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Post-mastectomy with reconstruction swelling - how long?

21 Nov 2018 18:19

Hi All,

I'm two weeks post mastectomy with reconstruction (fixed silicone implant).

I don't have any pain around the area of the operation, but in terms of how swollen the breast is... well it feels like my skin is literally going to burst open like something out of Alien!  It's as if someone has opened up my breast and put in the largest bowling ball my skin can possibly stretch over.

I did have my lymph nodes removed but there is actually very little fluid buildup in the underarm, I assume this swelling is just natural inflammation all around the breast due to having had surgery in the area?

Does anyone have experience of how long the swelling took to go down?  Someone told me it can be months, I don't have clothes to go over it though it's that big.  I've already stretched two of my good t-shirts just by wearing them, I don't want to ruin any more clothes.  The bras MacMillan gave me can't be worn anymore as they are pulled so tight they dig in all around.  I want to be back at work soon but can hardly go in wearing the two pyjama tops I wore for post-surgery in the hospital Laugh yet they're the only things that will fit over my alien breast.

Thoughts?

LJx

Post-mastectomy with reconstruction swelling - how long?

23 Nov 2018 22:19 in response to TwinTwo

I'm sorry you're having a bit of difficulty post op LJ.

I've had a quick look through the forum and found that @Cydonia ‍ and @DBird ‍ have recently had similar surgery so hopefully they'll stop by to chat and share their experiences with you when they can now that I've mentioned them in this post.

You may be able to get some tips and advice from the breast cancer ladies on the good and the bad thread so do drop in and say hi as I'm sure they'll do all they can to help as well.

Fingers crossed the swelling starts to go down soon.

All the best, 

Steph, Cancer Chat Moderator

Post-mastectomy with reconstruction swelling - how long?

23 Nov 2018 23:10 in response to Moderator Steph

Thanks Steph, that's great.

Surgeon did say this morning, in a bemused way, "I'm not sure it can get any bigger!"

Laugh

It's a humorous sight at least.

LJx

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 11:56 in response to TwinTwo

Hi, 

 

I've just seen this post. So I'm now four weeks post op I had a diep reconstruction which is where the use your tummy fat rather than implants.  Mine is also still swollen but only slightly so I'm not too sure what help I can be I'm afraid.

 

Did you have all of your lymph nodes removed? Have you spoken to your reconstruction nurse/s? Mine is brilliant and aways has the best suggestions as she's seen it all before.

I've literally only just started wearing tops I can pull over my head and arms for the first two/three weeks I was wearing tops that I could button up it was soo much easier.. I wore boyfriend shirts but a baggy man's shirt would be just as good and they're so comfy! Especially because of tummy stitches at first they were incredibly tight so trousers were a massive no so I was rocking shirts and leggings for the most part. Maybe you can give the shirts a try, maybe with a vest top under--then you don't have to attempt to button the shirt up across your alien boobs lol primark or ebay are good for these.

 

Have you had your post op check ups at plastics yet? They may be able to let you know more about swelling and liquid build up. I would be slightly concerned about the amount of swelling. Are you still wearing the bras?

Hope some of this helps. 

Dbird. 

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 15:44 in response to DBird

Thanks Dbird,

Since posting they've had me in and drained it.  They then set an appointment for the following week (Tuesday just passed) to assess again but didn't drain it.  They don't want to do it too often as it could introduce infection.  Seeing them again tomorrow and I think they probably will drain again tomorrow.

My radiotherapy referral has been sent now so I need it to go down as soon as possible so I can start radiotherapy.

It seems to be just one of those things to do with the lymph node removal (I had all 10 axillary nodes removed) and mine is just a more extreme case than usual.  Sod's law for me :-D

LJxx

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 15:50 in response to TwinTwo

Yes I was going to suggest they drain the fluid! Lol wait so you're having radiotheraphy after your surgery? I thought they liked to do that all before??

 

Sorry I would have replied beforehand but this website doesn't like to tell me when I've  been attached to anything - however today it's being on its best behaviour! 

I had three nodes removed and I cant feel the lower part of my armpit properly, is that the same for you? Still feels like there's a local anesthetic there!

Well I personally would blame your alien boobs on it all lol

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 17:11 in response to DBird

Yeah.  Basically I have to have chemo as soon as I was diagnosed as it was already spreading.

