About to go into hospital for Bilateral Mastecomy, what can I expect? What can I tell my children? 10 hour operation, how will I feel?

[cookiemonstress]

Hi
I'm shortly about to go into hospital for a risk reducing bilateral mastecomy with reconstruction (DIEP Flap). It's a 10 hour op and will be performed at St Thomas'.

Wondering if anyone has experience of this op? Would be useful to have some anecdotal experience of what I can expect, what's a realistic recovery time, what can I expect to feel like after 10 hour op.

Also does anyone have any advice as to what to tell my girls (3 and 4) and how to prepare them?

I am getting support from Breast Nurse but haven't spoken to anyone directly about it, so a bit of info from the 'horses mouth' would be v useful.

Thanks!

Hi Cookie

I was totally out of it for about 2 days, I came round in intensive care and was high as a kite. Didn't feel pain just totally out of it.

Went to plastics ward afterwards and found that really hard as had some awful nurses and even had to report one. It's weird not being able to do anything (brushing my teeth was about it) and having nurses unwilling to help. I was glad to get home.

I think we have the same breast surgeon, Dr Hameed?

Are you losing your nipples? I lost mine too, very strange look. I have one breast that's quite high and firm and the other one is near my knees.

I'm OK now and on the waiting list to get my other breast lifted and some lypo on the reconstruction as it's an odd shape. My stomach scar is right across my stomach. You'll be shocked to see your new belly button as they have to move it!

I found the breast cancer care website really useful, you'll find loads of people going through the same thing and the leaflets they send you (free) are informative.

Another tip, don't do what I did and comfort eat after because you'll ruin your new flat stomach!

xx

Hi
I'm v glad you are ok. You must have been through some tough times.

Yes, we do have Dr Hameed. Mr Fahardi is the polar opposite of Dr Hameed so I feel like I'm dealing with a double act at times.

Yes, I am loosing my nipples . I would like to have kept them (as you do) but I was bluntly told that my breasts are currently too big (i'll be going from FF to b/c cup apparently). I am not looking forward to the initial unveiling I have to say. Will you be getting a nipple done later?

I am a bit sad about my belly button I confess, i just hope they get it central. Sorry to ask but did you find your bikini line moves upward? I imagine it must?

Thanks for breast cancer care website, I've spoken to them but not give the site a good going over.

I will bear in mind the tip re: comfort eating! At the moment, I'm trying to eat for england in the hope of creating a bit more tissue for a slightly bigger boob. The irony is that it goes straight to my boobs first and my stomach last!

Thanks again for the time you've spent replying to me, it's a big help.

Best wishes
xxxx

Hi

Yes I should be getting a nipple but not sure when.

My bikini line has moved upwards and the scar is a lot higher than that. I haven't got much feeling on my stomach, weird at first then you get used to it.

I did the same as you and ate for England and they did take it all away so don't worry you will wake up with a flat stomach.

x

Hi Cookie, I'm not usually a netmums user but I came across your post while trawling the web for lists of things to take to hospital. I, too am having a Diep at St Thomas's on 26th January and my sister just had hers on 8th and she came home today (amazingly they were prepared to allow her home yesterday, 3.5 days post-op:-o)

My mum died of BC aged 59, 17yrs ago and one of my sisters (there are 4 of us)was diagnosed in 2009 aged 45-she is doing fine and is "all clear following bilateral LD flap surgery. Myself and my eldest sister Sharon tested positive for BRCA2 mutation last march and went straight on the waiting list. I am a 32FF and Mr Farhadi says he will try and graft my nipples back on (just the skin after removing all the risky tissue). I also have Mr Hamed for my mastectomy.
We both are registered users on the fantastic BRCA website-please come and join us !
brcaumbrella.ning.com/
I am on there under my real name (Vanessa), you will see I have posted some recent updates about my sister. When is your surgery?