Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Recovery time-line after bilateral mastectomy and NO recon?

llm822
llm822 Member Posts: 4

Hi everyone -

I'm going in for a bilateral mastectomy this Friday, and I'm wondering what to expect as far as recovery is concerned.  Most of what I've read has been about recovery after mastectomy AND reconstruction, but I'm opting out of recon.  I imagine my recovery will be easier, but how much so?  They said I should expect to be in the hospital for at least two days, and after that I'll be staying with my parents.  I know they're capable and willing to do whatever I need, but I'd really like to be able to prepare them for what's coming!  Obviously, I know everyone's different and no two recoveries are the same, but can anyone who has been through it tell me what their recovery time-line was like?

Thanks!

Lisa

«13

Comments

  • Jellydonut
    Jellydonut Member Posts: 20
    edited January 2010

    Hi Lisa!

    Yes, recovery does vary from person-to-person. 

    I took off eight weeks from work and it took about that long for full recovery.  I'd say tho, after  about three to four weeks I was feeling ok.  Driving was not an issue after about the 2nd week (when the drains were removed).

    You'll do fine!  Just take it easy and let everyone pamper you!   

    Good luck!

    Jelly

  • lovinmomma
    lovinmomma Member Posts: 105
    edited January 2010

    I slept on the recliner for the first 2 weeks due to having the drains in. The drains were not painful, just annoying. I was feeling pretty good by about the 2 week time frame and was moving pretty good. Stay on your meds and keep them going for a while. Do the stool softener. 

  • Kim09
    Kim09 Member Posts: 5
    edited January 2010

    I took 5 weeks off for my bi-lat mastectomy.  The drains were the biggest issue as I started out with 4.  It took 3 weeks before they were all gone,  I was able to sleep in bed by using pillows on each side.  I was off the perscription strength meds after 2 weeks.  After that tylenol.

  • Summer23
    Summer23 Member Posts: 2
    edited January 2010

    I also had bilat. mastectomies and the drains were the biggest issue for me as well.  I didn't experience much discomfort from the actual mastectomy site just from where the drains were in my chest and the incisions from the drains on each side.   Prescription pain meds helped those first two weeks especially at night so I could get some rest.   Both of my drains were out by three weeks and it made a huge difference.  I felt really pretty good after that.   I agree with using the stool softener and I'd start it in the hospital.  Anesthesia and narcotics can cause constipation and you don't want that on top of everything else!  

  • Lolita
    Lolita Member Posts: 5
    edited January 2010

    I was back at work after 2 1/2 weeks.  In the hospital for only one night.

  • ElaineD
    ElaineD Member Posts: 16
    edited January 2010

    I don't work, so can't advise on how long you may need for that. It's actually not a painful procedure (incredibly), and I felt fine after a few days-but was careful about lifting anything heavy for a while.I didn't need any strong pain relief either-just occasional parcetamol. Recovery after a hysterectomy, for example, takes much longer!

  • sue-61
    sue-61 Member Posts: 262
    edited January 2010

    Lisa, I had surgery on a Wed afternoon, came home on a Fri morning, had my adult kids stay with me until the following Monday and I was fine alone after that. Drains are annoying, but I slept in my own bed on 2 pillows and was able to get myself out of bed and take care of myself,really, 5 days post operatively. And I was 61 at the time. Let people spoil you. You will do fine. The pain in minimal. My underarms were the most painful as I had sentinel node biopsies, but it was nothing that I couldn't handle without a couple of Ibuprofen.  Best, Sue

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited January 2010

    I was back to work after 2 1/2 weeks as well. Went back the day the last drain came out. My commute is an hour drive to work and then back so I had to make sure my reflexes were okay and I could turn to check lanes and such. You'll be surprised to find many muscles you need to turn your head to check traffic!

    I have Fibromyalgia and my docs and I were expecting pain issues, but I left the hospital without even Tylenol! I was so relieved! Until the nerves started regenerating....itch!!! Pain meds hold you back to a certain extent and slow your healing. Used at night they can allow you the deep restful sleep you need.

    If one of your parents could wash your hair for in the kitchen sink that would really help. It's awkward/hard to raise your hands over your shoulders. Otherwise there are no restrictions except lifting anything more than 5 lbs.

    There are no muscles, bones or organs involved with this surgery, so the pain is surprisingly less than, let's say, oh, my hysterectomy! Yell

    BUT, everyone does heal at different rates. You might feel fine in the beginning and then do too much and set yourself back. If you feel okay, enjoy it! Relax...and heal!

