Pre mastectomy tips please

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CathL
CathL Member Posts: 7
I’m a couple of weeks away from having a mastectomy on my left breast. Does anyone have any tips to prepare me that they wish someone had told them before surgery? E.g things to have ready at home for recovery, any necessary items I may need to make recovery a bit easier? Any tips are welcome, thank you 
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  • Afraser
    Afraser Member Posts: 4,390
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    For most, a mastectomy is pretty straightforward, especially if no lymph nodes are involved. You will have drains which can be a thorough nuisance, easy to trip over so the solution is bags to put them in and to sling over your shoulder or, as I did, use deep dressing gown pockets. 

    You’ll be given an exercise list. It’s really worthwhile doing these, religiously. I did and had normal mobility in my arm in a matter of days. The difficulty in getting full mobility depends in part on the precise nature of your surgery but the exercises really do help. 

    I didn’t have reconstruction but others can advise. Oh and I really didn’t have any pain. My hospital was deeply wedded to pain relief, but it simply wasn’t necessary, I ended up
    squirrelling away painkillers until the staff accepted that I was genuinely fine. I’m no stoic!! But I appreciated the concern. 

    Front opening pyjamas are helpful. Take your own tea or coffee if you are discriminating. My hospital served excellent meals but dinner was at 5 pm!! Books, phone, music - there’s time to fill.

    I got a soft pad to wear in my (normal) bra before I left hospital. It was important to
    me to leave looking much as I had on arrival! I didn’t need any change of bra because my surgical wound didn’t have any impact from my bra but a soft bra may be recommended.

    My drains were removed before I left hospital but sometimes they are not and you will need to know the procedure for later removal. 

    Best wishes. 
  • Fufan
    Fufan Member Posts: 123
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    Welcome, @CathL.  Usually, you will leave hospital with a drain.  I had a nurse visit at home every few days to measure the “output” and finally remove the drain.  I think that’s normal procedure.  I was gifted a drain bag, and made myself a net one to wear in the shower.  Like @Afraser, I experienced little pain.  Do buy some post-op bras: I liked the ones from KMart, which zip up the front.  If you can squirrel away some meals in the freezer in advance, that would be good.  Above all, be kind to yourself and accept any help offered.   Best wishes.
  • Blossom1961
    Blossom1961 Member Posts: 2,411
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    @CathL  I know this may sound like commonsense to some. I didn’t realise they were going to draw all over my boob before the mastectomy. Everyone left the pre-op except for one woman who started ordering me to lift my arm, move this way, etc as she was drawing big marks all over my boob. It suddenly made everything horrific. At no time did this woman talk to me except to order me what position to be in. It was very clinical. If I was prepared I would have handled it better. After the operation, I felt virtually no pain.
  • iserbrown
    iserbrown Member Posts: 5,576
    edited August 2023
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    https://www.zontadistrict23.org.au/what-we-do/service-projects/zonta-breast-care-cushions/

    I was provided with a Zonta gift pack in hospital by my breast care nurse.  A bag for xrays, a bag for the drain and a breast cushion.  Cushion was a great help for the car trip home.

    In the hospital I would have a large scarf around my shoulders/chest to hide my drain bag as I would go for a walk around the ward.

    Link above for you to enquire if they're not available in the hospital setting.

    My hospital stay was until the drain was to come out.  Mastectomy was fine, armpit took time to settle.  

    Also, Knitted Knockers to be considered if you're staying flat

    https://www.knittedknockers.org/

    Best wishes @CathL
  • arpie
    arpie Member Posts: 7,733
    edited August 2023
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    @CathL ... definitely cooking up some meals and freezing them is a good start .... less to worry about when you are home.   Line someone up for doing your clothes washing & cleaning, mowing & gardening, as you won't be doing any heavy lifting for a little while (includes lifting pets & grand kids ...)   Stock up on movie DVDs or binge watch Netflix, etc .... sometimes it is just easy to lay in the lounge & veg out .... as you can feel quite tired & lethargic after a general anaesthetic .... if you love puzzle books, get some in stock! ;) 

    Here's the Reclaim your Curves link re what to take to hospital, & other topics like considering reconstruction etc (just download the ones you'd like to keep & read.)

