Bilateral Mastectomy with Immediate TRAM reconstruction

I would like to share my experiences with anyone who is considering this surgery or has already had it and is worrying about anything. I underwent a bilateral mastectomy on 24th November with immediate TRAM flap reconstruction. The plan was that the free flap method would be used. However; because of some anomaly with my blood vessels under my left arm that side was done with a pedicled flap instead. My surgeon also did a breast reduction at the same time. I was in theatre for around 10.5 hours. I can honestly say that I haven’t had much pain; more discomfort really and quite manageable with the painkillers they gave me every four hours. I spent the first day in bed sleeping but was helped out of bed on the second day and had my catheter removed. I had a total of 5 drains in place and these were all removed after 5 days. The worst part of the procedure was being kept at a constant 80 degrees which my consultant insisted upon to keep my blood vessels dilated. I could have come home on day 6 but we had heavy snow so was kept in a further 6 days. I am quite glad about that because I didn’t feel strong enough to come home and was worried I wouldn’t be able to manage as I live alone. The first time I saw my new breasts I was very impressed as they looked small and firm if somewhat bruised. There was a small skin disc where the nipples used to be which looked really neat. Unfortunately on day three these discs began to change colour and went dark red and by day 6 they were purple. I felt very panicky about this but my consultant said that he wasn’t too concerned as there was capillary refill and the actual breast tissue was warm and soft. By day 10 this refill could no longer be seen in the left one as the staining was too dark. There was still a small area of pink skin on the right one. My tummy scar is healing well as far as I know; there is certainly no staining on the dressing. I am due to return to the dressings clinic on Monday and I can’t wait because the purple skin has now gone hard and very dark red (almost black), there is a slight bloody discharge from both sides but nothing major. The breasts are still warm and soft but I don’t see how this hard stuff (I think it is called eschar) can recover although the specialist nurse when I spoke to her said that we must just hold our nerve because she thinks there will be viable tissue underneath it. If anyone else has had this problem following surgery I’d be grateful if you would share your experience with me. Meanwhile I will update on Monday after I have been to the clinic.

Hi Suzieb
Thanks for sharing your story. Its helpful to have an honest account, with the good and not so good.
Im different from you, as in I had my MX last Oct and Im desperately waiting to get an appt for my TRAM early next year.
I too live alone and understand the worries about coping. My sis has offered to come and stay for a week or so, as I dont have family here, so that should help.
Good to hear about the pain being bearable-I was really surprised I didn’t suffer much pain at all after my MX, so glad it seems to be similar for the tram.
I have done lots of research about the op, but still feel quite anxious about it all, especially the success of the grafted breast. I was told by the PS about the temp they keep you in after surgery-not looking forward to that much, but hopefully bearable.
Hope your Mon appt goes well and look forward to your next ‘installment’ !
Cathie

Well I had my appointment with the dressings clinic yesterday and had my adhesive dressings removed and stitches clipped. Now they should dissolve. I have been given gauze dressings to pop inside my knickers which feel a lot more comfy than the tight adhesive ones. The tummy scar looks really neat and is literally at the top of my pubic area so I’m pleased about that. My tummy button feels quite high but it is central and a nice shape. I’ve been told to keep an eye on it because I am diabetic, although fairly well controlled at the moment. The ‘breasts’ are still warm and the specialist nurse said that the flaps have by no means failed. They do feel rather firm though but I am guessing this is because they are still very bruised and probably a bit swollen. She again said we must hold our nerve and wait and watch. We have to wait for the wounds to demarcate apparently so they can see what is viable skin and what is not. On the right skin disc there is about 25% pink skin and some of the black stuff is beginning to lift at the edges. The left one is nice and pink where it was joined to the breast envelope and the nurse thinks this is an encouraging sign; apart from this though the whole disc is black. These central areas have sunken in a bit which isn’t quite the cosmetic outcome I had hoped for. The nurse said that they will probably stay like that but that in time this can be revised. She said to remember that these are not breasts and never will be, they are just a filling for the remaining breast envelope. Their aim is to achieve a cosmetic result which resembles a natural breast as closely as possible. I have been given some Bactigras dressings to place over each skin disc. These are gauze impregnated with paraffin and Chlorhexidine acetate antiseptic. Then I have to put more loose gauze dressing over the top of that to absorb any discharge. There isn’t much though; just a slight staining each day. I can have a shower with a mild baby soap now which is a relief. Yesterday I managed without pain killers all day and just took a Tramadol at night. I have an appointment on Friday with the plastic surgeon so will update again after that. I hope none of this is putting you off having the operation Cathie, I was told yesterday that immediate reconstructions like I had the skin does sometimes struggle because of the small size of the patches. Because yours is a delayed recon it will be a larger skin patch and these do not get compromised so easily.

