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...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

Getting Double Mastectomy in 11 Days, Any Advice ?

Options
Scaredbutstrong
Scaredbutstrong Member Posts: 4

Diagnosed with bilateral IDC 10 days ago. Multiple tumors are located back towards the chest wall. At least one of them is HER2 positive. Double mastectomy is scheduled for 10/27/20. I opted for no reconstruction. I know basically what is involved in the surgery. I know that I'll go home with 2 drains. I also know that everyone has a slightly different experience, but would love to hear from people who have been through the process. Particularly how long it took to be able to move around, take a walk, drive etc. I live alone and am staying with my parents after surgery. I do love my parents and am grateful for their help, but I want to be back in my own home as soon as possible. I'm a bit of a hermit and value my alone time. Just feeling a bit anxious about being around others 24/7 and possibly getting cranky and obnoxious. I don't want to be that way, but I know how I feel whenever I'm stressed and can't get off by myself for a bit to calm down.

Comments

  • minustwo
    minustwo Member Posts: 13,153
    Options

    I live alone and my grown son came to stay for 4 or 5 days. I was able to spend the first night in the hospital & that worked really well. I was ready to be on my own before the week was out - and off the heavy pain meds so I could drive again. But this was a 40 something guy so he didn't hover anyway. Just be sure you take it very easy. There are lots of internal stitches that you could rip. I drove myself to every post-op with no problems. After my recurrence, I drove myself to every chemo and every radiation.

    I understand what you're saying about your parents. I loved my parents too, but I think I would have slit my throat if I had to stay at my parents or they came to stay with me. Since they were deceased, I didn't face that dilemma. But you're allowed to be cranky & obnoxious when you are recovering and in pain - regardless. I think this link to surgery tips may help.

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

  • LivinLife
    LivinLife Member Posts: 301
    Options

    I had a BMX with SNB 6 1/2 weeks ago. I live alone in PA though a friend of mine from WI came to be with me for the surgery (surgery was 4 hours from my home) and then return to my house for about 2 weeks with me. I saw a list somewhere on this site about things to do and have on hand prior to surgery. A lot of it was helpful so do a search for this if you haven't already. Like Minus, I was overnight in the hospital for a night. The first two or three days I would not have been able to strip the drains by myself though could empty them by myself right away. I stripped them every time I emptied them, which isn't necessary though I read too many stories about tubing getting plugged so did it just as a precaution.

    I drove within a week though it's COVID and I hardly go anywhere, work from home now and live in a fairly small town so.... note - not a good idea to fully turn if doing a lane change. That's not something I had to do where I live though backing out of the garage was a bit tricky and I only parked in "pull through" parking spaces until a week ago. Other than that I could do nearly everything - keeping in mind the 5 pound weight limit the first 6 weeks and not taking my elbows above my shoulders so reaching was not an option. I did not do housework the first 5 weeks or so other than cleaning a counter I used at times, a bad job of the tub once and a fairly bad job of the toilets twice - they had to be cleaned to some degree though I had to be very careful about my movements - I was ok and the tub and toilets were clean enough at that point. I can dust mop my floors, mop, vacuum, etc. at this point though am still very careful about how much I do at this point.

    Prior to surgery I slept about 7 hours a night and not necessarily well. After surgery I slept 10 hours per night and am just down to about 9 now. i just started sleeping in my bed last weekend. I was able to stretch out on the couch about 3 weeks after surgery... the pile of pillows thing never worked for me so I slept in a really crazy way curled up on one end of the couch with my legs stretched out onto an ottoman and the seat of a recliner - just crazy though the only way I could be comfortable and not pull on my incision area or use my arms too much (5 pound limit). I rarely napped though was quite tired the first 2 weeks or so. I had to start back to work, even if fewer hours initially, in less than a week. I only work half-time when I'm working my full level due to other health issues so...that was fine though tiring. Hope that helps.... Also, I developed cording in both arms and already had chronic tennis elbow in my SNB arm so just started P.T. Tuesday - already reaping the benefits of that...

  • abc54321
    abc54321 Member Posts: 3
    Options

    Scaredbutstrong, I am wishing you all the best!

