Hi all,
I’m 30 and have just registered after being diagnosed 2 weeks ago with grade 3 invasive ductal carsa-whatsit in my left breast. I have already been blessed by all your helpful hints and honest replies on the other discussions, especially that one on headscarfs - really useful.
I’m going in for my mastectomy and immediate reconstruction on 11th Sept and wondered if anyone who’s been through it could advise me of do’s and don’ts or at least what I can expect to feel after surgery or even what to take to the hospital. They’ll be removing 5 lymph nodes too.
After surgery I’ll be taking tamoxifen (I think that’s what it’s called) and having chemo. Other treatment will be decided once results from surgery come back.
Hi Liz, snap, my mastectomy and reconstruction is also on 11 September- so sorry that you are also having to join this rollercoaster of emotions.
What type of recon are you having? I am having LD and implant due to the fact that I had radiotherapy 3 and half years ago.
I think that you can expect a couple of drains after surgery which may stay in for anything up to 2 weeks so I found it handy last time (had Lumpectomy and lmyph nodes removed 4 years ago) to have a soft bag that went across the body stopping at the waist to put the drains in so that you are not dragging them around all day. For the first few days they fill up quite a lot so don’t be surprised. I wasn’t in too much pain last time and was home next day but this time they said I will be in from 3-5 days and may be more painful due to the back muscle being moved. They told me best to ask for pain relief before it gets too bad then it is controlled easier.
Re what to take in I went to my local M&S and saw one of the mastectomy advisors and she showed me some really good bras that offer good support but are also very soft. Also front opening pyjamas are good and those secret support tops that you can step into. Call me paranoid but I have bought antibacterial MRSA wipes for the hospital bathroom! just don’t want to take any risks!!
Other girls have advised me to take in comfy pillows and ask for a bed that moves up and down electrically so that it is easier to move afterwards. I think some people have a catheter in afterwards but I asked my surgeon and he plans not to use one if possible.
Don’t know about you but am finding the waiting quite hard and keeping myself manically busy until then. Kids back to school on Tuesday and have planned lots of nice things and lunches out this week to keep my mind occupied.
First of all, I’d like to wish you well and send you positive thoughts for your surgery date…
I had my surgery and tissue expander recons last week. I took a variety of things with me that I didn’t need, however those I found most useful were the following:
Face wipes/baby wipes
Chewing gum
Small cushions
My own blanket (hospital sheets are awful)
Front fastening PJs or kimono style tops
I also found that sleeping practically upright (with the small cushions under my arms) was comfier, and also easier to get up in the morning. Your chest muscle will be very tight and it was a nightmare trying to get up from a horizontal position.
Physically I was exhausted but am slowly getting better - make sure you do your exercises!! Mentally I am still dealing with it all and I feel that it will take me longer to get over things mentally than it will physically…
If I can help with anything else or you have any questions about anything specific, then please let me know…
Thanks so much for the advice. Really helpful. I’d better get shopping!
I’m not sure what it’s called but I’m having skin and muscle removed from my back and I’m having an implant. I’ve not got enough fat to make my own boob. (I’ll take it as a compliment!)
Sarah - We’ll have to compare stories of hospital food, crazy patients and the like when we’re out (!!?!?!).
Poannie - Thanks for your help, I’ll do my exercises, you can check up if you like
Poannie, do you mind me asking did you have both done or just one? I originally only wanted one done at a time and think it is too late too change my mind now but was wondering if it would have been better to get both over and done with? Also did you have back flap or just implant? I am just worried about how I will sleep with cuts on back and front - upright sounds good and I will def be taking pillows and cushions - will need a bigger suitcase at this rate!!
I found out I had DCIS 2 days before my 2 week holiday then my surgeon was away for 2 weeks and I wanted to wait for him as he did excellent surgery last time(lumpectomy and lymph nodes 4 years ago). Altogether it will be 6 weeks and originally I think I put it to the back of my mind but as date looms nearer am finding it really hard - waking at night, funny dreams, eating rubbish which I know is no good for me and trying to occupy every minute of every day so I don’t think too much. I have stocked up the house as if we were going into war time - my husband has commented that he does know how to get to Sainsbury’s!!
How do you get through the days without going mad? It’s taking over my life again and is so unfair. I hate having to explain to my kids about mastectomies - saying that my 10 year old thinks muscles turning into boobs is hilarious!!
Sorry for the rant - don’t know how I would cope without this site.
Love Sarah x
I am 2 weeks post mastectomy with LD (back skin and muscle) reconstruction on the right.
I didnt have a catheter, had two drains one into my chest/breast and the other my back but both drains came out of holes in my side. I awoke with a saline drip which is used to increase urine output and also hooked up to morphine which i used only a couple of times. Very rarely took Paracetamol or Co-codamol although I was more uncomfortable than in any pain. Getting comfy is a bit of a problem initially, lots of pillows helps although I am finding it easier now. The drain into my chest/breast came out after two days and the drain into my back came out after a week, i was then allowed home. I have a build up of fluid on my back which will be drained at follow up on Tues, and i believe normal.
As for things to take in,
plenty of books/mags (i was lucky got a side room with telly so could watch that)
wet wipes (a must as you cant bath properly)
front opening pj’s or (like me) loose fitting vest tops for them to peer into (!)
As for bras i didnt wear one whilst in hospital, only when i was discharged purely because ive had a mastectomy on left which is waiting to be reconstructed 12 months after rads so didnt want to walk out of hospital lopsided. I wore a post surgery bra from ASDA’s, the same one i wore when discharged from hospital after last years mastectomy. I couldnt wear it for long as i found it very uncomfortable across my back and have only been wearing it when i need to since back home ie going shopping etc. Once swelling has gone down, which it has mostly, I will go and get measured and buy new bras, but not much point before as you never really know what size your gonna be.
