Mastectomy and reconstruction at the same time

Standard PJs should be fine - you may well be given a drain bag and heart shaped cushion made by volunteers by the breast care team and they will advise you about what you need - I’d save your pennies for bras but wait and see what they advise. I couldn’t have an immediate reconstruction so I can’t advise on timescales but it does take a while to recover from a mastectomy - I was told no vacuuming/lifting/ironing for six weeks so it might be worth having a think about who might be able to help if you’re a full time carer - I prepped and froze meals in advance and sorted grocery deliveries in advance.  Also it’s worth mentioning that shoes and socks can be tricky - I lived in my crocs/flip flops as it was summer but reaching my feet was hard. But I was more capable than I expected quite quickly in terms of being able to use my arm.  I hope it goes well for you. 

Hello - you don’t mention the type of reconstruction ?  Recovery will be different depending on what you have - I may be able to help xx

Hello, I'm due to have a mastectomy and reconstruction, I was told by the macmillian nurse that I will just stay in hospital over night on the day of the operation 

1. I'm due to have a mastectomy with reconstruction, I will just stay in over night 

Hi!

Sorry to hear that you're in this situation. I have a mascetomy on the right side 4 and half weeks ago. They also put in a silicone implant the same day. They removed 1 lymph node also. Came back clear. I was in hospital for one night. 

I wasnt in pain afterwards, had painkillers but never felt pain. I couldnt raise my hand very high for a bit after so I  would advise you to think about your home, anything you will need from cupboards where you'd need to reach up should be reorganised / placed at waist height. I felt good but certain movements weren't possible - opening doors, lifting anything heavier than a 1L Bottle, any kind of movement that involves pulling something toward you. Shoes and socks are difficult to manage for about a week after. Showering can be challenging so wet wipes are a good idea to have on hand. I took normal button down pj's to the hospital but didn't even use them. I slept in the hospital gown. Take comfy clothes for going home and slip on shoes if you have some. I have to say, the heart shaped pillow absolutely saved me. It was definitely the best thing I got as it can be hard to get comfortable.

I hope you're doing ok emotionally and I wish you the very best of luck. ️

Thank you so much to everyone for replying. I have never been on a forum site on anything before but it does help to hear other people's experiences.  I am doing OK and trying to keep strong - I am more emotionally challenged around my worry about caring for my husband when I return.  His dementia is challenging and I just hope that I am emotionally and physically to do the caring.  He doesn't remember about my diagnosis or understand that I have to go into hospital and I so miss someone to just give me a hug.  The challenges of dementia can be so hard.  People keep telling me that I need to look after myself but that is easier said than done.

I am meeting the consultant on Thursday when no doubt I will learn about what type of reconstruction is recommended for me but staying in hospital for one night only is reassuring.  I was concerned about a longer stay.   I am also having a sentinel node biopsy but they do not anticipate any spread of the cancer which is also reassuring.  Thank goodness for regular breast screening.  

Thank you all again for being so supportive and I hope your cancer journeys are going as well as possible.  What a wonderful group of people you are.

So sorry for being so late replying but I was waiting until I met with my consultant which I did yesterday.  I am having the DIEP flap reconstruction with skin sparing mastectomy.    It is quite daunting to know the operation is so long but I am determined to remain positive and do everything I can to get as fit as I possibly can be before my operation.  I just need to get my support plan in place so my husband (with dementia) is cared for, thank goodness for a caring and supportive family!  That's where my main worry lies, as well as ensuring my 96 year old dad is cared for too.  This is the first time I have ever had to go into hospital - I have always been so fit and healthy but I suppose it catches up with us all eventually.  

Thank you for taking the time to reply to my post, it is much appreciated.

Hi

I had a mastectomy and immediate recon by DIEP a few years ago. It is a long operation and you will be in hospital for  around 3-4 days afterwards. Once home you will need help to begin with - getting out of bed, dressing, having a shower etc even picking things up from the floor! You be tired for a while as it is a big op and you also have little sleep in hospital due to observations - every hour for first 24 hours then every 2 hours for next etc hence you need to monitored for 72 hours before discharge. My drains were out prior to leaving hospital. You won't be gadding about in hospital much - in fact more of a shuffle for a few weeks. I was unable to straighten up for a few weeks.  You are unable to raise the arm on affected side for 6 weeks also no repetitive motion on either side for same period ie ironing or vacuuming or even shaking a duvet. You dont need to buy much - loose clothing - easy to take on and off - I used couple of my husbands casual shirts and leggings. In hospital I used their gowns.I took some loose clothing into hospital but didn't use anything until dressed to go home. Take in a dressing gown and some slip on slippers to shuffle around - I used my crocs. (even to come home as doing anything else was too much!!!) At home an old PJ top with buttons for bed. You will need a front fastening support bra - they put it on you during surgery and once home a good pair of support knickers - really help with abdominal wound. I wore both 24/7 for 6 weeks. (put knickers under support ones to help on washing)  My DEIP was my fist time in hospital let alone any op - I was terrified to say the least. Although it's a huge op and recovery is slow, the results are amazing. I have had tweaks via lipo and refill and nipple recon etc afterwards. Very pleased with all and if you didn't know it's difficult to tell unless close and personal. Good luck. I hope all goes well. I hope this helps a little - any questions please ask more than happy to share my experience as I know from experience its all very daunting.XXxxxx

