Recommendations for mastectomy recovery

Hi, I have been diagnosed with a 60mm lobular breast cancer, due to its size I have to have a masectomy. I can't have a reconstruction at the same time as have to have radiotherapy first. I haven't quite got my head around this yet, I'm only 36 and can't imagine such a big change to my body but anyway, I was wondering if anyone that has had a masectomy could recommend anything for the recovery, I'm thinking like pillows/cushions for bed or sofa, or I've read seatbelt cushions are handy for the car? I just want to be as comfortable as possible!
Also how long were you in hospital for and how long was your recovery at home? I think my husband is concerned I'll want to be up and about straight away when he knows I'll need to rest.

thanks x

  • Hi jjchoccy,  I had breast surgery last week - lumpectomy and sentinel node removal so someone else might have better advise about a mastectomy - but a couple of things you might find useful. Slip on shoes and a top you can step into and pull up over your hips or a front fastening top/cardigan for the hospital I found easier.

    An L-shaped cushion has been good for sleeping and water and painkillers within easy reach at night though I have been sleeping well. 

    I was up and about the day after surgery and have been able to sit and watch TV and eat meals with my child to maintain some normality. I've also been able to go for shortish walks fine. More tired than usual but not too bad. Best wishes for a speedy recovery xx

     

  • Jj 

    I had lumpectomy last July but 2 nd operation was full lymph node removal 30 nodes with this I had a drain for10 days which was slightly annoying but not painful I found wearing dresses on top of the drain was easier than tops and trousers I wore loose dresses and the drain was hidden 

    you will suprise yourself and be out and about in no time 

    as case 4 said water water water and pain killers through the night 

    good luck love Lara 

  • Hi I had a mastectomy on13/2/23 it is quite painful but with regular painkillers manageable so don't be scared.

    The first week after surgery is the hardest as you come out with a chest drain which is also manageable once you get used to it but makes everything a bit harder to deal with. I would say pain, sleep everything is difficult whilst attached to the drain and nothing feels that easy until you have that removed usually after seven days, this is very straightforward and the relief you feel at having it gone makes you able to start doing more although you will still feel exhausted at times you will feel elated to be free of the drain. You don't need any special cushions, pillows etc, just a comfy bed with pillows try to sleep propped up whilst you have your drain as it's more comfortable and if you have a bedside table close to your bed you can prop your drain on it before you get into bed then prop yourself up it's the easiest way round this. Sleep wasn't easy for me but I did get some. During the day try to rest up especially the first two weeks as it really is when you're most tired. A nice comfy sofa with blankets for warmth and cosiness. Make sure the remote is near, drinks at the ready or a good book! You are not lazy you need all the rest to recover as you have just had major surgery! Be brave recovery will come ! Washing is a bit of a chore but can be achieved slowly and carefully. I managed on strip washes and washing my hair over a sink for the first two weeks, tricky but doable! Tried the shower but just too difficult to manage without nearly soaking my dressings so stuck with the strip washes which kept me fresh until week 2 when I could remove my dressings. Trust me the day this happens is fantastic as you can get back to your showers or baths whichever you prefer! It's really scary to go in at first but once the initial spray hits you all fear goes out the window and it feels like heaven just to have normal. Pat dry very gently and what I found helped the healing process even more was once dry, rub in daily savlon cream as it really helps by three weeks after surgery I had a very tidy healed scar line no scabs left all clear. By 4 weeks you feel more you minus obviously your breast! I hope this helps you as it's all a bit overwhelming whilst you are going through all this but you will get through this and will be amazed just how quick it goes. You are strong, brave go get this done and get your life back!!! Best of luck for your surgery and if you need any advice at all through the process please feel free to ask and I am more than happy to help! Take care and a very speedy recovery wished for you xxx

    ps forgot to say, no matter how hard and tricky do the exercises you are given and do them daily this will really help your arm feel normal again quickly x

  • That's helpful re the clothes, I will sort out some things I don't have to pull over my head. Thank you! 

