I am beginning the first steps towards a diep recon, and on 4th Nov I will be getting a tissue expander fitted.
I was wondering if any of you can advise on the following:
How long am I likely to be in hospital?
What is the pain like afterwards?
Is it uncomfortable?
Is it hard to get to sleep?
The surgeon says the results will be better if I have this proceedure first, why is that exactly?
What will the final scar be like if they use the same one at each stage of the recon?
I have been told it will be in for 2-3 mths. My chest skin is very tight, the tumour was nr the chest wall so all muscle was taken.
Hi Artygirl
I had one fitted immediately after my mastectomy last month .Hopefully it will stretch the skin to enable me to have an implant later on.
I have to say it’s not the most comfortable experience,not painful but it does affect my sleep .Trying to get into a comfortable position is difficult and I haven’t had any extra filling yet.It feels tight and I did think it was my wound scar that was really tight but now I think it’s the expander next to the chest wall.It occasionally feels like I’ve got a stitch and I have to sit up straight to get rid of it.It feels like I’ve had a piece of cardboard folded and shoved in there but it is manageable and if I get the shape I want at the end of it so be it.The port is under the skin in the armpit and I’m used to sleeping on that side so quite uncomfy,sometimes.
Sorry if that’s not what you were hoping to hear but best to be prepared and it’s not life threatening .I was out less than 24 hours after the mastectomy and insertion of expander.I came home with the drain .Not painful for me but a nuisance.
Good luck ,yours might be more comfortable than mine
Carole
Hello, I had some fitted yesterday and so far it’s not uncomfortable and I can sleep…but we’ll see what happens when they fill them! I’ll be having a DIEP recon in a year. They will be using them to stretch your skin to make a pocket for your tissue.
I had bilateral mastectomy and tissue expanders fitted in June 2011.
I have had 4 ‘filling’ sessions and now have 650mls in each side and they are full now.
The filling sessions:- when they actually put the needle into the valve it was sore as the expanders were placed under the peck muscle, so quite deep. They did put local in to make it less sore. When the water goes in, it doesn’t hurt. You just feel and can see your chest grow (Very sureal!!!), but you will feel when you are full enough for that session as it will start to feel too stretched. My consultant would them pull a bit back into the syringe.
For a day or two later it would feel a bit like a pulled muscle.
They are rock solid, so lying on front is like trying to sleep with two rocks in the bed. I am hoping they will be better once the permanent implants are put in.
Thanks ladies, I appreciate honesty. Suspected as much, but doc said it was a little uncomfortable, men ay!
I have a couple more Qs. How do you manage with your prosthesis over top of wound and expander? What clothes can you wear to disguise it? I am a teacher and need to look ‘normal’.
My doc said it would be filled every week. How long do they wait before the first filling, scared of spliting scar!!!
My bad side is my sleep side, and I haven’t had a full nights sleep since my diagnosis 5 yrs ago. Seem to be perm knackered!
Hi Artygirl
I got a couple of lovely fitting bras from braclinic and use the softee from the BC nurse.Just ask her and they should sort you out.You can take out some of the fibrefil if its too full.There’s no pain or rubbing on the scar and even under the arm where the port is under the skin ,the edge of the bra is soft and lower.
They’re supposed to fill the expander a little at a time every couple of weeks.Mine had 15 mls put in on the day of insertion but when I went back to get the first real fill last week ,he said he was going to wait a couple more weeks until the tighteness of the op had subsided a little more.There’s no rush he said and we’ll do it so that it’s as comfortable as possible.Can’t ask for more than that.
Hi irene, posted under your other thread, I had mine done at RVI, not nice really but more just a bit uncomfie when blow it up, then eases off and then back for it, for me the worst bit was the size difference but now due to messing up last op I have prothesis and pumped up side. Mine grew in an odd shape right under my collarbone but all due to rads scaring but it has done it’s job in stretching the skin however I will have different scaring on each side as they still need a flap of skin from my tummy to fill out the inflated side - if that makes any sense.
Well I am back home after stage one of my recon, where an expander was fitted 3 days ago.
It seems to have gone very smoothly, and I had 100mls of fluid put into it during the op, so I actually have a small cleavedge which was quite emotional and exciting to see!
I feel bruised and sore, but not too bad really. I am really taking it easy though.
I Have been told it will be 2-3 mths of weekly filling before I have the big op, which is the belly fat one.
Just wanted to say it has not been too bad at all, so if you are thinking of having an expander, don’t worry too much about it.
thanks artygirl … its good to know. Having an expander fitted early next year when I have the back flap op… this will be replaced with an implant about six months later. I was worried about the expander … I’ve heard some horrid stories about the position when its expanded and matching up the other side …
Did I speak too soon?! Not enjoying this experience at all, and if any of you have any tips to help me I would be more than grateful.
I actually had 150 mls put in during op. This week I had another 50mls put in. It has been so uncomfortable since at bed time. Taking Ibrufen and Paracetamol with little affect.
I returned to work after having 2.5 weeks off, and along with the stress and physical problems, ie no lifting, cant lift my arm high enough to write on board, boobs uneven, sore etc. Feeling pretty low. But the worst thing by far is the lack of sleep.