    My surgery was seven months ago (single mastectomy with five lymph nodes removed) and the one thing I beg you to do is ask your Anesthesiologist about doing a nerve block, and light anesthesia!

    Mine did that for me - he had to explain to my surgeon what he wanted to do, and now my surgeon says he will do this each time he can.

    I woke up clear headed and not in much pain, and went home that day. That was a Friday, and I really didn't feel much pain until Sunday. I even ran over to my neighbor's house on Saturday to show her how well I was doing!

    It made Such a difference! I felt strong enough to handle the pain as it started slowly coming on.

    The drains are a drag and know that once they are out you will feel much better.

    Ask your doctor for an rX for Gabapentin. It was the only thing that helped me sleep after the block wore off. The pain from the incision, and also the burning pain on my arm because of the lymph nodes being removed. That burning was almost as bad as the incision. Gaba does not make you loopy or drug out.

    I live with my husband and the only help I needed was for him to walk the dogs for about four days. Then I walked with him, holding only one dog. It was nice having him bring me things the first four or five days, so I would not have to get up and down.

    But once the (two) drains were out, Katy bar the door! I felt 100% better having them removed. You will, too.

    I could have driven sooner than I did, but I have a stick shift car, so had to be sure I was strong enough, strength-wise.

    I am a hermit, too, and think you will not have to be gone from you own home too long. If you get the block, I'd guess a week or so. You will feel better once in your own home, as you will be more comfortable.

    Before surgery I bought a bunch of large button-up shirts. One had pockets on it, and I would tuck the drain bags into them if I had to go for an office visit. The tube went between the buttons, so no one really saw anything.

    If I think of anything else, I will add it later. Sending you peace and love.

  • Ballerinashavefins
    Options

    Hi Scaredbutstrong,

    I had a bilateral MX on 10/6 no reconstruction. My left side was a modified radical mastectomy where she took out 6 lymph nodes and the right side a simple mastectomy. I'm 12 days out from surgery and I'm very mobile/independent. I just got back from grocery shopping. I concur with the nerve block. I had this done and have had zero to little pain post surgery. I did not need any pain medication outside of Tylenol to manage pain which has been great. I did feel woozy/tire easily the first 3-5 days but I was able to take a 1/2 mile walk or so the day after surgery and have been able to walk up to 2 miles at once each day to get fresh air. I didn't get my appetite back until 3-4 days post surgery.

    The drains have been the biggest hamper on my mobility/independence. I was allowed to shower 2 days post surgery but could not do so alone. I needed someone to help remove the drain bandages and wash my hair as my range of motion would not allow for me doing either effectively. That was short-lived and since about 8 days post surgery I've been able to shower alone, wash my own hair while holding the drains in my one hand, change the drain dressings, etc., while holding the drains in my one hand. The drains and my left side where she took the nodes are the only things that give me pain these days. My left side definitely has a ways to go in terms of regaining range of motion but its manageable. I was able to drive for the first time alone yesterday and I took my two chihuahua's to the vet. I have a husband but he doesn't have a lot of ability to take time off of work and I'm pretty independent so it was REALLY hard to allow him to assist me with showering and needing him to drive me to and from appointments for the week or so it took for me to regain independence BUT it was only a week that was needed.

    Button up shirts were very helpful. I also had foamy pillows for support under my back for my tailbone and sitting up because side sleeping is impossible. When I did rest in my bed, I used a wood block to keep my meds, water, etc., on my one better right side to reach because reaching with the left side was impossible. All of these things helped me be more independent in my recovery. I also got a LONG phone charging cord to stretch all the way to my bed. As livinlife said sleep post surgery was lacking - maybe 2-3 hour stretches at a time so it was helpful to have my phone near by fully charged at all times so I could use it if I couldn't get back to sleep.