I saw the consultant yesterday and he seemed very positive. He feels that the black eschars are no reflection on what is going on in the actual ‘breast’. He has asked me to keep dressing the wounds but every other day rather than every day. He says that the blackened hard dead skin will begin to lift at the edges and gradually be replaced by pink skin. He indicated this would take weeks rather than days. He says they should heal from the outer edge in. I had this dreadful feeling that when the eschars fell off there would just be holes with my new ‘breast’ fat hanging out! Apparently this will not be the case. I also asked him about the firmness and he said that this was probably a little fat necrosis and would soften in time. He has given me more dressings for my tummy button and says it should be okay. My next appointment is in 3 weeks time so I will post again then unless something happens in the meantime.

I had my appointment on Friday with the consultant and again he seemed unconcerned with the situation. I am getting more concerned as time goes by. I have still got an area of yellow slough in my tummy button and if I cover it it stays yellow and soft but if I expose it it goes crusty and greenish. I just don’t know what to do with it but it isn’t getting any better. Likewise a small area of the long incision on my lower abdomen has refused to close up and also has the same yellow slough in it. I am getting quite depressed about it all now. As regards the black eschars on the ‘breasts’, they seem to have thickened and are curling a little at the edges. The tissue that is visible underneath is not what I expected. I thought it would be nice fresh pink skin like underneath a scab but it isn’t. It’s kind of greyish and slimy looking. A faint smell has developed now and I don’t like this at all. I don’t think anyone else but me can smell it and it isn’t actually offensive but just not nice. He did mention to his registrar that there is a possibility he may do some small skin grafts at some point. That can’t come soon enough for me as I feel dirty with all these unhealed parts of me. In general though I feel quite fit and well and am only suffering a bit of discomfort now in my midriff - usually if I sit or stand for too long. I have taken to walking most days and have even used my Wii Fit a few times to do some of the less strenuous exercises. I started driving again last week which has given me a tremendous sense of liberation now I don’t have to rely on my friends to take me places. I have another appointment on the 21st to see the specialist nurse in the dressings clinic so I’m hoping she will be able to give me some advice about the state of play. Will keep you posted and please if anyone has suffered anything similar could you either post on here or send me a private message. Thanks

My appointment with the consultant has been brought forward to tomorrow thankfully. I really don’t think I’d have made it through. The smell is really vile now and the dead tissue has almost lifted off the left side which is causing more bad smelling seepage. I do hope they can do something for me tomorrow because I can’t carry on like this for much longer. One of the nurses at the dressings clinic said they may consider negative pressure dressings and a wound vac. I don’t know quite how this will fit in with me returning to work which I need to do before 21st March as my pay runs out. Does anyone know how long you have to have the wound vac for?

just found your posts as due a double recon soon. Hope you get sorted at your appointment, good luck xx

Lets hope you have better luck than me! I wish you all the very best Lisa.Don’t let my story scare you I’m sure I’m the exception rather than the rule.

To continue: By the time I had my appointment with the consultant last Wednesday I was literally leaking onto the floor when my dressings were taken off. Anyway it was decided that a registrar would remove the black bits and apply a wound vac. I was awake for the procedure but didnt watch. It didn’t hurt but i did go a bit funny with listening to all the snipping and cutting which went on for around an hour. Once he’d got rid off all the dead stuff, leaving some pretty significant hollows, he lined the cavities with non stick gauze and cut foam pieces to exactly fit the wounds. The foam was covered with ‘drape’ to form an airtight seal and a tiny hole was cut over which the pads with tubing were fixed. Tube was connected to a wound vac machine and when it was switched on The foam was drawn into the wound. And there my nightmare weekend began! The machine began to malfunction about 2hours after I got home but I managed to keep it going till 9.45pm by switching it on and off. Then it just died. I ended up in A&E but they couldn’t find anyone who could change the dressings until Sat afternoon at about 4pm. I was back at the hospital again on Sunday; the machine having died again. By now I was so upset because I could feel the infection getting worse due to the stagnating exudate. I had by now developed E-coli and a strep infection in the wounds. They couldn’t locate another machine and could only supply me with lots of absorbent pads to cope with the leakage and the number of another hospital where they had a dressings clinic on Monday. Finally got a machine which mostly works although it alarms every now and again and stops when it thinks the canister is full. It isn’t full and I only have one canister left now. I have an appointment in the morning so I just need to keep it going until then. I am so stressed I can’t explain. I’m just waiting for the alarm to go off all the time and worrying what I’ll do if I can’t get it going again.

I do hope that I can post on here with some positive news soon!

Dear Suzie,

Oh you poor lady, as if BC isn’t bad enough…I really hope you get on the road to recovery soon. I really wany to thank you for being so brave and realistic by posting such a detailed and informative account of your recon treatment. I will keep my fingers crossed for you, Lisa.xx

Wow Suzie, it sounds awful, really hope they can do something better for you tomorrow, you shouldn’t be left like that it’s awful and must be really stressful, even painful and very nerve racking.