  • Thank you so much for the in depth reply, this is exactly the kind of stuff I like to know before hand so I can prepare myself!

    I didn't really think about drains and not being able to shower, I love a shower but I know my husband will help me with hair washes at least.  
     

    I'm glad your scar has healed so nicely, I will definitely try any cream that helps! How are you mentally coping with one less breast? Do you use bra inserts? 

  • Thanks Lara, did you have the full node removal as they found traces in the ones they biopsied from the first surgery? Did that mean you needed chemo?

    I'll dread having to go back in for more surgery and more treatment after the first lot xx

  • Always happy to help. Forgot to say I went in early morning and came home about 5.30pm same day. I have managed to wash my hair over the sink quite effectively, you will manage ways round every thing but have help if offered. You are allowed to shower after 48 hrs but it was just to difficult to not get my dressings wet so strip washes were easier. My scar healed beautifully with the savlon but only when your dressings are off. Unfortunately for me my margins were not clear so had to have more surgery and have to go through the healing process all over again! I had my second op on the 20/3 so I am just coming upto my second week where I will be able to remove my dressings again and start showering and the savlon again to heal all over. Been a lot easier second time round as I know what to expect. For me, losing my breast is very hard to deal with, not sure I can live with the new me. Hoping for reconstruction at a later date but will get a prosthetic to keep me going until reconstruction as I feel quite paranoid about people guessing by sight. They will offer you lots of options at your clinic and after my mastectomy they gave me a thing called a softie to wear in the meantime but mine was too big so I visited M&S and they have a post operative section in there underwear department and they do better breast size fillers to wear before a prosthetic fitting. They also take of the vat charge if your having surgery of this type. They sell the post op bras also. They were very kind in my local store, made a difficult shop a bit easier to deal with.

    I really wish you all the luck with your upcoming operation,  have you got a date? you will be fine and get through it. Everyone is different how they feel emotionally about the loss so only you will know how you feel when you first see the new you and then you can deal with that. This is very personal to you. 

    Take care and please feel free to ask me if you need any more tips or advice and massive good luck xxx

  • Hi 

    A week today I had mastectomy lymph node removal came home the same night after operation with 2 drain bags connected although not very comfortable putchase a Dolly bag to carry the drain bags which was a big help  I also got a V shaped pillow which I found excellent because it helps me to sleep with pillows propped up behind me so it keeps me on my back also I bought a cushion off ETSY it's a long cushion with a place for you to relax your arms on so it covers the front of your chest this has been excellent .

    I did get a seat belt cover but to be honest I have not been in the car since coming home from hospital so not sure about that.

    one week on after operation just taking parecetamol and neurofen had drains out today and I would say this is my worst day the drains did not hurt to come out but just feel sore and pulling on chest but I'm lying propped up in settee with my V pillow .

    best of luck but it's not as bad as I thought it would be just rest

    x

     

     

     

  • Oh that's reassuring, I'd love to be home on the same day!! 
    Sorry to hear you had to have more surgery, what a trooper you are.
    What do they mean by margins? I presumed with a masectomy there would no more to take away? I know a second op may be needed if they need to remove lymph nodes but didn't realise there could be a second op for the breast tissue. 
     

    I will definitely be using whatever inserts or prosthetics available, very much struggling with the idea of having nothing there.

    I am seeing my consultant on Tuesday 4th for the treatment plan so I'm roughly guessing the surgery may be end of April time. Thanks again for the replies, you have been so helpful and I wish you a speedy recovery 
     

  • Well done for getting through the first week! 
    Another comment for being home on the same day, that's cheered me up as I was dreading having to stay in hospital.
    Not looking forward to drains, bet you are glad they are out now.
    Do they not give you anything to support the drains? How long are they, I have a vision of them hanging down pulling on the wound.

    Have purchased some oversized zip up and button up tops, and also a batwing pillow to help prop me up.

    Thank you so much, wishing you a speedy recovery xx