Anyone had necrosis??

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1

Hi,

I had a mastectomy and ld recon 15/9. I have patches of necrosis on the front and the back wounds. It is nearly 5 weeks now since the op and the healing is phenominally slow. I still have a big hole in my back where the centre part of the incision won’t close and patches of necrosis at the edge. I’ve been told to be patient but when you havent been able to shower for 5 WEEKS and can see no improvement then its damn hard to be patient!

My back wound starts to smell rank a day or two after dressings and i’m told thats the dead flesh. I can’t even begin to explain how disgusted that makes me feel about myself.

Has anyone else had necrosis? How long did it take to heal? Is it normal to smell bad?

The doc said its very unusual to get necrosis, which just makes me feel more of a wierdo.

Lou

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Hi Louise,

I had my mx and LD recon on the 22/9 and have too been told that i have a bit of necrosis on my back. I’m just coming up to 4 weeks post on and frustrated by the slow healing. My “nipple” would has only just stopped oozing blood and fluid from a secondary bleed 2 weeks post op. The worst bit on my back is the centre part but I have to say I don’t have a hole. There is just a big scab there with reddened skin around it - the rest of my scar the scab has practically fallen off. I have had showers and baths (though no deep ones over the level of my wounds when lying down since I had the secondary bleed) and haven’t been told I shouldn’t. I dont have any dressings on any more and the back one was taken off 2 weeks ago. I don’t smell either (I don’t think) though I did stink when I had the dressings on but it was a mix of iodine and sweat I think but it made me feel quite ick.

I don’t think from what my docs have said necrosis is unusual in fact I think its quite common as I was told it was a risk prior to surgery and no-one has been surprised that I have some.

Do you smoke? I do and was told that it was not a good thing so gave up prior to the op to give me a better chance of healing. I started again about 10 days post surgery and got a ticking off at the hospital re healing so quit again but fell off the wagon about 3 days ago after my nipple finally stopped.

Sorry, just realised that I am not giving you any advice or hope, just my tale.

Perhaps speak to your BCN re showering and the dressings - do you still need them on because of the hole? Surely your dressings are waterproof so you can at least shower without getting the wound wet. Have you seen your surgeon regularly since the op?

Have they said what they will do if it wont heal? When I went to see my surgeon on Weds he commented on my necrosis and I got the feeling something may happen if it doesn’t heal but I dont think he’s unduly worried at this time.

Witter, witter, witter, don’t suppose any of this helps, xx

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Oh, an additional thought, is your skin around the edges pink/red cause I think thats a good sign as there is still blood flowing to the area and attempting to heal whereas no redness I think means skin dying? How big is your hole?

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Hi ostrich,

We both have dr rayter and that feeling that ‘something may happen if it doesnt heal’ is well founded! The BCN have told me that he is a ‘picker’. He gets impatient when the necrosis is not coming away and likes to pick off the dead bits with a scalpel!

I still have drssings front and back. The back one to cover the hole (its opened so wide and deep you can see the internal stiches) and the front one as it has quite alot of necrosis, none of which has come off. (BCN told me that when i see dr rayter next thurs he was very likely to ‘pick’)

I think the reason they told me the necrosis was unusual was because ive never smoked and am in my 20’s, 2 things that normally mean little chance of getting it.

The reason im fed up is that when i was told i had the all clear and could get on with my life thats what i wanted to do. MY last wounds healed up in 3 weeks but Dr r said it could be a few months before these wounds heal. I cant swim, go to the gym or shower, or even have the pysio i need to get my arm movement back. (i can do some of the pysio exercises, but she wants to work on my central back and can’t until the hole has healed!!)

Just out of interest who are your BCN nurses? I see lorna, lorraine or angie.

lou

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I got some necrosis and I also don’t smoke, I am afraid that it is the luck of the draw. I ended up with a one inch wide hole in the side of my breast after my second op - the consultant had told me he could improve the scar, it wasn’t much of an improvement.

I was told the only way now to make it look better is a skin graft. I preferred the ugly scar, at least it’s gone white.

My surgery was five years ago now but I still feel annoyed, I got asked what I’d done to get the wound infection etc. Nothing was the answer, I blamed the surgeon of course. and he blamed me.

Mole

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I went to a support group a few weeks ago and a woman showed me her scar from an infected wound. Granted this had been 10 years ago but i was amazed how it looked, completeley flat and pale and looked like discolouration until you got very close. I don’t really mind the increased area of scar tissue, right now i’d be grateful for any scar tissue, i just want it to HEAL!

Mole, how long did it take for yours to heal?

lou x

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Hi Lou,

I forgot we are both under Mr Rayter, I end up going back to see him on a Weds otherwise we could have met in clinic!! I feel very lucky as I dont have a hole, just a bit of my scar where the scab is wider than the rest - ie either end is a thin line and the middle bit about a centimetre wide but it is scabbed over just pink on the edges. I dont want to make you feel more uck than you do so I will say nothing re seeing your internal stitches but I certainly wont moan about my wound anymore! Thanks for warning me re the picking!!! I dont think I want to be picked at as I said I have a scab and I think the pink bits are a healthy sign!