  • Erica
    Erica Member Posts: 237
    edited January 2010

    Just reading these posts, you can probably see that Barbe is right--we all heal differently. I was in the hospital overnight, very little pain. After the first few days I only needed Tylenol, with the occasional half vicodin at night. The drains were definitely the most uncomfortable and restricting part. Before their removal, I found it hard to sleep in bed, even with a wedge pillow, so I slept in an easy chair and ottoman in my bedroom. The wedge pillow was very helpful for several weeks--lying flat just didn't feel as good.

    I was able to drive after a week, though I limited myself until about two weeks. After a week the nerve regeneration Barbe mentioned started. In my case, it caused extreme sensitivity. I could hardly bear to have clothing touch me. Silk or satin tees or camis are best if that happens because they glide over the skin. Some old WinterSilk tees were a lifesaver for me. The sensitivity lasted a total of about three weeks, though it gradually improved during that time. It didn't stop me from resuming normal activities.

    I highly recommend physical therapy with a therapist trained in working with breast cancer patients. I started a mere two weeks after surgery and this kept scar tissue to a minimum and helped me regain my full range of motion (at two weeks, the therapist worked very gently).

    Hopefully, like many of us, you'll be pleasantly surprised at how little pain there is. 

    Perhaps you would find my non-profit website helpful: BreastFree.org. Lots of advice, information, personal stories, photos.

    Barbara

  • scooter-12
    scooter-12 Member Posts: 26,606
    edited January 2010

    Hi Lisa...Much to my surprise I had no pain, and didn't need any pain meds.  For the first two weeks I was really tired and slept a lot, but after two surgeries and much stress go figure.  I  slept in a recliner for a month until my last drain was removed.  The drains were annoying, but not painful.  I hope you have a speedy recovery.  Best wishes.

    Barbara...great website...

    Anna

  • formykids
    formykids Member Posts: 11
    edited January 2010

    Hi Lisa

    I had bilateral mastectomy with a sentinel node biopsy and will be having delayed reconstruction,  on Jan 12 and I have been quite suprised at how well I am feeling.  Like the others have said it will vary from person to person so I can only share my experience and hope it will give you some comfort.  I had two drains that both came out on day 5.  The drains are a real nuisance and uncomfortable. I took tylenol 3 the first day, then switched to extra strength tylenol 't as I really didn't have pain, it was more uncomfortable and didn't like the spinny feeling on tylenol 3. As well I will take gabapentin for 21 days, which is apparently for the nerves. 

    Emotionally I was a wreck leading up to surgery, but feel so much better mentally now.  It really is much better to be on this side of things.  I am awaiting pathology reports, so a little anxious about that. I went for an 1/2 walk 2 days after, and have been walking 1-2 hours per day since. I have just been very diligent about not lifting over 10lbs, no pushing or pulling for 4-6 weeks as per doctors instructions.  Which is so sad, because I can't vacuum or carry laundry baskets. LOL!

    Take care and my thoughts will be with you as you get through this difficult part.

    Cathy

  • llm822
    llm822 Member Posts: 4
    edited January 2010

    Thanks for the info.  It sounds pretty much like what I was expecting lol

    I know I'm going to be out of work for a loooong time - I'm a toddler teacher, so lifting is part of the job requirement... and those one-year-olds can be heavy!  However, I'm really hoping to be up and active as soon as possible.  Sitting around doing nothing is NOT a good thing for me - I almost went out of my mind when I injured my knee last year.  I'm not planning on doing anything crazy, no laundry or vacuuming that's for sure =)  But it'll be nice to be able to go for a walk, out to eat with some friends, anything to just get out for a bit.

  • formykids
    formykids Member Posts: 11
    edited January 2010

    I can't imagine lifting 1 year olds right now, so yes probably a good idea to stay off work for a while until you have fully recovered.  Take the time to heal properly and fully.

    I have been out to a movie the other night, went out for groceries yesterday (with help of course) and then a walk right after in fresh fallen snow. It was really strange having the help for groceries and I felt totally useless, which I hated, but at the same time nice to have the help.  I found going for groceries and the walk was too much, and perhaps I over did it, because I was really tired and more uncomfortable than usual after that, and had to have a nap.(don't usually do that either) All of these things are just so foreign.  Our new world, that comes with the good and the bad.