Then after chemo I had to have the surgery asap as the chemo didn't seem to have been very effective and clearly some of my lymph nodes were still looking likely to be cancerous.  In the end they removed 10 lymph nodes, 4 of which had tumours and another 4 had been cancerous but the chemo had killed those cells off.  They weren't going to know until after surgery if i needed radiotherapy or not so it was all a case of doing the surgery I wanted long-term and hoping no radiotherapy was required.

Anyhoos, it is Laugh  Hopefully it won't upset the skin too much so won't affect the reconstruction too much.  It's mainly an aesthetic risk so that doesn't bother me much (albeit it will my awesome surgeon!) but there is a risk it will bring the life of the implant down to 2 years.  Hey ho.

With the fluid build-up I have no sensation in my armpit or down the back of my left arm.  After draining I get sensation back everywhere except for a large area of the armpit.  It's weird for putting deodorant on but isn't the end of the world.  Honestly though, when the fluid is huge I get an itch on the back of my upper arm that I can't scratch because there's no sensation there, it's the weirdest and most annoying thing!

Alien boob is doing well with its increase today.  Got two Christmas parties at the weekend so might be vain for once and actually ask that they drain it tomorrow so I can wear nice clothes.

Oh the things we go through :D

LJx

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 17:58 in response to TwinTwo

Lol be vain!  Sorry I feel like I was being really nosey when I was asking now! See I find putting deodorant on absolutely fine but shaving is still really strange I can barely feel it so I'm really conscious when shaving now! 

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 18:03 in response to DBird

Not nosey at all, I'm finding it all rather amusing what I'm having to go through to be honest Laugh

Shaving is, indeed, a bit precarious, and as I currently have cording it's pretty much impossible!

Post-mastectomy with reconstruction swelling - how long?

6 Dec 2018 18:07 in response to TwinTwo

Haha I had cording too! It was rather frustrating seeing as I was doing all my exercises religiously!

My cords popped the second time I did the stage two exercises! So don't worry too much about it! They may pop on their own or the physiotherapist will help you out with that. The pop is very interesting doesn't hurt  you hear and feel it and then you're like yes my arm can now do this *lifts arm fully straight in the air get in! 

Post-mastectomy with reconstruction swelling - how long?

21 Jan 2019 22:11 in response to DBird

Hi DBird & TwinTwo

sorry to hear everything your both going through, though you are obviously grinning through it.  Seeing the funny

 

more seriously, two questions:

Have you had tingling in the numb areas? The back of my arm and my armpit is numb, but I have tingling in my elbow and occasionally down my arm.  To be honest I’m hoping it means the numbness will go

I am getting a popping / movement in the pectoral muscle when I make certain movements, I can make the movement but almost feels like the muscle jerks...  Is that cording? 

 

I had my right breast removed last week, without reconstruction, though that is an option for the future.  The surgery is healing ok, though I have a drain in which seems to be taking forever to reach the required 30ml level (when it can be removed).  I am doing the physio exercises and have much more movement than I thought I would Happy 

A

 

Post-mastectomy with reconstruction swelling - how long?

21 Jan 2019 22:29 in response to Alison168

Hi, 

Cording was my best friend lol that one feel like a little Web where ever it is and restricts your movements its feels really tights. Mine popped on their own when I stretched some took weeks.

I have a lack of sensation but it's not a tingling occasionally u get sharp fuzzy feelings in my stomach but it's rare.... My surgeon said its where my stomach is knitting back together but he did hive me a weirdo look first like that's not supposed to happen so I don't know... Speak to your team about it as I didn't have numbness just to be on the safe side =) 

Post-mastectomy with reconstruction swelling - how long?

21 Jan 2019 23:08 in response to Alison168

Hi there

I had a mastectomy on 9 Jan without reconstruction. My left arm is tingly near my elbow sometimes and a bit funny feeling up to my shoulder. I was told this is quite normal. I didn’t have a drain and have some fluid build up behind the wound which gives a rather disconcerting ‘hot water bottle schloosh’ sound if you turn abruptly! Apparently this should all settle down in a few weeks.

 

Sheila xx

Post-mastectomy with reconstruction swelling - how long?

22 Jan 2019 13:43 in response to TwinTwo

Hi there again TwinTwo.  Have been away for a few days and just wanted to say I am still thinking of you and reading your posts.  Good on all you great ladies for the way you are getting through this.  Annie

Post-mastectomy with reconstruction swelling - how long?

23 Jan 2019 19:17 in response to Annieliz

 

Hello ladies, 

that is a great description of cording DBird and really helpfull - I will know if when I get it, don’t think I have yet but now know what to watch out for.