I had a bit of issue with my front one where a bit of scab fell off leaving a gap between the old boob skin and the new nipple and this is where some of my oozing came from but luckily another scab has now formed. I expect I will end up with a bit of a scar there but its about the size of a tic tac so all in all I think I am doing very well.

Feel bad for you and Mole as I am a smoker and don’t seem to be having the troubles you are having!!

Will he not re-stitch the hole together so it has a chance of healing? I’m no surgeon but surely that makes more sense than leaving it gaping open. I suppose the picking is to get rid of the dead skin leaving new skin which will attempt to heal whereas dead skin wont so maybe picking isn’t such a bad thing. I think the reason for the back issue is because they dont cut a straight line but have to cut out a bit to do your new nipple with and then pull it down and together to join up so its not surprising that there are some issues with the back. I actually have/had quite big nipples - about 4cms across the areola and its a nice big circle of back skin he’s put for my new nipple so he must have had to take quite a bit of back.

Sorry, disjointed post, bit rambling, just spilling thoughts out.

I do hope you begin to heal soon though honey. Is there anything herbal you can take?

I see Lorraine usually but have seen Angie I think (does she have short dark hair)?

xxx

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Hi,

I had fat necrosis after my diep operation, the smell of rotten flesh was terrible, even my family could smell it, I was so aware of it that I wouldnt leave the house, (thought dogs might chase me) I can honestly say it was one of the lowest points of my whole cancer treatment and I was very down at that time, I had about two weeks of it, before my surgeon would operate to remove it again, not because he couldnt fit me in, just because (always remember these words when I was on the phone every other day) “we need to wait until all the necrosis has declared itself”, I was recomended to use silver dressings (yes dressings with real silver in them as they absorbed the smell), I ordered them from boots directly and they really helped.

Glad to say that was 2.5 years ago and a mere blip in my memory, everything healed and looks fab now. Hang on in there, it will get better.

Good Luck
Jo

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Hi Jo,

I know this isn’t my thread but I have to ask - “declared itself” - as what??? A Tory? On your side? In the game? LOL!!!

I have also heard that silver is good for healing - I bought a post surgery bra from Royce with silver in (though still cant wear it) and I know that silver plasters are sold at Boots and are supposed to be really good at healing cuts etc - may well be worth a try?

x

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I had a tram flap 4 weeks ago and the wound is not healing in bits (the tummy bit) My nurse uses silver bandages

louise xx

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my wound took roughly one month to heal with daily visits to Barts hospital where they got fed up by the sight of me. Each day they packed it with gel tape until it got small enough to not need this. Then I put dressings over it myself.

I went back to work once I didn’t have to keep going up to the hospital.

Mole

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Mystery solved! The slow healing is due to the fct i have had an infection in the back wound for 4 WEEKS! despite 3 swabs i only found out results on tues. At least i feel like i’m not going mad anymore. I knew it was getting worse! Now i’m on antibiotics and i’m told the healing should dramatically pick up the pace now.

My surgeon also ripped all the necrosis off the front today, it didnthurt and also looks pretty good. Lots of healing left to do but i feel like there is progress at last.

Thank you Jo, it looks like you were right!

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Louise, glad to hear it went well with your necrosis and healing is on the horizon! I can’t remember what other thread I posted on but did you find out why you hadn’t been told prior to now and given anti biotics?

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Ah, dont worry, just found the other thread and will read your post there, ignore me, x

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Hi Louise79,
I have just read your story- I can’t believe what you have been through and really hope that things pick up from now on. I was just going to add that are you eating well? wound healing relies heavily on your diet and calories - you need to be eating extra calories (at least another 500) to promote good wound healing-now is the time to enjoy yourself! Good luck with eveything and I keep my fingers crossed that you are now well on the way to recovery !
Anne XX
Anne

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Hi Louise,

Just wanted to see how you are now. Is your wound healing better?

I have a vested interest in asking. As you know we were both treated by the same surgeon but he decided not to pick at my back wound, thank goodness! I am 5 and a half weeks post surgery, started my FEC chemo on Tuesday and on Wednesday night - ta da! - my back wound has opened up! Couldn’t see Mr Rayter as he is on annual leave, dont want to go to the BRI next week when my immunity will be low (all them icky people) and worried! I spoke to Angie who sent me to my GP and practice nurse who said it had de-somethinged - stitches come loose and it looked like only the top layer had come undone but there appears to be an infection. They have swabbed it, cleaned it, dressed it, and given me huge (650mg) penicillin for a week and I am going back to see the nurse on Monday. I am very worried now about how long it will take to “heal from the inside out” as they say, particularly going through chemo and being less bug resistant so hoped you could give me some positive news on how your back is doing?