    I was so scared of the surgery itself. I've never had major surgery so I was petrified, especially of the anesthesia. I hate that anyone else has to go through it. I know we're all different but I can definitely tell you for me the first 2-4 days were the worst but each day after that I felt a little more human and became more mobile. Day 5 I even managed to do dishes and straighten up the kitchen without help. Oh - be careful of those drain tubes - it hurts when they get caught on door knobs, door handles, etc. and its easy to do. Make sure you have safety pins to pin them to your shirts and if possible tuck the tubes into your pants when your moving around the house. Stretch pants have been my BFF's since surgery :-)

    Make sure they show you how to strip the drain tubes before you leave the hospital and insist on spending the night. They considered sending me home post-surgery and I opted to stay. Before I left they showed me how to empty the drains but not strip them. I had to figure that out when one got clogged.

    Good luck - sending tons of positive thoughts your way as you prepare for your surgery! If you have other questions I'm happy to share anything you want to know.


    ETA: Start taking senna pills a couple days before surgery. I was really stopped up post surgery and not to be gross but that first time going to the rest room was more painful than the BMX. The senna pills have worked wonders!


  • bcincolorado
    bcincolorado Member Posts: 4,701
    Options

    I was not allowed to shower at all with drains per my instructions (every surgeon is different) and did sponge baths after mine. Had to wash my hair in sink or use dry shampoo and brush i after that which helps clean at least.

    Make sure you have easy meals ready to go too since you may not feel like cooking right after surgery or be limited on what you can lift as well.

    Best wishes for a speedy recovery!

  • romashka
    romashka Member Posts: 24
    Options

    Hello! I had mastectomy without reconstruction. I see you've received wonderful advice and support here. I found using a belly-bag for the drains very helpful. Healing time is different for everyone. I took longer and thought something was wrong with me. Until I realized that I just took longer. :)

    I made sure certain things were placed at waist level (as much as I could) to avoid reaching and bending. I needed plenty of help but worked each day to do more. Rest is important but easier said than done.

    I already had a hospital type bed tray and I used it to sit each morning to brush my teeth. Standing over my low sink was uncomfortable at first.

    Some days a snug fitting tank top felt good and others I needed it loose.

    Pillows for the car were very important. Just the vibration of riding felt agitating. Having a pillow or something on each side secured me.

    I used a bellybag for a while until I was able to carry my handbag again.

    Wishing you well. You have much support here.

  • Scaredbutstrong
    Scaredbutstrong Member Posts: 4
    Options

    Thank you everyone for the responses. Several of you told me some things I didn't think about, mainly dealing with the drains. I'll have to say, that the one thing that stood out was the weight limit on lifting. Only 5 lbs for 6 weeks ??? Ack ! I'm going to need help longer than I thought. I have chickens, ducks, geese etc. Their feed comes in a 50 lb bag. I guess I was thinking after a couple of weeks, I could handle those. Well, I'm sure I can find someone to help with that.

  • WC3
    WC3 Member Posts: 658
    Options

    Scaredbutstrong:

    Can you put the feed in to a bin you can just scoop from? Also, I purchased a small step stool for use after surgery as I knew I was not going to be able to reach up into cupboards. It came in handy

  • Scaredbutstrong
    Scaredbutstrong Member Posts: 4
    Options

    I can do that. It's actually what I do now, but it won't hold enough feed for 6 weeks. I think what this all boils down to is that I'm very independent and it practically causes me physical pain to ask for help. I'm having a hard enough time asking for help for the two weeks I'd thought I'd need (despite plenty of people volunteering). When I saw the 6 weeks with no heavy lifting, I just about had a panic attack. It doesn't help that I also have ADHD and trying to organize anything is a nightmare. I've really just got to bite the bullet and get over my phobia of asking people to help me.

  • LivinLife
    LivinLife Member Posts: 301
    Options

    I too am very independent. A main criticism others have of me is I do not ask for help. I had no choice this time. I found letting others help was wonderful for them and reassuring for me (to have more help and/or emotional support than I thought I would). I have a lot of other health issues and know I will need help at other times. this really helped me break the ice. I hope the same is true for you....

  • SuQu31
    SuQu31 Member Posts: 73
    Options

    Dear Scared,

    Maybe it will help to think of it this way: just as you have physical pain from asking for help, some people seem to have pain from wanting to help and not being allowed to. I'm not talking about the bossy sorts who really just want to run your life; I'm talking about people who need to help because they are just nice people and it is their way of dealing with the distress of seeing someone they care about going through a hard time. So, maybe you could think of specific things for them to do that won't bother you so much. For example, I did not want visitors or phone calls. I asked a few people to help me by updating different groups of people on how I was doing (family, work friends, etc.). That also helped my husband, who was very tired and stressed as well. And frankly, if people get too pushy, just tell them that the biggest thing they can do to help you is be your friend and allow you to handle this in the way that is best for you and makes you comfortable.