Just one thing to mention, which no-one mentioned to me and I only know cos i overheard - you get a lifetime warranty for your implant. Make sure you ask for the paperwork if you arent given it as you need to register your implant 90 days after surgery for you to be able to claim in the future (fingers crossed you wont need to but just in case).
for hospital i can also suggest some slip on slippers for when your walking around and a photo of your children or loved one etc, that was always a nice touch when i was lying there unable to move. oh and lots of money to be able to watch the tele and make calls, probably need a loan for that.
Hi Tracey - photo idea is lovely- my suitcase is getting bigger and bigger every day! - they will think I am planning to move what with pillows, cushions,blankets and bundles of wet wipes!
S x
I had both sides done as I had tumours in both breasts. I’ve got tissue expanders in at the minute (feeling really tight in my chest and quite a bit of swelling under my left arm compared tor right - consultant says this is okay) and when they are inflated I’ll have them removed and my permanent implants put in.
I took loads of pictures of my wedding with me and put them up on the wall opposite my bed, so I had lovely stuff to look at last thing at night and first thing in the morning…
Hi Poannie, thanks for getting back to me. I had lymph nodes out first time round so haven’t got that to contend with but am not sure what type of implant I am having. Apparantly both types have been ordered by my surgeon and it depends on how it goes on the day. He is hoping to use permanent silicon one and no expander but if he needs an expander it will be a permanent expander with silicon on outside and saline pocket inside to use for expansion.
Only a week to go so not long now.
Finding retail therapy very helpfull!! Hopefully I will be in hospital when my husband reads the credit card bill Ha!!
S x
Hi
Just wanted to add my piece of info for hospital stay.
I am 3 weeks post mastec with immediate recon using LD flap. Not so much painful as uncomfortable. I was given intermittent morphine which was good in the first 24 hours but after that it left me so zonked that good old paracetamol was much better and normally i’d be the first to scoff at it but it really was the best thing for pain relief. One recommendation is to take a pillow that you like into hospital as it is really important. In hospital the pillows all had plastic protectors on so they make you sweat and unfortunately in the early days your not really able to move around too much or too quickly. I work in a hospital so had already landed in with my bright yellow pillow case (just so it wouldn’t go walking and be easily identified). My other life saver in hospital which goes without saying was my mobile just so that I felt that I could contact those on the outside.
I was advised to bring sports bra’s into hospital with me as my surgeon wanted to be able to use the bra in theatre to ensure the right size was obtained but since coming home I’ve lost some fluid from around my breast and it has actually ended up a bit smaller than what I was previously not that there was much in the first place. To look at my breast you wouldn’t believe i’ve had a mastectomy but I just want to warn you that although you read about it and prepare yourself the feeling and sensation is totally different. I suppose naively I thought that because my breast looks normal it would feel normal. It DOESNT so be prepared. I am pleased with the surgery although didn’t have an implant and feel that hopefully for both of you that that will make a difference.
Drains are more uncomfortable in and by the time they are ready to come out you’ll be glad. You’ll feel a lot better when they are removed. I had myself more worried about them being removed than the surgery but they only sting for a minute coming out and then the relief you feel is worth that minute of stinging. They really aren’t bad coming out but cumbersome to carry around. I also had two in and got one out 4 days following surgery and the other one out on the 5th day which was the day I went home which if you’re fit is better sooner as there is nothing like sleeping in your own bed.
I also just want to advise that for anyone having surgery which I hope doesn’t sound too gross but don’t let yourself become constipated because that is the one pain that is more excruciating than any of the surgery.
Good luck and I’ll be thinking of you on the 11th.
Hi Wendy, own pillows definitely seem to be the general consensus for the best thing to take in. I had one drain before when I had lumpectomy and was really worried about it being taken out but as you said not too bad at all. Such a pain in the neck when they are in to drag around all day.
This may sound like a strange question but does the new breast have much much feeling? hurt at lot? or is the pain more in the back? Other ladies have said that the recon breast feels bubbly.
When I saw the pharmacist I said that I was worried about constipation as I know pain killers can bring it on but apparently Diclofenac(not sure spelt right?) is a strong ibuprofen based pain killer and does not give constipation as much but could actually upset your stomach. So anyone else it might be worth enquiring about that? I just remember the severe constipation from chemo - not nice.
Thanks a lot for your tips - I just need to get my head round it now and stop worrying and remember why I am having it done.
Sarah
Just to let you know the new breast doesn’t really have much sensation at all some there but Ihave been advised that the sensation may return and it may not which leaves me wondering is this it because it really feels quite surreal. From day one there has been no pain to speak of in my breast it has been in my back only or at the drain sites. A small collection of fluid has developed at my back and I’ve had it drained once and a 2nd attempt which was unsuccessful but it is now starting to absorb itself. Initally in the breast there was a lot of fluid and when I lay down it sounded like a hot water bottle but that has now also gone and I’m feeling remarkably well. The one thing that is hard is not being able to drive but I’m getting there.
Hope this helps and good luck
Wendy xoxo
Wendy, thanks so much for the advice, so helpful.
I bought a special spongey pillow today to aid comfortability, and like you Sarah, retail therapy is great! My MacMillian nurse said she may be able to get some money from a trust for the clothes I’ve bought for the hospital. Keep your receipts Sarah, it’s worth a try.
I feel so much more prepared reading everyone’s advice. The pre-op assessment I had yesterday was also very insightful.
Liz x
