Post double mastectomy advice please!

Hi NicW  

I had the same operation (a double mastectomy without reconstruction + sentinel node removal) in July 2020. I was nervous but in retrospect should not have been. I stayed in overnight because I was reluctant to rely on just paracetamol but I think I would have been ok if I had gone home. Firstly I would say a front buttoning loose blouse, I was advised a pattern one. I actually bought from M & S a loose cotton wide multi-coloured downward striped blouse. I seem to recall having dressings and although I was given softies by my breast care nurse wearing a bra straight afterwards wasn't an option. I didn't bother wearing any bra for some time. But before you get your proper prosthesis I would recommend a soft bra no wires and one that does up at the front. When you are sufficiently healed you will get a prosthesis fitting and be given a bra along with your prosthesis. I only wear mine for special occasions and mostly now I use knitted knockers as they are so light. I wear prostheses for swimming, you have to buy these ones yourself. YOu will probably be given a small heart-shaped pillow to help with the seat belt when going home and this is also good for when you are in bed. A few tips. You will be given exercises I thoroughly recommend you do these daily. I did most of mine in bed, a good excuse for extra time there. I just about have my full stretch back ie I can access the top shelves in my kitchen. I didn't need drains, I hope you don't either. Massage your wound, ask the physio or one of the breast care nurses or look for an online video. There are various creams you can use and some of the wound/scar healing strips might also help. I mainly used bio oil but must admit that my scar is pretty visible. You have to lie on your back and need plenty of pillows to prop you up. I had lymph nodes taken from only one side. I did some lymphatic drainage on the arm although my surgeon was pretty certain I wouldn't get lymphodema and she was right but I did do some massaging to make sure and I did wear an elastic sleeve but not for long. When I have injections/vaccinations I have them in the other arm.  You will probably get bits of shooting pain in the scar area but this for me at least wasn't too bad, it is the nerves knitting back together. 

Most important is to take a good book in so you can enjoy some time. 

It can take a bit of time to get used to the new you. I had size 40 HH breasts, losing them was less obvious than I thought it would be. I initially wore lots of silk scarves to hide my flat chestiness but to be honest no one seems to notice and I think the loss of weight has been good for my back. I am, however, in my 70s and might well have felt different if it had all happened in my younger days. The main thing is do the exercises.  xxxxxxx

Lie on your back when sleeping (for about 6 weeks)

Hi NicW,

I had a double mastectomy 5 days ago with removal of one lymph node. I was well prepared and had bought everything I thought I might need but found a lot of it wasn't necessary.

I suppose everyone is different but I haven't needed to use the pillow I bought to sleep with ( a large M shaped one to go on my chest with dips to keep my arms away from my side) 

I found I was able to raise both arms pretty well straight after surgery but have button down tops to help getting dressed. 

The hospital gave me some softies but I needed to supply the bras so I bought a few front fastening bras - I'm glad I got a couple as one of them is a bit high on the side and rubs the wound.

I was a very large cup size before (36K) and have decide to go much smaller as I have a fairly small frame - the world is your oyster - just see what size suits you.

I did buy a seatbelt cushion and this really gave me peace of mind when travelling home the next day. 

I have to say the whole process has been a hundred times easier than I feared it would be, I have managed with just Paracetamol and Ibuprofen which I now haven't taken for 24 hours. It is a bit sore and feels bruised (I am starting to be all shades of green and blue) but for me it has been so manageable. I was in the kitchen cooking for a few hours yesterday - trying to remind myself to rest more as this is so important.

The only thing I have found a little difficult is having drains either side. You have to keep reminding yourself they are there so you don't get tangled in them. I am hoping to have them removed tomorrow (would have been yesterday but it was the weekend)

All in all it hasn't been the horror I was dreading and it is now just waiting for the appointment with the surgeon to find out if they got clear margins and to see the results of the lymph node removal.

Good luck to you and please feel free to message if there is anything else you want to know x

Thank you...appreciate the advice. It's really heartening to hear people saying it hasn't been as bad as they had feared, as I am very anxious about it all at the mo x

Thank you so much for your advice and it has made me feel loads better. My head has gone into overdrive and I'm feeling very anxious about everything. I have ordered a couple of different sizes of front fastening bra (my usual cup size and a smaller cup size) but think I will go ahead and get a seatbelt cover. I'd also looked at the M shaped cushions, but might now give that a miss. It's been really helpful reading how most people have found the op and recovery easier than they thought it would be.

Good luck with your appointment xxx