I just can’t get comfy. It is better proped up on back, but just cant sleep like that. Hate how it feels when I lay on my side as the implant contents sort of slosh, and the edges are hard and pushing against sore, scar tissue.
Should I ask doc for sleep tabs? never had them before, but exhusted.
Angielav, meant to say, boobs sort of match by using a softie boob with some filling taken out. The main prob is getting both looking balanced as real boob is heavier and hangs differently than softie.
I had 2 put in and it was about a month before they felt more comfortable - now I just have a slightly tight feeling (but may be due to rads) and can sleep on my side and on my front (bliss!).
Well it feels a bit better today, though I woke up after only 4 hrs sleep this am to find myself on my usual sleep side. My poor body must be yearning to get comfy in my usual position. Problem is it was really sore, and I had to get up for pain killers!
I am just hoping that over the next few weeks it gets less sore, uncomfortable I am expecting, but the soreness around entire edge of implant is not nice!
To be honest what with my situation I have had to learn to sleep on back but must say im about 5 month after last expdander and I can sleep on that side which i never thought i would do and doesnt hurt. Good luck, Im having lots of problems with RVI
I had a tissue expander put in after my Mx on 6th Oct as I need rads so didn’t want an immediate reconstruction. The PS managed to save quite a lot of skin so he put 280 cc immediately. I didn’t thank him for that because I was in quite a lot of pain and it felt very tight. I’ve had 2x50 cc fills since then. The first OK but the second made it very tight again and so I decided not to have anymore before starting chemo last week.
My advice is to keep taking industrial strength pain relief (I used paracetamol and prescribed codeine - stronger than the OTC stuff). It won’t do you any harm and it will relieve both pain and feeling of pressure. Another thing I found useful was to sleep on my back with a pillow under my arm on that side. Not sure whether it helps because of the position of the arm or because it stopped me rolling. I too finding sleeping on my back uncomfortable but it took a while before I could sleep on my side. I still find putting pillows in various places helps e.g. I could half lie on the affected side by putting a pillow under other side and leaning against it.
My current problem is the big dent I have in the side where they did the ANC and the very hard edge of tissue expander is above this. I’ve been told I have to keep massaging this until the area softens hmmm
It has improved again, not as sore, and sleeping better. Had 70 mls this week instead of the usual 50, but it was too tight so will return to 50 next week.
Biggest shock was that I was told for the first time that I need 6 mths with the implant in at full stretch of 600mls, to allow skin to settle, so next stage will be July, not February as I’d expected.
I am massaging my scar twice daily, but no one has said to massage the edge of the implant which like filosofie, is quite hard.
The plus side is I am getting a clevledge, the down side is it is really hard to balance the boobs as the softie is light so sits higher than my own boob. Reluctant to buy a new bra, but it it helps will do. any tips would really help.
Artygirl
I now have 300 mls in mine ,supposedly half way there .I’ve been having 100 mls at a time because I thought I’d be getting chemotherapy and rads and wanted to get the expansion done as quickly as possible .Now I know I’m not getting either just arimidex,I can take my time with the expander fill,although I will try to continue will the 100 mls every fortnight ,if I can.This last one (100 mls to bring it up to 300mls) does feel tight but constant massage with bio oil does make it feel more comfortable and at least I am sleeping better even on my bad side.
I am expecting to get the implant next feb or march
hiya, I had 800 mls in and end feb for op so is 18 months with expander in at same hospital as you. It does ease off a bit but mine sits so high and filled high up due to rads that have to wear a scarf all the time, once it had settled and totally healed I got a simi hollow prostehsis which although uncomife on top of expansion i do feel more even.
Interesting to read the comments ongoing here! Read them before I had mine and now I’ve got them, it makes much more sense! I have had a double mastectomy with expander implants about 3 weeks ago. The ports are very sore still, but I’d love to know long term how the muscles settle, if they do? I can’t get used to the tightness of the feeling when they contract and I’m a very active person, so this is quite important to me!
I ride horses, and I just can’t see me ever getting back on one if this continues. Not even had a fill yet. I know it is early days still, and if it is 6 months then it is, but if they are always going to be like this, I need to know. No one tells you this stuff …
Mistymoley
The expanders do feel very tight especially after a fill but they settle within a day or two.They are meant to be tight though otherwise the skin won’t stretch enough.You don’t say whether you are big busted or not so that will govern how long it will take and how much you’ll have added.I had my surgery in October and am expecting implant in February or March .I have 400 mls in now and expect 600mls in total but I’m fairly small busted.
The implant although harder than your own breasts will be a lot more pliable than the expanders.The most uncomfy area for me now that I don’t notice the port under my arm ,is the muscle being stretched just under my collar bone.That seems a funny area to be stretching but it’s to allow for the droop but I think it’s the most uncomfortable because its where the muscle begins.
The surgeon is very flexible (unlike the expander)and has said it can take as long as I want so small fills are possible and he won’t stop with the treatment or surgery until I’m happy with the result.I can’t complain about that
Mine was still very uncomfortable for at least the first four weeks but now it’s much much better
Carole