go - washing my hair was a joke though I managed.... bend over so your arms don't have to reach up - some surgeons don't let you shower from what I've read though mine said it was fine.... Not sure what else... If I think of anything else I'll write more....

  • CHOCO1818
    CHOCO1818 Member Posts: 12
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    thank you LivinLife for sharing.

    Choco1818

  • minustwo
    minustwo Member Posts: 13,078
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    Choco - here's the surgery suggestions.

    https://community.breastcancer.org/forum/91/topics...

    I did have expanders so can't speak to your exact question, but after the first couple of days I was managing OK on my own, although not driving.


  • kat333
    kat333 Member Posts: 38
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    I was able to care for myself, without help, after double mastectomy. Was released the evening of my surgery and had not had chemo or radiation beforehand. The most uncomfortable part were the drain tubes but was able to manage. I had prepared ahead so as to have things at an easy to reach level and not too heavy to lift, etc

  • tedbrogan5190
    tedbrogan5190 Member Posts: 12
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    muska - yes she did have a reconstruction as part of the surgery.

    She's basically in week 3 of recovery right now. Feeling much better, although still taking it easy. All of her drains are out.

    We've been told that chemo is recommended even though she only has 2 positive nodes...

  • CHOCO1818
    CHOCO1818 Member Posts: 12
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    thank you Kat333 it's encouraging that I may be able to handle myself. Because of covid I don't feel right about asking anyone to help me out.


  • Beekc
    Beekc Member Posts: 31
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    Choco, Have you completed your surgery? I seem to be handling the single drain I was given just fine. I did find a sweatshirt on Etsy with interior pockets which helps. I spent one night in the hospital so sleepiness after anesthetic was not an issue in self care. I’m sure you’ve helped many others in your lifetime and many would be honored to check on you over your first 24 hours at home. A drop in visit to be sure you have what you need would only take 10 minutes if you needed an extra hand. Accepting loving help and attention is part of the process I’m finding. Please update us.

  • CHOCO1818
    CHOCO1818 Member Posts: 12
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    Hi Beekc:

    no I have not had my double mastectomy yet, it's scheduled for later this month. I was told by BS that I will have 2 drains for 6 days.

  • CHOCO1818
    CHOCO1818 Member Posts: 12
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    Hi Kat333:

    Forgot to ask you did you sleep on your bed after you got home from BMX or on a recliner ? I don't have a recliner and it does not make sense to buy one just for this. Thanks.

  • Dlphnsgl
    Dlphnsgl Member Posts: 11
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    Hi everyone,

    I've been newly diagnosed with SBBC (4/16/21), Stage 1Ac (T1cn0) invasive (ER 100%+/PR 95%+/HER2-) 1.8 cm on Left and Stage 0 DCIS in situ non-invasive (ER/PR+) 2.0 cm on Right. The oncologist has referred me to get an MRI, radiologist, breast surgeon, and plastic surgeon to help me make sound decisions. He's recommending bilateral lumpectomy with radiation, followed by 5 years of Tamoxifen with potential to change after 2 yrs. Depending on outcome of Oncotype he doesn't believe I need Chemo at this point. Could change after surgery. I am set to meet with both the plastic surgeon and surgeon week of 5/10. I met with radiologist last week and he wants to do brachytherapy for 5 days after surgery but because of my age (56 in a few months) and because both my dad & his mother both died of cancer (both had it come back), I am leaning more towards double mastectomy instead. And debating whether I will have reconstruction. Reading so many posts here I'm not sure whether this is right area for my post by from what you all have written it was more towards what I need to know (i.e. post surgery for double mastectomy and recovery from that). From every thing I've read getting a diagnosis of SBBC isn't that common so I wanted to know, as the rest of you probably did and have done, to learn as much as I can about my diagnosis. I'm amazed at the people in my life how they are treating it like it's nothing, but I'm terrified. It's not their body so they can feel like that. I'm not saying they don't care...just that with all modern technologies today many act like it's not that big of a deal...at least the ones in my circle. Again though, reading a lot of the posts here I'm absolutely in awe over so many that have struggled and fight and have such incredible positive attitudes. I want to be just like you all!! I will do my best to fight this and maintain the same attitude but I gotta say, I'm scared. It's so much to absorb all at once and to just find out what's the best path for me has been a struggle. Yes, I have a couple of weeks to still make some sound decisions on which path I should take for myself but it's really tough. I commend each and every one of you here that have gone through it and are going through it as well. And for those before us that have as well. What a whirlwind of emotions it is!!!