Hi, thanks so much for your note which was so helpful.  It probably has made me realise just how I might be feeling post operation and the level of support I will need.  I have always thought of myself as being very positive and upbeat - in fact my sister-in-law told me recently that I was the strongest person she knows.  BUT ..... sometimes it is a mask I put on and, as you say, this is all so very daunting.  Like you, I have never had anything wrong with me and have certainly never been into hospital so that terrifies me a little - it's the fear of the unknown and not being in control.  I am also so independent but I know that I am going to have let go a little and others help me.  I worry more about my husband and how he will be cared for - dementia is such a cruel disease and he has early onset dementia and it's not as if he can make me a cup of tea in the morning.  

How was your appetite in the first few weeks after the operation, and did you have much swelling or bloating?  I have been reading that this is sometimes a real issue for people.   Also, how long was it before you were able to drive?

You mentioned that you found it difficult to get out of bed in the morning - was that because of the level of pain and did you have to get out of bed on the side of your 'good' breast?  I am just trying to get a sense if I will be able to get out of bed on my own as my husband will be unable to help me.  I know we are all very different but it does help to have an idea of how things will be.  

Gosh, being woken up every hour to have observations done - I can't say I'm looking forward to that!  How did you find sleeping when you got home - presumably you are told to sleep on your back for quite a while?  Sorry for all the questions - I hope you don't mind but it is so lovely to 'chat' to someone who has had the same operation and therefore understands how I'm feeling.

Thanks also for the positive comments at the end - that makes me realise that it will all be worth it and I am just going to have to be patient in terms of my recovery.

Thanks again for being so kind and taking the trouble to get in touch.  xx

Hi

Yes, all the observations 24/7 are not great - they have to check the blood flow to your new boob etc. Although they do try to it as quickly as possible there is always a couple of anxious minutes until they hear the blood flowing nicely. I was exhausted by the time I came home but some of that was the pre op stress and the anaesthetic coming out of my system. (It is a long operation) I did have my own room so between obvs I did try to doze. Once home, so long as you don't try to do too much it is fine. My husband took a few days off work then it was the school hols and my teenage daughter did my bidding - more fetching and carrying rather than being looked after. She also was a good zimmer frame for me as I found it difficult to stand up straight for weeks and because of that my back muscles hurt. You may not have this issue.

My appetite was fine but didn't want large portions, my stomach was so tight. I did have swelling and the post-surgery bra and the compression knickers really helped - even so my stomach was very very taunt and flat. I also lost further weight due to eating less!! I went down a size in clothes!!!

Needing help to get out of bed was more to do with having to keep my knees bent, not being able to use my arm on my affected side -  the mechanics of it all rather than any pain. But you dont want to do anything that will pull on your abdominal wound. To begin with I slept with lots of pillows - V pillow to be semi upright while skin on tummy stretched. Things progressively get better - although at the time you may think otherwise.

You may need help in the shower to begin with - use can only use arm on non affected side to wash hair etc

Pain not too bad - you will be given morphine in hospital. At home used paracetamol (take them so you don't have any pain) and they gave me some strong pain killers which I took sometimes in the evening. I did have shooting stabs in my tummy as all the nerves healed.

You are not allowed to drive for 6 weeks. 

Be patient with yourself it takes a while to be back to normal but it is definitely worth it as you'll have a new boob that hangs naturally and is warm to touch. Mine was a little flat and fat to begin with and I have had lipo and refill plus nipple recon and tattoo - again all worth it.

I am now back to completely as before wearing underwired bras, bikinis etc My abdominal scar is now just a thin white line - you will also have a thin white line around your new tummy button where they pull it through again. I know the above sounds terrible but so long as you are patient with yourself things will be fine. And it is worth the hassle!!!! XXXxx