    For practical advice, I had a mesh waist pack for my drain tubes that I wore in the shower, and bought some waitress aprons to hold them when out of the shower (along with my phone, glasses, etc.) I had to have another surgery ten days after the BMX, so I had drains a very long time. Both bought on Amazon. And a shower stool if you will be allowed to shower early on. It will help with any unsteadiness.

    Best wishes to you!

  • WC3
    WC3 Member Posts: 658
    Options

    Scaredbutstrong:

    Before my surgery, my family had a maid come in and clean, I had my bedsheets and blankets laundered, stocked up on food and ordered a small step stool to make sure everything would be within reach and I would not need to do any lifting or reaching.

    The one thing I needed help with was dressing. I was unable to refasten the surgical bra myself for the first week or so. I bought a lot of button up shirts because pulling things over my head was completely out but I had difficulty getting my arm through the second sleeve on my own. I eventually figured out that I could drap half the shirt over an IV pole I have and use that to hold it for me such that I could slip my arm in.

    The most integral thing after surgery for me though was the bed wedge that was gifted to me because I could not get myself up from a flat position.

  • GalleySlave
    GalleySlave Member Posts: 17
    Options

    I am having a mastectomy next month. (Not sure if this will be bilateral or unilateral mastectomy as I"m still waiting on a needle biopsy on the contra lateral breast and the genetic testing.) Please tell me:

    • Is “no hospital stay” the norm in this day of COVID? (Finding out that this was Outpatient Surgery surprised me)
    • Were you able to toilet yourself or did you need help? (I know it’s shallow of me, but I hate the thought of asking DH to have to do that. He’s going to have SO MANY other ways he’ll be supporting me.)

    Thank you for your help

  • castigame
    castigame Member Posts: 336
    Options

    galley,

    Wish you speedy healing first of all.

    My DMX was 4 yrs ago. Stayed overnight only and was told you can go home. Total number of hrs was about 20 tops.

    DMX or singleMX wise. It just sucks psychologically. And for about two weeks my arm movements were limited.

    Cleaning in the toilet was doable. But one time, my hubby wiped me off in the shower. You will learn how to be real slow and deliberate.

    Take care.

    Mimi


  • LivinLife
    LivinLife Member Posts: 301
    Options

    My BMX was a year ago August. I go to my hospital room after recovery about 5 p.m. - stayed overnight. I was released the next day around 1'ish though could've gone earlier.... the resident forgot to put in the discharge orders that next morning and went into surgery!!! They called her out late morning to put those orders in thankfully! I had a 4 hour drive home - nope, I wasn't the one driving lol I had the massager things on my legs the whole time from recovery room until the surgeon came in the next morning. they also had me on a "fall risk" for reasons my surgeon did not understand or agree with. For those reasons I had to call someone every time I had to go to the bathroom to disconnect my legs and help me walk. I could take care of things in the bathroom myself though I wasn't graceful - drains, soreness, etc. I dressed myself the next morning and the surgeon and her resident couldn't believe how good I looked that next morning. They said I "didn't even look like a patient." I get weird feedback like that a lot - can be invalidating sometimes..... Anyways, get ideas on what stretching you can start soon after, no elbows above the shoulders for 6 weeks, no lifting over a gallon for 6 weeks, ask your surgeon if you can shower with drains - surgeons vary about that, listen to your body, etc. I did develop cording some weeks out that was unrelenting so keep an eye out for that.... if finally did go away with some lymphedema therapy treatment (even though I don't have lymphedema)..... Best to you!!!

  • WC3
    WC3 Member Posts: 658
    Options

    GalleySlave:

    I've heard same day release is not uncommon unless the person is having natural reconstruction. I was there two days just for monitoring as I was at higher risk of complications but things went fine.

