Please help.Did anyone else feel like this after LD recon?

Public Archive
1

I returned home last week after a 12 hour op for immediate LD recon on both breast. I had the op on 14.6.08 and know it is early days, but am worried about several things and am not seeing my plastic surgeon for 3 months. I look and feel like a freak and am scared to go out the house.

  1. My new boobs are under my arms and not where they should be. I cant put my arms down by my sides properly and they chafe against my rock hard boobs. My bingo wings are really painful and I dont know why. I look like a muscle man.
  2. I have swellings/fat/muscle under the backs of my arms.
  3. My right boob is a lot higher than my left boob and bigger.
  4. My back is very numb.
  5. I have a hollow the one side of my back and a swelling on the other side of my back and am frightened to wear tight bras.Was 36c. Wearing 40 c now.
  6. I feel like I am being strangled by a very tight elastic band which never gets better.
  7. My sides are the most painful, and am longing to eventually be able to lie on my side in bed.
  8. My stomach and above is really swollen and I look 9 months pregnant, consequently my bras are pressing in tight on my thorax.
  9. I cant stand up straight and have round shoulders.
  10. All my clothes are too small.

Has anyone else experienced the same? Your help is really appreciated.

Max

2

Max

I felt like a freak after a single delayed LD flap and I had Becker implants which sat halfway into my armpits and the ports stuck out like bolts on Frankenstein’s monster. Thankfully 5 months later I had them swapped for permanent ones but I am STILL absolutely NOT satisfied. I am giving the surgeon a hard time over this and I will not let it drop until I get a second opinion. Please make an appointment to see your PS again and have it out with him/her so that you can understand if things will improve or not. Do NOT think you have to be grateful or any of that cr*p as you (generally) only get one shot at so-called recon and it must be right for you. Please please please do not accept this, go back and rattle their cages. 11 months down the line and I still feel like I’m wearing some kind of harness but I am banging on the door and will keep doing so until I get some sort of resolution.

The patient from hell.

3

Hi Maxine

You may want to talk through these questions with one of our trained members of staff on the BCC helpline. Here you can share your concerns and the staff will be able to offer you support and advice. The number to call is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

I hope this is helpful.

Kind regards

Sam
BCC Facilitator

4

Hi Maxine,

I was glad to see a posting from you (though not to hear of the problems you are having) as I remember you were due to have a bilateral/recon about the same time as me (end May) but yours was delayed.

I have expander implants fitted not LD flap but have experienced some of the same things

  1. Arms down by my sides - sympathise completely. Either forced my arms and feel really uncomfortable or held them a few inches out from my sides and felt like Michelin woman. This has improved now but still feels like a cuff under the arms.
  2. 6 weeks post op most of my swelling/bruising has gone down, but it was very gradual. This really improves appearance and feels more comfortable.
  3. Areas of numbness on sides/breasts are still coming and going.
  4. I haven’t been wearing a bra. a) None of my bras (34B) would cover this vast expanse on my chest b) the rocks don’t need any additional support - they can stand up for themselves! But seriously I have found “Secret Support” vests from M&S a comfortable alternative and they have given appearance of a bust. In the warmer weather I have worn these round the house and covered up with loose fitting clothes to go outside - don’t want to frighten anyone.
  5. The tightness on my chest was pretty unbearable. I couldn’t breathe freely and it was agony to take a deep breath/sneeze/cough/laugh. The tightness is still the first thing I notice when I wake up in the morning but would say it’s down from 9/10 to 5/10. The exercises seem to be helping.
  6. I spent 4 weeks sleeping on my back or half sitting up and it was driving me nuts. I had started getting a bedsore on my tail bone and never felt rested. Then several ladies on here recommended a V pillow and it has really helped. The last few nights I have gone to sleep on my side and still been there in the morning. Bliss.

It seems a long wait to see your PS. Aren’t you having post op checks with the surgeon?

I felt like a freak but found going out even just to post a letter or to the local shop was a help when I realised nobody gave me a second look.

Hope a few of the above help you to know you’re not suffering alone. You have had a huge operation and will need time to recover - don’t give up hope - things will improve. Straight home from hospital you are at a very vulnerable stage and it’s easy to lose confidence. I was impressed how articulate you are to have made a list - I was like a zombie when I first came home due to the drugs I guess.