  • chainsawz
    chainsawz Member Posts: 113
    edited January 2010

    I had a bmx without reconstruction, and I took 6 weeks off work.  I am glad I took so much time off because I had the drains in for 4 weeks :>  For the first two weeks, I felt good if I didn't move....of course that isn't an option!  I took pain meds for those two weeks, and then tylenol for the next two for discomfort - mainly the feeling of tightness around my chest.  Just take it easy, rest and let your body heal.   I'm glad they are keeping you in the hospital for a day or two.  I had my procedure and was immediately sent home. 

  • nancyd
    nancyd Member Posts: 556
    edited January 2010

    Everyone will recover at a different pace. My surgeon sent me home the day after surgery with two drains (one very large one on the cancer and axillary node dissection side; one small one on the prophylactic side). I took it easy the first couple of days. Because I didn't have recon then, my stomach was in working order so had no problem getting in and out of my regular bed. I just had to get used to sleeping on my back until the drains came out.

    The smaller one was out in less than a week, but the larger one was in longer. They're annoying, but don't rush the doctor to remove them unless they are driving you completely crazy. The seroma that can develop if they're removed too soon can be painful and persistent. Once they were out, I was able to sleep on my stomach...and life was good again, lol.

    I didn't have very much pain...can't remember even taking any pain meds. If I did, it was only for the first few days. The only thing that held me back was the cumbersomeness of the drains. The large one looked like a small concertina (or, as I also said, like a clown's pocketwatch). Once they were out I was good to go and concentrated on building my energy back up.

    About six months after the surgery (a while after I finished my rads), I went for some physical therapy. I had excellent range of motion after the surgery, but after rads things tightened up a bit. The PT was useful, and gave me a whole list of exercises to draw on even now.

    The time off for surgery was only four weeks. I would have liked an extra week, but only because it was summer and I was having fun lounging around my brother's pool. Everything else was worked into the beginning or end of my workday schedule...only taking a day or two off afterwards for dr's appointments that fell in the middle of the day.

  • nancyd
    nancyd Member Posts: 556
    edited January 2010

    I forgot to add the two most disconcerting things (after the drains, of course). One, as Lisa mentioned, is the tightness around the chest. This has lessened with time and exercise. I only feel it slightly now if I really try to expand or stretch my chest. PT helped alleviate that.

    The second thing was the feeling of fullness under my arms. I used to say it felt like I had potatoes tucked under my arms. I'm not sure if it comes from swelling, fat that's been displaced, damaged nerves, or a combination of all those things. I still have a little sensation of something there, but they're not potatoes anymore.

  • Celtic_Spirit
    Celtic_Spirit Member Posts: 9
    edited January 2010

    My bilat was in March 2008. I took two weeks off from work. The drains were removed in less than a week. I was walking 1+ miles daily in a week's time and driving. Took vicodin as needed. Couldn't sleep on my sides for several months, but otherwise slept well. All normal activities resumed in a 2-3 weeks. Took my first really strenuous hike seven weeks after surgery.

    By the way, I went home the same day as my surgery. As my surgeon put it, at home "the food is better, the bed is softer, and you're less likely to pick up germs." I also didn't want to be kept awake all night by someone crying/screaming/moaning in the bed next to me (happened to a friend of mine) or have a roomate with a million visitors. I had a good support system at home, which is also a reason my surgeon felt comfortable releasing me the same day.

  • ThereIsHope
    ThereIsHope Member Posts: 18
    edited January 2010

    I had a bi-lateral MX on January 5th of this year and it was much less painful than I expected it to be.  The area was pretty numb for a few days.  I am sore, especially under my left arm where nodes were taken out, but get pretty good range of motion.  The drains were out after two weeks and now I'm filling up with fluid.  It is more bothersome than anything.  I expect the surgeon will need to drain it out when I see him in another week.  That will diminish over time.  I have never considered reconstruction.  If I were younger, maybe it would be something I would do.  I am 61 and will be satisfied to just be able to put on a prosthetic bra (or not!) and get all of this behind me.  Waiting on my OncoType score and will hopefully only require hormone therapy.  You will do just fine and I think you will also be surprised at how good you will feel.  I agree that the drains were the most bothersome. 

  • kw212
    kw212 Member Posts: 4
    edited January 2010

    Hi Lisa,

    I'm about a week ahead of you, had my bilateral/no recon last Thursday, 1/21. Stayed one night in the hospital, then home. Much less pain than I expected, on account of the numbness, which is just odd, but preferable to pain. I have three drains, which are annoying and gross, but you get used to them, and they should be out soon. It is hard to keep from overdoing, and to let others help you, but try to take it easy. Walking is good. I stopped taking Oxycontin after the second day, as it was making me feel stupid, and Tylenol seems to do the trick for the achiness that does break through.