    A newly diagnosed SBBC patient trying to figure out best path. Best of luck to all of you here...and your relatives that may also be going through this! xoxoxo

  • moderators
    moderators Posts: 7,913
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    Dlphnsgl, we're sorry you are here for this reason, but we wanted to send you a warm welcome to the BCO Community. We're so glad you've joined us and hope you find it to be a place of support, encouragement and information.

    We're sure other members will be by shortly to weigh in with their personal experiences and advice. In the meantime, you may find similar cases to yours in our Mixed Type Breast Cancer forum. Feel free to jump in some of the conversations or start your own new topic there. We hope this helps! Let us know if you need some assistance, we're here for you!

    The Mods

  • Beekc
    Beekc Member Posts: 31
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    WOndering how you are doing? My single went fine. No further reconstruction. Landing an anniversary event. Good distraction

  • Beekc
    Beekc Member Posts: 31
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    I’m sorry my reply didn’t send. My comments were that during a 9 week decision making wait, those weeks 3-6 were isolating. Please check in here. Read the April surgeries. I’m very pleased with a unilateral and flat closure. Felt very good by week 3. Drains tolerable. Add your thoughts to a May surgery group. Try the Am Cancer Society buddy system for input. This surgery and recovery IS a big deal but very lonely. I sent you a private message but I don’t check in here too often. After 3 weeks of lunches at home with friends I’m ready for our anniversary planning! Good books are available from the library. There’s lots to learn fast. It’s a challenge.

  • Dlphnsgl
    Dlphnsgl Member Posts: 11
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    Thank you Beekc. I've responded to your private message but appreciate the info you posted here as well. I'll look into your suggestions. It's good to have the world, literally, at our fingertips these days. I don't know how others before us that didn't have this available to them did it!! It is indeed very isolating, even with the internet. So I appreciate your encouragement and kind words.

    ~Dlphnsgl

  • Dlphnsgl
    Dlphnsgl Member Posts: 11
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    Thank you Moderators/All for welcoming me and offering really great advice and support. I will definitely look into what you've posted here. Very much appreciate you ALL! Here for others as well on my end!!

    ~Dlphnsgl

  • WellWater
    WellWater Member Posts: 4,524
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    I had my bi-lateral mast on 4/16. So this is 3 weeks out.

    My diagnosis is HER 2-, HR+ .... Stage 1A Invasive Cancer

    But caught early. This was my 2 round of BC so I made the decision to do a B-lat.

    No radiation recommended - Chemo my choice...not really necessary. I've done chemo 2x in my lifetime.

    Which takes me to immunotherapy. I tried that in '08 - Tamoxifen for 6 months then Aromasin for 6 months.

    I couldn't deal with the side effects of either drug so I stopped completely.

    Now, my breast dr is saying she agrees with my decision but I will have to have regular exams to check for tumors. Ok by me. I am 73 and also have Metastatic Lung and Lymph cancer. I am 4 years in remission and plan to stay there. How's that for optimisim!!

    In the meantime I am looking for Traditional Chinese Medicine to perhaps replace the immuontherapy drugs. With my diagnosis, age and surgery so far I feel ok taking the chance. Any opinions?


  • avag
    avag Member Posts: 15
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    I recommend Dr. George Wong for herbs. He is wonderful:)

  • KarolEK77
    KarolEK77 Member Posts: 3
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    Hello everyone... I just joined this community and I am really glad to find a place where I can share with people who understand what I am going through right now and be able to encourage each other. I think recovery from a double mastectomy differs from person to person.

    Many factors can speed up or delay the time to feeling better. In my case in the same surgery I had the expanders placed, these go under the pectoral muscles and that generates a much slower recovery, I also had 4 nodes removed from my right armpit. In my case I had 4 drains placed and they were removed one every week. The important thing is to follow the advice that the doctor can give us about what activities we can and cannot do, especially related to the weight we can carry, the movement of our arms and physical rehabilitation exercise options.

    Greetings from Quito, Ecuador

    Pd, sorry if my English is not so fluent, I am practicing and with certain words, especially medical, I help myself with a translator.