Best Wishes
Misha

5

Hi Maxinebev…I will cover your points one at a time and see if I am of any help but bear in mind I only had one boob done (on 8th March this year).
1 ) Yes I know what you mean here. I wore my sports bra for as long as I could every day…and still continue to wear a sports bra most of the time(though I do wear normal bras when I am going somewhere special) and this has helped. My boob now is all at the front and I can put my arm down properly. This did take about 12 weeks though.
2) I didn’t have this at all.
3) My recon boob is higher than my normal one but this is expected as I didn’t have an uplift at the same time - I wouldn’t expect yours to be but it may be that one is more swollen than the other at the minute and they do take a long time to settle down.
4) My back and my front were totally numb to start with and to some extent still are but again this is improving all the time. I have been told that it can be up to a year before before the recon feels normal and at its best.
5) The only swelling I had was when fluid had collected, this was quite uncomfortable but relieved very quickly when I had it drained.
6) I know this feeling very well - it feels like your bra is far too tight but doesn’t improve when you take it off. I was told to massage well with cream or bio oil and do my exercises
regularly but even now my skin is still quite tight sometimes but again getting better all the time. I can only imagine how uncomfortable you must feel at the minute having 2 sides like it.
7) It is only in the last 4 weeks that I have been able to lie on my recon side but what does help is putting a pillow underneath so that your most painful bits aren’t resting on the mattress.
8) Not had this at all.
9) Again I know what you mean as I constantly feel that I want to put my shoulder back but this does make my front and back feel even tighter. I have only yesterday been looking at those posture control garments and wondering if they would help but at the minute am concentrating on exercises as again I have been told this is due to my skin not yet being stretched enough.
10) Only now am I getting back into some of my closer fitting clothes and buying new ones.
I hope the above helps but I would suggest that you make an appointment to see you breast nurse to discuss and go through all your points as you shouldn’t feel this unhappy and need some reassurance from a proffesional person. I actually saw my surgeon about a month after my op so it seems like 3 months is a long time between apts. You have however had a major operation and this is only early days.
I last saw my surgeon about 6 weeks ago and that is when he told me that it could be upto a year for my recon to soften up and feel normal as I did have some of the same concerns as you
have.
Are you having any more treatment?
Hope you feel better soon.
xx

6

Hi Max and Misha - really sympathise with you both - I had one LD last September to breast that had had Radiotherapy 4 years ago and then the other side done preventatively in March.

I think some of your symptoms are normal but would def go back before 3 months is up on some of the other things.

The swelling under the armpits is where they pull through the LD muscle and normally the end of the muscle is still attached to the back so it goes from the back under the armpit round to the new breast - so the armpit will be thicker permanently but you shouldn’t feel like your breast are under your arm - it should just be a bit thicker. Def go back to the surgeon to check the muscle is in the right place. My side that has had radiotherapy is thicker than the side that hasn’t though.

That elastic band feeling is awful - I had that too but is does goes after a while - couple of months. I felt like I couldn’t breathe properly and felt out of breath really easily. Don’t worry it will pass. Also if you have lost a lot of blood in the op you might be slightly anaemic (I was) and that can make you breathless also. My BC nurse did tell me though that if breathlessness didn’t go to get checked out for a chest infection.

The ports are awkward at first - mine are under my skin on top of my ribs - where are yours? I have got used to mine and now glad I had them for filling up - I had last infill on Monday and they look really good now. I hated them at first due to the swelling and nipple going and it is a massive adjustment. I am really impatient and found the waiting hard but after 3 months they started to look good and I am now wearing strappy tops this summer.

As for sleeping and turning over in bed - nightmare - lots of pillows and sleeping half upright helped. After 6 weeks could lie on my side but still can’t lie on my front - feels too awkward.

Bras - I just had to buy bigger for a while and I bought really supportive ones from MAS with no wires in - just cotton. I felt once I had the right bra the support made me feel more secure while healing. I also went to Primark and bought cheap bigger tops to wear for a few weeks so I felt comfortable.

It is major surgery and takes at least 3 months to feel back to normal - think you should go back to discuss positiion of breasts and the fact that you are not happy and feel awful. It is so hard emotionally to have this op let alone having physical problems as well as a result.

Hang on in there, I am now really pleased with the result but 6 months ago hated them. Just waiting of rmy nipples now. I don’t look the same as I used to but am now getting used to the new me.

Take care

Sarah x x x

7

Hi Max
I had a firth mastectomy and LD recon in 2005, then the same on my left in 2006. One side at a time was one thing but my heart goes out to you having both at once. Please do call the BCC helpline as I found it most helpful to talk through all these things with trained staff who were always very knowledgeable and helpful.
My recollection at 3 weeks post-op was that I felt miserable. I had a lot of fluid build up under my arm and round my back which needed to be drained off weekly for the first few weeks. This is quite normal and is part of the healing process. When you were in hospital it would be taken away through your drains but can still build up once these are out … the surgeon called it wobble and it felt like lieing on a waterbed. I wonder if this might be what is causing the swelling on one side of your back …
Numbness in you back is normal and I am still numb in a large part of my back but this does not cause me any problems and I still enjoy a massage.
I also have a hollows on each side of my spine where the LD muscle used to be …. The muscle is a very large one and goes from under your shoulder blades down to your pelvis/hip bone…I found sitting on hard backed chairs very uncomfortable for a long time due to the numbness/odd sensations and bony hollows … I wore a padded gilet or took an extra jumper over my shoulders to put between me and the chair.
I found the triumph tri-action bra the best but needed a bigger size and also used a bra extended … a small piece of material with hooks that increases the size of the bra round your chest … la senza used to have them. Wearing a firm bra helps to soften and mould your reconstructions but you need to be as comfy as possible too.
Funny you should say that about looking pregnant….i was the same after my second operation and think it may be partly due to the change in your posture now that those muscles have been moved. I started pilates recently to work on my posture. You may also feel your shoulder blades are sticking out away from your body, again due to the relocation of LD muscles but you can work on this when you feel better by rolling your shoulder back one at a time and trying to pull you shoulder blade towards you spine … this will get other muscles working to hold you shoulder blades against your ribs.