    https://www.reclaimyourcurves.org.au/information-sheets.html

    And also consider listening to Charlotte Tottman's podcasts - they are terrific. She is a psychologist who's undergone a double mastectomy - and her podcasts are just so easy to listen to, with little nuggets of wisdom throughout, as she totally 'gets it' - as she's been thru it herself.  Start with Season 1 .... 

    https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/

    Just wondering - have you considered taking some 'before' and 'after' pics, for your own record?  It sounds sort of 'weird' - but my brother actually suggested it for me the day before my surgery and I did it - I just took some myself with my phone. ... but Charlotte Tottman had a professional take some pics (B&W) and was really pleased that she had. ;) 

    If you have any queries, feel free to chat with our helpline too on 1800 500 258 (Mon-Fri) and they will also be able to help you.

    take care & all the best xx. Keep busy in the mean time, doing things you love doing .... as your mind will be going round in circles ..... this diagnosis mucks with your brain even more than you body xx
  • Julez1958
    Julez1958 Member Posts: 1,156
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    Hi @CathL
    No one told me about the drains!
    I had a breast care nurse assigned to me but she never contacted me before the operation and I first saw her the day after surgery.
    At that stage I was in a lot of pain and throwing up as a result of the anaesthetic and I gave her both barrels!
    Anyway , the recovery for  me took time and I had to take Endone for a number of weeks.The breast care nurse said “ everyone is different”.
    Anyway I wasn’t prepared for the pain and how long it lasted (6 weeks).
    But 3 years on it’s a distant memory.
    Also there will be an emotional response - even though I was 62 and my “ girls” were quite droopy I did have an emotional response to the loss .
    Seek counselling if you need it for that - I had a couple of sessions that I found helpful .
    Take care 🌺
  • Fufan
    Fufan Member Posts: 123
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    I, too, have found knitted knockers very useful (especially under winter clothes, I don’t bother with the full-on bra and prosthesis thing).  A funny thing though: they arrive in the post with KNITTED KNOCKERS plastered all over the envelope!  Hope you are ok with your post office staff, and local gossip, because this no doubt worthy service is certainly not discreet!
  • Abbydog
    Abbydog Member Posts: 483
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    I had a Right Mastectomy with Axillary clearance. I had 3 wound drains. They all came out prior to discharge from hospital. I stayed in hospital 6 nights, in a private hospital. The wound drains are annoying to get around with. My hospital provided a bag with a long strap to put over the shoulder or head.  A shopping bag or pillowcase will do.
    The other annoying thing was keeping all of my wound site dry, as was my surgeons preference. That was until 2 week post op checkup. Luckily I have a shower with a hand piece, so I could shower lower parts carefully. Front opening PJ's were ideal for me.
    I had no difficulties with my range of motion, of my arm. You will be given exercises, and should do them. My level of pain was very manageable, but everyone is different. Hopefully you will have some choices. Usually regular Paracetamol is recommended and stronger stuff as needed. You will probably need to ask for these, and will probably need some. I had and have some areas of numbness or abnormal sensation in my upper arm and side of chest. I still have this, to a lesser degree 3 years later. I don't know if the happens, if you do not have axillary clearance.
    The other thing that may happen is a seroma (a collection of serous fluid) which may need draining after hospital discharge. 
    I recommend taking your own pillow. If you go to the room you will stay in Post Op, take the time to put things near you that you may want. Perhaps chargers, notepad and pen, book etc. Toiletries and fresh undies in the second draw or just be familiar where they are. If you go to your room only post op, maybe a relative or friend could do this for you. 
    I don't know if everyone gets their first mastectomy bra and soft prosthesis in hospital, but I was given this before discharge from hospital. Provided by a charity, but I cannot remember who.
    You could make some soups or meals to freeze for after surgery. Accept any offers of help. 
    All the best. I hope it goes well for you.
  • iserbrown
    iserbrown Member Posts: 5,576
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    https://www.berlei.com.au/bcna

    The free bra
    I was fitted in Hospital 
  • Julesuptree
    Julesuptree Member Posts: 5
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    I'm a bit late to this conversation, but I had a left mastectomy with full axillary clearance and opted for no reconstruction and yes the drains were a bit of a shock at just how far they went in once they were being removed! Knitted knockers are good and as a knitter myself, gave me something to do in hospital plus I used up some brightly coloured wool. the free barlei bra was great but as I'm quite tiny, the Kmart post -surgery bras ( super cheap and easy to put on) are my faves. I just swap the right side pad to the left and hey-presto. I hope you are recovering well. x