Will def’ check with the nurses tomorrow about the tingles and other weird feelings in my muscles, though it seems arm tingling is common and quite possibly the feeling returning! I hope! 

Had good old news today - that my drain is coming out tomorrow (yeah!!) not that I don’t love the cloth drain bag which some kind people made and supplied to the nurses but much better for bodily fluids to stay on the inside. I do know what you mean Shelia about the ‘hot water bottle slosh’ I had a build up before I left hospital (the drain wasn’t working - stitches too tight) and it is definitely tidal! 

 

Take care, A

Post-mastectomy with reconstruction swelling - how long?

23 Jan 2019 19:22 in response to Alison168

Hey, 

No problem. If you do get cording mine popped on their own with the stretches. However, I was naughty and pulled my arm to force a pop or two =)

I never went home with my drain they took it out the day I left hospital. Its a strange sensation when it comes out but its all fine doesn't hurt more like a vacumn.

Good luck with the nurses tomorrow! 

Post-mastectomy with reconstruction swelling - how long?

24 Jan 2019 00:35 in response to Alison168

Hi Alison,

I did have some tingling, albeit not much, in other parts of my arm (parts that weren't numb).  I wouldn't worry about any strange sensations at the moment as your body has been through a lot, just make sure your team are aware of them.

I was draining like a trouper so they had to leave mine in right to the last minute (i.e. the point at which the risk of infection gets too high to not remove the drain). Then I had to have a seroma drained 3 weeks later (over 600ml!!!!!)

Not sure about your pectoral muscle issue, doesn't sound like my experience of cording.  However, much as cording feels like it's in the underarm it does stretch all the way to the breast and I imagine no two cases will be identical so can't rule out that the sensation you're getting might be due to cording.

Good luck with your recover.

LJx

Post-mastectomy with reconstruction swelling - how long?

24 Jan 2019 00:38 in response to DBird

Sorry DBird, just saw this.

My cording hasn't popped (sadly, cause I'm liking the sound of it Laugh ) but given what's been going on since the start of this year I'd forgotten about it.  Just checked on it now and while I can still feel it in my armpit it is now tucked right up in there and my range of motion is complete now.

Who knows, maybe it'll still pop someday, it sounds like quite a fun sensation to have.

LJx

Post-mastectomy with reconstruction swelling - how long?

24 Jan 2019 08:39 in response to TwinTwo

Hey LJ, 

My cord was under my arm and then I had parts along and down my arm. Then I had individual knots down to my wrist lol they were a pain in the butt! They have me booked in with a physio at the end of the month... Just so I can go and be like hmm I sorted it again lol the popping sensation it's weird. It doesn't hurt I don't know how to explain it.  Its like a ping. The first time I was like woah because that was the biggest pop. And then like on the third time my sister heard it and was like what the hell was that that's just part of my body snapping. =) 

Post-mastectomy with reconstruction swelling - how long?

24 Jan 2019 21:18 in response to DBird

Hi,

 

Yipee my drain is out, no more carrying a bag of bodily fluids around and I can shower for the first time in a week! Though I admit to cheating and going to the hairdressers for a pamper a few days ago ... and felt much better for it 

I can’t say I’m looking forward to cording ‘popping’ though good to be aware - about to start the stage 2 exercises so we shall see! 

 What a shame you have had to wait for physio DBird - I’ve found that a good physio can have an amazing effect post opp so hope it is useful for you, even though you’ve solved it yourself! 

Hope everyone is coping ok with any new or ongoing treatments 

xxA

Post-mastectomy with reconstruction swelling - how long?

24 Jan 2019 21:28 in response to Alison168

Hey, 

 

Glad to hear the drains out.  Don't worry about the popping it's fine =) seriously it's just weird. 

Oh no they offered me physio before, but I declined it because the cord popped and I said to the physio on the phone its gone so she said don't come... So I didn't. But then it came back but there were no appointments. until the end of the month  And now all cords have popped and I have full movement and zero pain... 

Post-mastectomy with reconstruction swelling - how long?

3 May 2019 21:17 in response to Alison168

Hi, I had my second Mastectomy, in April, with reconstruction from my back, as previously had the tummy used.

I have the hot water bottle feeding, which is driving me mad.

Back for dressing change on Tuesday, and results the following weekend.

Had DCIS only option was mastectomy, as had radiotheraphy 4 years ago.