This is a totally huge operation and you are bound to feel miserable just now …. It is really important to get the help you need so don’t feel bad about calling the oncology nurse, or the physio, or ward or whoever will get you help and give you support!
I look back on the operations as being a bit of a nightmare but it does get better. Be good to yourself and rest!
Buff

8

Hi Max

I had a delayed LD flap recon on 4th June. I had only a small amount of swelling under my arm and it certainly never felt like my boob was under my arm - Buff is right you need to have this checked out if you are concermed. I was lucky, i never got any seroma or haematoma - I did after my mastectomy and have to take blood thinners which I am still on, so my consultant thought I would get lots of swelling this time. My consultant visited me every day in hospital, sometimes twice in the same day and I had a wound check the following week with the breast nurse as he was on a course and saw him the week after. I am also seeing him again on Tuesday so am surprised you have to wait 3 months.
I find it hard to sit, that is more painful than standing, however am able to sleep on my side now but only in the last few days has this been possible.

Maybe the swelling in your back is due to a seroma as Buff says.
I was advised to get a compression bra and boy was it tight but it helped stop any fluid forming. My boob looks great under clothes and is getting there in the flesh.

I cannot imagine what it is like to have both sides done at the same time it makes me shudder just thinking about it - possibly this is why there is more swelling - with just one side at least you have a little more mobility which always helps in recovery. As everyone keeps stressing this is major surgery - a student nurse sat through my operation and when she saw me last week she just said “no wonder you are so sore and that’s all I’m saying” that speaks for itself don’t you think?

I think you have been extremely brave - any concerns need checking out, hopefully you will do this on Monday if you havn’t already. Peace of mind is a wonderful tonic.

Take care all

Karen

9

Hi Everyone

I can now see why my surgeon will not do bi-lat LD recon at same sitting. I had my first done in January and my second 10 days ago so I guess I am felling half as sore as you are Max. I can relate to all the symptoms you describe though.

Karen - please could you tell me where you found a compression bra. I had fluid drained from my back for 6 weeks last time and I already have a collection, despite the drain being reomoved only a few days ago. More support would be so welcome, everything feels very ‘heavy’ right now.

Jackie.x

10

Many thanks to all of you for your comments. They have really helped and cheered me up no end.Glad to see a lot of you had similar problems.

Have been back to the dressings clinic at the hospital twice a week. Two of my wounds are still weeping. Is this normal at the 3 week stage? My partner has been changing my dressings daily, as does it better than the clinic! When we went on Friday my plastic surgeon was there and miraculously he actually saw me and took more photos. He said everything was going according to plan and was not unduly worried about the lumps and bumps under my arms and on my back and the hollows on my back. However, he agreed that my right boob is a lot bigger and higher than my left boob and said I need an ultra sound to see if there is fluid that needs draining off in the bigger one. Haven’t had the appointment through yet though. I haven’t had any fluid drained off since I’ve been discharged. Is this normal? I did have 8 drains whilst I was in hospital though.

Cant lie on my back in bed for longer than 1 to 2 hours as wake up in terrible pain. Hurts to lie down and sit up in bed. Cant get comfy.They discharged me with only ibuprofen and paracetamol. My doctor has since prescribed dihydrocodeine 30mg tabs. 1 to 2 tabs every 6 hours in conjunction with the other tablets. If I take the two I am terribly sick and if I only take one it does not touch the pain. They also make me very sleepy. Will need to get this sorted as I am spending half the night in pain wandering around.Don’t think I can have voltarol as I am an asthmatic and get acid reflux and stomach problems. But don’t think I should be taking ibuprofen for the same reasons, but am ok with them.

What pain killers is/was eveyone else on?

Have any of you been to see a physio therapist or are you just doing your own exercises from the breast surgery leaflet?

Misha - Glad you felt like a freak too. When do you use the V pillow? In a chair or in bed? How do they give you comfort. On way back from hosp on Fri popped in to Dunelm Mills. They had a memory foam v pillow for £30 but it was about 6" thick and seemed too bulky. Had a try out on a bed with a memory foam topper. £100 for double. Are these any good and worth forking out for?