    I had family visiting which turned out to be a very pleasant distraction...went out to dinner on Friday, etc. But NO CHORES! DH and DS (12) are doing their best to help around the house, but some things I just have to let go... Like you and formykids, I find it so hard to have that useless/helpless feeling; just another loop on the emotional roller coaster! One thing that helped pre-surgery was doing some sit-ups, as it made it easier to get up from sitting or lying down without pushing off with my arms. 

    I am planning on being back at work 3/2, so 6 weeks off. My job is physical, like yours, (I work at a bookstore and do a lot of lifting/pushing, etc.) and I know I will overdo if I go back too soon. So I am trying to enjoy my bc "vacation" as much as possible, catching up on reading, sleep, etc. We deserve it!

    I'll be thinking of you Friday, you'll do great! 

  • jinmo
    jinmo Member Posts: 55
    edited January 2017

    I know this is an old thread but it is the exact topic I was looking for, so I am posting to bump it back up a bit.

    Thank you to all you women who posted on here with their experiences. I will be doing BMX/no recon in a couple of weeks and this information was amazingly helpful.

  • ksusan
    ksusan Member Posts: 461
    edited January 2017

    jinmo, I had bilateral with sentinel nodes (4 drains) and was home that afternoon. I had very little pain (only pain from the binder hitting my right underarm) and by the next day was walking on a very slow treadmill. My drains were in for awhile because my surgeon was on vacation, though they never had much output. I worked from home starting with a few hours the next day, and at 2 weeks had someone drop me at work for the afternoon (I still wasn't driving). At ~4 weeks I was driving and back at work and at 6 weeks I was starting chemo.

  • jinmo
    jinmo Member Posts: 55
    edited January 2017

    Thank you ksusan!

  • PeppermintPatti
    PeppermintPatti Member Posts: 10
    edited January 2017

    jinmo, hello, I, like you have appreciated everyone's input! I had my bmx on 12/05/16 and scheduled to return to work on 01/30/17. I was in the hospital for 2 days. Thank God my grown son stayed over when I came home. He helped me track meds, empty the 4 drains, and was around for support! The drains were quite cumbersome, but manageable. First two came out after two weeks and the last two came out on week 3. I took meds first two weeks, then Tylenol, if needed, at bedtime, and yes, took a laxative to assist. I used lots of pillows and rested a lot. I tried to get out walking at first on my long drivewsy, then walked a mile or so when weather permitted. I am working on my stamina currently. I seem to peter out easily, and with hopes this will pass over time. I am currently going through recon...slowly since my skin was radiated 18 years and 10 years ago respectively. So far so good. A bit uncomfortable at night, but I use my pillows to help.

    This website is awesome! Wonderful warrior women!

    Best wishes jinmo! We are here for one another! :)

    ...Patti...



  • groucho2
    groucho2 Member Posts: 8
    edited January 2017

    Hi Jinmo. I'm 6 months past my bilateral mastectomy with no reconstruction. I spent 1 night in the hospital and went home the afternoon after surgery. I needed someone to stay with me the first 2 nights (I live alone). I wasn't feeling very well the day after surgery and I have 4 active dachshunds. Frankly, I was afraid to be alone and the dogs made it more difficult. I took the Rx pain meds twice after going home, and found that I didn't need them. I was able to use over the counter drugs, but I had very little pain (Surprise!). I arranged to take two weeks off of work (desk job), but worked 1/2 days beginning 10 days after surgery. I went back to work full time the third week after surgery. I did not experience the "iron bra" effect (lots of tightness around my chest), but it appears lots of women do. I got my first drain out 1 week after surgery and my second drain out 2 weeks after surgery. Yes, the drains are a hassle. I started driving after I had the first drain removed (it was almost painless). My doctor told me I could drive as soon as I felt like it.

    I found my range of motion was limited to just above my head (with my arm outstretched). Check with your doctor before doing stretching exercises. I was able to reach everything I needed to reach using a step stool. If you don't have one, I'd recommend getting one (or borrowing one). I used a nail apron from Home Depot to hold my drains, and used a lanyard in the shower to hold them. I slept in a recliner the first two nights, but moved into my own bed the third night. I didn't have any trouble with my drains while in the bed. It did take a few tries to find a comfortable position.