Thinking of you
Lisa xx

Bless you both Lisa’s and thank you for your good wishes. I will keep posting as long as I’m not upsetting anyone. I wish I could have found something like this BEFORE I had my surgery. I had my wound vac dressings changed yesterday and have had a few hairy moments with the machine. I saw the consultant who said he was encouraged by what he saw. Apparently his registrar had told him my fat necrosis was right down to the chest wall on both sides. He said he could see some healthy granulation tissue in the cavities and was pleased about that. His plan is that he will get me into hospital as soon as all the necrosis and infection is gone and stitch up the holes with a purse string stitch. At a later date he will ‘rearrange’ the little bit of fat that is left to make a more acceptable rounder breast shape. The way things are going I don’t think there is going to be much left at all. I look almost completely flat chested already and stuff is still draining out. Also now in my right side I have developed a couple of very painful hard areas. These are areas of fat necrosis according to my consultant. Am due to go again tomorrow to the dressings clinic and not sure if consultant will pop in to see me or not. Lets hope I don’t have another nightmare weekend like last. Best wishes all xxx

Dear Suzie,

So good to hear that you are at last getting some proper treatment. I looked on this site because I am really undecided about recon myself. I don’t normally bother to go on this site but for once I thought I’d have a look around…
Since reading your “blog” and reading it to my partner you have been in our thoughts, we all hope and wish that you will soon start getting ontop of this. I/we really admire your strength in all of this, it really does come across in your postings. So we are sending you all our good wishes and all our positive thoughts, with love, Lisa (and family).xxx

Thanks Lisa for your good wishes and thoughts, they are much appreciated. I think mine is one of the more extreme case scenarios so before you make a decision about your surgery I’d advise research, research and more research. Look at flap failure data on the internet and also see if you can find out the success rate of your particular surgeon. Also bear in mind that my healing process is possibly compromised by type II Diabetes (although under excellent control) and the fact that I’ve lost so much weight so quickly due to not being able to eat (the smell of necrotising tissue and infection!). I went to the dressings clinic yesterday and they were really pleased because the wounds had shrunk by about half and had produced nice healthy granulation tissue. I go back on Tuesday and hopefully will see the consultant who I think will be quite surprised; the nursing staff certainly were. I don’t really feel strong Lisa but I’m doing my best. Some days I could just stick my head under the pillow and howl all day long. Thanks again for your thoughts.
xxx

Dear Suzie,

Don’t worry about me, I will make my mind up, eventually!
I will keep my fingers crossed that you have better news this week. However I do insist that YOU ARE STRONG! I so admire the way you have “blogged” about your recon.
Best wishes. xxx

Nothing much to report at present. I didn’t see the consultant on Tuesday as he wasn’t there and he has also cancelled his clinic for Friday as he is ill. So I guess it will just be a dressings change with the wound care nurse. Can’t wait to get rid of this horrible machine!

I saw the consultant on Friday and he was quite pleased with the way things are looking. The holes are getting smaller and smaller and the tissue is building up from the wound bed. There is more granulation tissue and even the beginnings of some skin. He says he would prefer the cavities to close naturally rather than closing them surgically and would like the wound vac to stay on for a while longer. He said the closed result would be a bit bumpy but this can hopefully be sorted out later on. As regards revision of what ‘breast’ tissue remains,that will be at least 6 months away because he wants the breast mound to soften; which he is confident it will do in time because he says there is a blood supply to the remaining tissue. He indicated that small implants may be necessary to achieve a nicer shape. I’m not sure about this because the reason I had this particular procedure was to avoid implants. Anyway at least I have 6 months to make up my mind.

Looks like or sounds like you are turning a corner. I will keep my fingers crossed for you. You are such a brave lady, I wish you well.xxx

hi couldnt find this post - glad things are improving a little, and that things speed up so you can get that wound vac off.

Im due to have similar procedure in 2 months - gulp xx

Dear Suzieb, I hope things are going better for you now, and that you get the result you wanted even if that takes a while longer. I do feel for you so much. I wanted to thank you for putting your experiences on here - I was certain I wanted a recon initially, now having researched all the options on line I’m pretty certain I don’t. I know you say that your experiences are extreme, but that doesn’t make them unimportant - it’s exactly the possibility of infection etc that we all need to know about. So thank you again, and very best wishes for your recovery. Lynne

Just a little update. I have noticed that I now have one ‘breast’ significantly bigger and lower on my chest than the other one. Not quite the look I was aiming for! Hopefuly this will get sorted out in a few months when the consultant does some revision. I got the wound vac off last Friday and have just got dressings on now. The nurse made wicks from a capillary action dressing called Sumar Max I think and put them in the cavities. She then laid two pieces of this dressing over the wicks and topped it will an Allevyn adhesive dressing. I felt much freer without the machine and even went shopping. As there is no dressings clinic on a Monday I had to wait until Tuesday to get them changed and by then they had started to seep liquid through and I was smelling which I didn’t like. However the nurse was pleased with the healing process and tomorrow when I go to for my appointment I will ask if they can put another dressing over so that I don’t get any leaks. I also see the consultant again tomorrow so will update again if I learn anything new.