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Mastectomy this week-what to expect

JulieVT11JulieVT11 Chermside, BrisbaneMember Posts: 74
edited November 2018 in Newly diagnosed
So booked for mastectomy this Wednesday and feeling very overwhelmed with what to expect.  What do I take to hospital, what do I do about bras etc then there is the day by day count down of losing a breast and the emotional whirlpool of how I will feel afterwards.  I have chosen to have reconstruction at a later date.  I have been on this forum since I was diagnosed 3 weeks ago and found it such a great space, just reading what women go through and come out the other side is truly inspirational and heart warming.



  • AfraserAfraser MelbourneMember Posts: 2,872
    It's all a bit of a muddle at first, isn't it? I had two days between confirmation of diagnosis and surgery, so wasn't very prepared at all. Didn't matter as the hospital looked after me well. The surgery itself is usually very straightforward, I was home in 4 days and very little pain. I was offered painkillers at every turn, but really didn't need them. I did manage to buy pyjamas, front opening is useful and without fiddly buttons, mine had a zip. Also had a hood with little ears but that's what happens when you buy things in a hurry!! Teabags or coffee bags are good as hospitals often can't get that quite right. Books, IPad, whatever you like to pass the time. I didn't get a free bra, I actually wore the same bra in and out, with a soft pad provided by the hospital. I had no problem, the bra did not sit on my scar line but apparently a soft bra is better. A phone call to your surgeon's office may clarify that. I didn't have reconstruction but it's an entirely personal decision and many women do. You can join the breast reconstruction group here when you are ready. Best wishes, it's a big step but in the right direction. 
  • kmakmkmakm MelbourneMember Posts: 7,871
    Hi Julie. Welcome. I was a lurker for ages before I joined in! Sorry you're here, but if you find it half as comforting as I do, then it's a good thing.

    Take some time to say goodbye to your breast. Sounds silly but a lot of us have found it helpful. Some have a party, some a quiet prayer of gratitude for their service, or take themselves to a place where they can take the girls out in nature and howl! I had a double mastectomy (and immediate DIEP reconstruction) and spent a lot of time in the preceding weeks 'memorising' what they felt like. I also got my husband to take some photos of the girls. I've not looked at them since they were taken but it's important to me to know I have a record of what was there before.

    There's normally little pain with a mastectomy. You tend to have more issues in the armpit area. Make sure you do the exercises they give you religiously. They really helped. I'm almost seven months down the line and have to do a particular set of stretches otherwise I lose range of movement. As with any amputation you can have phantom boob sensations. Phantom nipple is downright weird I can tell you! And then you can get very sharp and sometimes painful sensations as nerves grow and try to reconnect. This can go on for ages. I'm still getting them.

    Do you have a breast care nurse? Mine supplied me with the free Berlei bra. It's ugly as anything but I found it very comfortable. Ring your surgeon's office amd ask them if they supply it. Or the hospital. Or failing that, try the BCNA helpline on 1800 500 258.

    I had a lady pop into my hospital room and give me a bag of 'goodies', which included hand knitted drain bags, and most valuably, a Zonta cushion. This is a little cushion that you hook on your shoulder to position as you need to keep your arm off your body until the surgery site heals. It then becomes handy to put between a seatbelt and you.

    Take front opening sleepwear, unless you're happy to be in a hospital gown. You probably won't be in there too long. Though that can depend on your surgeon, and how quickly you don't need your drains. They like to see their output trickle down to almost nothing. Some people's do, some take weeks and they go home with them.

    Are you having an expander put in, or looking at a later DIEP? Have you joined the Choosing Breast Reconstruction group (scroll down and click on Groups)? There is some excellent advice over there.

    Good luck Julie. I hope it all goes very smoothly and let us know how you get on. Better an empty house than a bad tenant! Big hug, K xox

  • CaccalCaccal Member Posts: 12
    It is such an unknown so it hard for the mind not to wander! I had a double mastectomy and  sentinel node biopsy 27/10/18. I had expanders put in at the time for future reconstruction. The pain initially was manageable and dulled quickly. My breasts are now full of fluid which is the most uncomfortable part but again not painful just discomfort. I was thankful for my mums help to shower and get dressed the first few days and I had drains in for 2 weeks which look weird but again not painful. I was thankful for my electric tootbrush in hospital! Good luck on Wednesday and if you are able to have a friendly face waiting for you, that helps too xx
  • LIttleBlueWrenLIttleBlueWren BrisbaneMember Posts: 75
    Hi Julie
    I had a right mastectomy on the 24th October 2018 and had pretty much no pain although the drain site was a bit sore (I had two drains and they were left in when I went home). I had a thing that I could self administer morphine and I used it twice. I was in hospital for two nights. I did not have reconstruction as I am having radiation (start Monday). Reconstruction will be in twelve months time.

    The breast care nurses brought me a drain bag, a bean shaped pillow, a prosthetic (soft one) and a soft bra for me to keep. These were very useful and I really appreciated these items (and still use the pillow, prosthetic and bra), I would suggest finding out if they are supplied or packing them if possible.

    I think lip balm, moisturiser and tissues are essentials. Also a lightweight book (or kobo) and relevant chargers and I second the suggestion for your favourite tea or coffee.  I also took my own large travel mug and water bottle as for some reason the tea cups and water glasses seem to be the size of a shot glass :):smile:

    The thought of losing a breast had me very upset and even wondering what would happen if I did nothing, I cried a lot! Weirdly, post op I seem to be more comfortable with it all and have even wished that I had both removed so I am not lopsided (not sure I could actually do that, but these are the thoughts I have).  This is really not how I expected to feel, don't get me wrong I still feel sad about it and get upset if I think too hard about it, but I try to remind myself that the cancer is now gone and I am one step closer to finishing 'active treatment'.