Holly 56 - Am waiting the histology results.Have no appointment yet and has been 3 weeks since op. They have been telling me for the last 6 months that DCIS is not invasive cancer and that I shouldnt need rads or chemo. I have intermediate and high grade DCIS and according to the literature, high grade is more likely to become invasive cancer. My lymph nodes under my arms have been hurting all year and no one wanted to know. I managed to persuade them to take out some lymph nodes when they did the mastectomies, which I hope they’ve done. I asked if I could have the sentinel node biopsies and they said this wasn’t necessary, although many on this site have had this done.

I was really surprised and annoyed when 2 girls in hospital had had the sentinel node biopsies done beforehand and they only had low grade DCIS. The one girl has got to have radio and chemo as they found invasive cancer in her lymph. That puts their argument out the window doesnt it?. I keep thinking that even if the sample ones are clear it doesn’t mean they are all clear.

Lets hope everything will be fine.

Regina - will try and be more assertive but they just keep fobbing me off.
Humbug - what is a compression bra. Should I be measured yet for a bra, bearing in mind my wounds are still weeping?
Buff40 - Thank goodness you know what I mean about looking 9 months pregnant. It must be that the muscle is no longer there to support the back. My higher stomach hurts when I press it in on the right as well. Did you get this? Should I wear those knickers up to you arm pits for support?

Sarah 35- glad I will eventually be able to lie on my side.

Sorry for all the questions. Must get off now as have gone stiff perching on this computer seat.

Max xx

11

Hi all
my consultant arranged for me to get a compression bra from “amoena” - it does up at the front and is very supportive. Only problem with it was that the smallest size was a 34 and I am a 32D so my wonderful neighbour who is a seamstress took it in for me and also put velcro on the adjustable straps so that I could make it tighter over my shoulders as my consultant wanted it as tight as possible . I only need the normal hooks and eyes now. I was told to buy a size smaller as well on the cup. I had to take it to theatre with me and woke up wearing it.

Royce do one as well on justbras and there is also one on treasure chests. I have to say though that a sports bra is better for the shape of the breast this late after surgery as it has the hidden support all round - I now have one called a “w force 3” from a sports shop near me or if you put w force 3 on google you can get it on line - have to put it on over your head though.

12

sorry - clicked too early. I will be using my amoena one again (£20) when I have surgery to my other breast and do still wear that one at night as it is so supportive it is very wide at the back and the cup is not too stretchy so keeps everything in place - great for helping with the fluid build up.

Hope this helps Jackie.

Max, I think you will need to check first what you can wear although my wound was weeping for ages and I still wore the bra. I have another 2 weeks (6 weeks in total) of wearing sports/compression bra day and night.

Hope everyone is feeling much better - off to do some more excercises now - think I will be allowed to lift my arm above my head after my next consultants visit, (anyone else not allowed to do this?) will be able to reach things from my cupboards all by myself yahoo.

take care everyone

Karen
xxxxxxxxxxx

13

Hi Max,

I use my V pillow in bed. Putting if on top of a normal pillow, creates a hollow to put my shoulder in with out any pressure so I can get off to sleep. I think other people have said you can use it around the waist to raise up your body, or to support your arms. Also, it is great to use to sit up and read - I could have done with this years ago. I paid £9 for mine from a local dept store. Hope this helps.

Best Wishes
Misha

14

Sorry Louise

So involved in trying to help, I forgot we can’t put the actual web site names on there for the bras.

You will be able to find them though if you just google them.

SORRY!!

Karen

15

Misha

Fantastic advice!

My sister has loaned me her v pillow (didn’t even know she had one until I mentioned it after reading your comment) and what a godsend, it is great for sitting on the sofa.

Karen.

16

Hi there

I had my mastectomy and immediate LD recon 6 weeks ago. Like Max I also had a bulge under my arm and a hollow in my back near my shoulder blade. The bulge has definately reduced although I don’t think it will go completely, the hollow has also filled out. I think I was expecting too much too soon, to look and feel as I did before. My recon breast had some fluid and has just started to look like the other one, but I am happy with the result. I have had a lot of problems with the back fluid leaking out of my back wound and my chemo has been delayed until it has healed. I had it re stitched on Monday, due to start chemo next Tues but will be delayed if it hasn’t healed by next Monday.

I am having the other breast done early next year, as when they did the biopsy in addition to the lump they found a large area of DCIS that hadn’t been picked up on the mammogram or ultrasound. Better safe than sorry!!.

Have been told not to do my exercises for a while until stitches have healed, but I am starting to feel really tight so I massage under my arm on a night while I am sat to stretch the muscle out.

Am off to buy a v pillow ( good tip ) as I also find it hard sitting and just can’t find a comfortable position.

Take care

Ann

xxx