    I did not have trouble toileting except for pulling my pants up in general with the drains in because the muscles in the vicinity were irritated.

  • Rubytoos
    Rubytoos Member Posts: 44
    Options

    I was able to drive to my follow up appointment 12 days later which was 4.5 hours each way. I don't recommend doing that :). But aside from the fatigue factor it was no big deal. BUT every person is different. My biggest advice is don't push it. I spent the night and recommend doing that--it is pretty much SOP. It is a fairly big surgery, pretty vascular area, and it averages 2-3 hours per breast depending upon whether nodes are involved, etc. I had general anesthesia--I was surprised at that, but I go to a research hospital and they know what they are doing. The outpatient facility had a lovely "sleep over" suite, not like a hospital at all. Even though you spend the night it is still outpatient if under 24 hours. I got great after care, two nurses. I was able to go to the toilet under my own steam. The one thing that gets old fast are the drains. But I got a Prody Drainage Bulb Holder II and am soooo glad I did. Latex free, designed by a nurse, better than "pockets", keeps them in place and promotes drainage. You can shower with it on (I was able to shower within 48 hours). It is basically an adjustable elastic band that goes around your waist with some proprietary attachments that hold up to four drains. You definitely do not want to be hoisting feed bags, stretching and reaching to care for your livestock. No repetitive movements, no waving your arms around overhead. I started doing PT exercises as soon as I got the drains out. The first couple of days I did appreciate getting some help with dressing and meals. But I could have managed if I had to. Accept the care that is being offered. You will probably be quite glad for it, and if not, that probably means you are well enough to manage without it. But you definitely want to arrange for some folks to help feed the critters. I spent a lot of time preparing for every possible need during that time and the recovery goes quite fast. I definitely over did it in terms of tops and stuff I got. The one thing people did not prepare me for, at all, never mentioned, is I have no feeling in my chest. I am still not clear whether this resolves or not. I hear different things. So be prepared for that. It is for me a rather weird feeling but I notice it less and less.

  • Messenger77
    Messenger77 Member Posts: 9
    Options

    Yes, when you wake up in recovery ask them “what the hell happened to my boobs!!??” I got quite the laugh when I did that. Good luck!

  • cyathea
    cyathea Member Posts: 334
    Options

    Hi Scaredbutstrong, I wish you a successful surgery. My BMX was in March 2020, a distant memory now. I was scared but strong as well. It wasn’t nearly as bad as I feared, and I hope your experience is even better than mine was.

    The surgery tips from BCO were very helpful. I echo that the larger than normal button-up shirts were very helpful.

    I was grateful that my Mom had given me one of her BMX bras with some fluffy inserts. You might want to buy something similar with a front closure before your surgery so that you have something to wear when you get fitted for your prosthetics (if you plan to use them). Due to some swelling and sensitivity, I was glad that the bra had multiple hook-and-eye closures and was larger than my pre-BMX bra size.

    While I returned to working on my computer at home after 6 days off, I wasn’t working at my normal level and I remember having to rest more than usual. I had some complications so it took me 6 weeks before I could work a regular 40+ hour schedule and didn’t feel so tired. I was glad that I had been cautioned that this is major surgery, so this didn’t catch me by surprise. If you are a Type A like I am, it’s good to keep this in mind and give yourself a break.😁

    I was a fairly healthy person before BC. I’m adjusting but I still miss my pre-BC life. I’m grateful to be living well (NED on my last scans). I don’t miss my breasts and seeing my scars in a mirror has been fine for me. (I worried unnecessarily that this would be hard because this IS hard for many women.) I say this not to imply that I’m stronger than others, but more to emphasize that this is truly an individual experience and that what I was worried about didn’t happen for me. Instead, I struggled more with fatigue, treatment side effects, and being frustrated with my lack of motivation to do things like I used to before BC. I’m still a “work in progress”, but I keep going. Whatever challenges you have with your experience, know that everyone here is supporting you and wishing you courage, strength, and love. (((Hugs)))

  • Seahawkterry
    Seahawkterry Member Posts: 1
    Options

    hardest part for me is the bending down. Got a grapping stick. Forgetting not to reach up so high. Those stitches will tell you to stop