    Best wishes for Wednesday, I will definitely send positive thoughts your way.

  • Rose18Rose18 Member Posts: 87
    @JulieSav all the best with your surgery. I was just thinking back to my surgery 4 years ago. I think the nurse told me there would be a day where I felt really flat around the 3rd day after surgery from memory. Then I started to feel better. I took my own pillow in and turned the little side cupboard around to face the bed more so that I didn’t have to reach around as much. It wasn’t as painful as I expected, although the drains can be annoying/ painful, especially in the shower. We are thinking of you and just know it will get better. 
  • TonyaMTonyaM Member Posts: 2,643
    Hi Julie, so sorry you have to go through this crappy journey
    I had a left mastectomy 8 yrs ago.Initially,I just wanted the cancer and breast gone ASAP. I’d had a lumpectomy and radiationon on the same Breast 7yrs before and so my recon options were limited.
    When I first looked at my scar, I was high on painkillers and it didn’t look so bad.The drain was in for about a week and that was a real pain in many ways. I was in hospital for 3 days and the pain wasn’t too bad. You are quite numb across the chest- still am. I had a large binder around my chest and so I didn’t wear a bra for a few weeks. I found a singlet more comfortable to start with.Make sure you have a loose,button up shirt to wear home from hospital.It will hide being lopsided.It’s a big adjustment on many levels but you get used to it. I got fitted with a proper prosthesis 6wks post op and I felt more confident after that.You are kinda in battle mode getting through surgery and it’s later on that ‘mastectomy issues’ may surface.I didn’t do any farewell boob parties etc but I do wish I’d taken a photo of them as I now can’t remember We are here to chat any time about it. Best wishes for your surgery and a speedy recovery. Tonya xx
  • SisterSister Adelaide Hills, SAMember Posts: 4,528
    @JulieSav You've had a lot of good advice here.  I would add my voice to having a photo taken beforehand.  I didn't before I went in for the wide excision and wished I had, but did before I had the mastectomy.  You can always delete it later if you decide that it makes you feel uncomfortable.  

    Going in to hospital - take some face wipes because it's easier than washing your face every 20 minutes (always feel so greasy in hospital).  If your hospital has a garden, take some footwear that you can slip on over TEDs and a reasonable robe - my surgeon was very happy for me to take the lift down and wander through the hospital garden rather than do laps of the corridors and it's so much better for your state of mind to get some fresh air.  I also took some drinks that I prefer rather than drink hospital tea/coffee/cordial all of the time.  Another thing that can be useful is a shawl or pashmina as the airconditioning can get quite chilly in hospital.

    I was given one of the Berlei Brunnhilde bras which I have to say that I found dreadfully uncomfortable and a bit upsetting as I'd never worn anything that looked so much like a "foundation garment".  You don't say where you are but I also had someone come in to the hospital who fitted and sold bras (I still get bras from her as it is such a great service).  You may find that for the early days, a pull-on crop bra with a soft-form is all you want - about $15 for two from Kmart of Best and Less.  I actually went braless as much as possible in those first weeks.  And try to have a couple of comfortable front-opening tops for when you get home.  It's quite possible to get stuck trying to get clothing over your head as your movement can be limited (I speak from experience as my poor teenage son had to come to my rescue when I couldn't get a t-shirt off).

    Believe it or not, you will get through the surgery and out the other side.  Bits of it can be challenging but for most of us it has been a relief to get the cancer out.  All the best for Wednesday.
  • kitkatbkitkatb Member Posts: 442
    @JulieSav good luck with everything on Wednesday.  I am just over 5 weeks post op for single Mastectomy no recon.  I think the others have touched on everything.  Definitely agree with Sister to take some wipes with you.  I also took a few little healthy snacks as well.  Also agree with the others about button down PJ's and shirts or a really loose cotton t shirt a few sizes too big.  I had a drain in for 2 weeks and I found that was a bit of a pain, was always worried I would catch it on the bed or chair etc.  I still don't wear a bra but will slowly start to do that. I have just received my knitted knockers as others I had spoken with here in the tropics say that the prosthesis can be really uncomfortable in hot weather.   
    I found the surgery itself was not as bad or painful as I thought it would be.  I don't miss my boob, it was a relief to have the cancer gone.  You will be fine.  hugs   xox
  • ~Millie~~Millie~ Member Posts: 61
    @JulieSav best wishes for your op. The only thing I have to add is take some noise cancelling earphones if you have some. There was too much machine noise for me. I ended up playing the TV on a music channel to get some sleep. But some headphones and my own music would have been much better. Hospital coffee was also an issue for me. In the end I texted my visitors, bring coffee, not flowers 😆. Xx
  • Trikki2Trikki2 Member Posts: 284
    How are you, since your mastectomy xxxxx
    Thinking of you 
  • JulieVT11JulieVT11 Chermside, BrisbaneMember Posts: 74
    @Trikki2 feeling pretty good.  Drain out today thank goodness and excellent results, no radiation or chemo just anti-hormone treatment.  So very relieved it was caught early now I’m mentally exhausted.  thanksJ
  • Trikki2Trikki2 Member Posts: 284
    @JulieSav thats wonderful news. Yes it is mentally draining. I get my results next week. Xxxxx rest up
  • JulieVT11JulieVT11 Chermside, BrisbaneMember Posts: 74
    @Trikki2 thanks so much, good luck for your results also hope its good news

  • kmakmkmakm MelbourneMember Posts: 7,871
    That's so good to hear Julie. Hurrah!! K xox
  • CaccalCaccal Member Posts: 12
    Thats the best news ever. 
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