    I ate lots of both fresh and frozen meals my friends brought by. I was very grateful to not have to cook.

    I started walking around my neighborhood 3 days after surgery. First, it was just to the end of the block and back, but eventually, I was walking a mile a day (without my dogs) before I went back to work. I was able to walk my dogs with the help of a friend after two weeks.

    I moved into a new house 1 week before surgery. I don't recommend doing that. I was able to spend a lot of time unpacking and putting stuff away the two weeks I was off work. I took it slow and easy. I did tire easily and that lasted for about a month. I slept 10 hours a day. Six weeks after surgery, I tried to mow my lawn and wound up in the hospital two days later. DON'T overdo it!

    Everybody recovers differently and feels pain differently. I wish you a speedy, nearly painless recovery, Jinmo.

  • castigame
    castigame Member Posts: 336
    edited January 2017

    just been told stage 0 DCIS and 2a or 2b on the right. Told the surgeon both have to go completely. I know I have to rely on DHL and family members for everything in the beginning. Just to minimize difficulty. What type of clothing I know it should be easy to be in and out of. Frumpy looking is inevitable but I would like to minimize that also.

  • ksusan
    ksusan Member Posts: 461
    edited January 2017

    I'm not sure that frumpy is inevitable. I found button-up blouses easier than pullovers.

  • FredFights
    FredFights Member Posts: 3
    edited January 2017

    I went back to work (desk job) four days after my bilateral mastectomy (one night in the hospital). I found layers to be my friend, with suit jackets.

    I wore a cotton sports bra as the first layer. The second layer was a tank top with a shelf bra. I would tuck the fake boob into the tank top, while the sports bra kept a smooth surface against my bandages and staples.

    The tank top would hold my drains tightly to my side.

    Over this, loose fitting shirts or suit jackets. Shawls or interesting wraps detracted from that area - I definitely wasn't looking frumpy.

  • Leydi
    Leydi Member Posts: 53
    edited January 2017

    I, too, had bilateral mastectomy with ALND on one side and SNB on the other, no reconstruction. I went home the day after surgery and quit taking the prescription pain meds after one pill. I found that I actually felt much better off the pain meds. They made me feel out of sorts and unsteady on my feet. I took regular OTC ibuprofin and did fine. Every time I got up, I felt a lot of tightness and would walk around and move gently until it loosened up.

    My surgeon said that I should expect to take only 1.5 to 3 weeks off work (desk job). I thought he was nuts and ended up asking for 3.5 weeks leave. He was right. I could have easily returned at 2 weeks even though I had a stubborn drain that wouldn't stop producing. It was finally pulled about a week after I returned to work.

    I did find sleeping in a recliner helpful for the first couple of weeks.

  • jinmo
    jinmo Member Posts: 55
    edited January 2017

    Hi all, I am back and just wanted to give a general update on my recovery. Thank you, peppermint, groucho, fredfights and all.

    My surgery was 1/17. I stayed in the hospital one night and was glad to be there, but ready to go home the next day. The hospital aides and nurses had me up walking the halls within a few hours of getting to the room.

    The surgeon ended up taking 5 nodes out on the cancer side (left), so that side is a little more sore than the right. I am still waiting for pathology.

    I have been able to sleep in my bed from the first night home, with the help of a wedge pillow. My husband did have to help me sit up and get up to go to the bathroom the first night.

    I have a post-surgical camisole which the hospital provided. That, and yoga pants and large men's flannel shirts are my friends right now. Frumpy definitely applies!

    They gave me Percocet, but I stopped taking it this morning and moved to Tylenol. I may take another Percocet for night rest.

    I have gone for short walks, nothing strenuous, and I am doing the exercises they gave me twice a day.

    I got to take a shower yesterday since my surgeon used Dermabond to seal me up, and apparently it's allowed to get wet. It was so nice to be clean. DH had to wash my hair though, still can't lift arms over head.

    My overall feeling is that this hurts less than I thought it would, but that I am still pretty tired.


  • Notmyself
    Notmyself Member Posts: 1
    edited January 2017

    Lisa,

    I am a prek teacher (4 and 5 year olds) and I had a single mastectomy on aug 24th with no recon. I was able to go back to work on October 19th with a few restrictions on lifting still in place. It's such a physical/demanding job of all day being "on" with these little ones...so truth be told, I was absolutely exhausted every day (most weeks crawling by Friday), but in the past few weeks I feel so much more like myself. Going back to work was great for my mental health since it made me feel more normal.