O, xx

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Hi Ostrich,

My wounds are doing really well. The back wound healed more in the week after the antibiotics than the previous 5 weeks combined! I am still not convinced all the infection is gone as i have been feeling a little rough the last 2 days, but they took a swab on thurs so hopefully i’m wrong.

I’m sorry your wound has opened up, it really scared me when mine happened, but try no to panic. Can you see the internal stiches, or is it just a flesh opening? Do you have any necrosis on the wound?

I presume they’ve put you on penecillin as its a broad spectrum antibiotic that tackles most things You need to chase up the swab results. Sometimes they can take a week as they grow cultures on it (whatever that means!) but when they know the exact bug thats infecting you they can often give you a more specific antibiotic to target the bugger! Don’t presume they will tell you this info, i did and as you know waited weeeeks to find out the swab results!

I know it sounds weird, but i would strongly advise that you take a digital camera to the docs and get the nurse to take good photos. At first i relied on my OH looking at my back wound as i couldnt see it properly (obviously!) but when he went back to work i had the dressings regularly changed at my docs surgery. The problem was that it was a different nurse every time. The wound looked gross and on a couple of occasios the nurses panicked a little as they thought it looked ‘wrong’, got a doc etc and it really stressed me out. Since taking regular photos, i can keep track of how its healing and what it looks like and more importantly i can show whoever is doing the dressings so they can see what it looked like previously, since then dressing changes have been very calm!

I also invested in a decent thermometer. The doc said that monitoring my temp to check for fevers would be the clearest indication of the infection worsening, i’ve found it very reasurring as several times i’ve convinced myself i feel awful and have a fever…then found my temp to be totally normal and calmed down! i dont know if this will b as applicable to you as i’m not sure if the chemo may give you feverish side effects?

I know you don’t want to travel to BRI when immunity is low, but i have to say that the BCN’s are brilliant. THey are far more expert on these wounds than regular docs and nurses as they see them every day. I still see them once a week o change my dressings as they give me peace of mind and when they are clearly not worried about my wound then i’m not worried!

It may well take longer to get rid of the infection as you’re on chemo, but it won’t cause you pain. The main reason i got so low with mine was because i knew it wasnt getting better and felt fobbed off by the docs and nurses. As sooon as i found out it was infected my mood lifted as there was something i could do about it and the improvement has been pretty dramatic.

Sorry for rambling, i’ve just realised that this si really long! Let me know how you get on.

lou xxxxxxxxx

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Hi Lou,

Really good to hear from you!

I hadn’t thought about the camera idea, sounds uck actually seeing it but in some ways it would be reassuring to see how its looking as at the moment I can only imagine! I can’t see the internal stitches but then I only looked once and ran to my OH who stuck a dressing on it. The GP and nurse said they thought that the stitches had come loose and I think its only the outer stitches but then I don’t know if the GP and nurse really know what they are looking at, as you say its not something they see every day.

I am not sure whether the BCN in Weston would be any use either as they don’t do recon here so I may have to brave the trip to Bristol.

My back is much more sore than it was before I went to the docs and they aren’t changing the dressing until tomorrow. Part of me is very worried about what is going on under the dressing and whether the stuff they decided to put on to dissolve what was left of the scab was a good idea or not. I feel a bit achy and fluey and have horrid back ache and pain but keep telling myself perhaps its a good thing!?!

I have been keeping an eye on my temp as you are supposed to be vigilant on chemo anyhow and go to hosp at the first sign of a temp over 38 degrees.

I am trying to be more positive that maybe it was an unspotted infection that was stopping it healing before and now it will heal but I will take a look later (or at least get OH to look).

They did take a swab and said it would take about 10 days to grow the culture so will try to remember to chase it up and have resolved to at least ring Lorraine tomorrow and see if she wants me to trek to Bristol.

I seem to have no time between feeling ill, going to docs, hospitals etc!!

Thanks for your advice, xxx much love and healing, xxx

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Hi Louise,

Well just went to see the nurse who said its not looking good and is deeper than the top layer and I should go back and see Mr Rayter. She took a photo for me and I have to say I am horrified. It looks awful. Full of yellow uck, about an inch by half and inch with very red and angry edges. My poor 10 year old was nearly sick. A week ago it was a scab and seemed to be doing very nicely - I can’t think where I picked this infection up from. It hurts too since I went to the doctors last week and I can’t sleep on my back anymore so am back to just sleeping on one side.

Lorraine has arranged for me to see Mr Rayter on Weds and I am hopeful he can do something be it stitches or what - anything! I am going insane! Its 6 weeks post op and 1 week post first FEC and I am feeling so low. I keep crying all the time and wish I’d never gone to the doctors about the bleeding lump. Deep bubbly baths, femininity, feeling well etc all seem an impossible dream added to the fact that I am worried that due to my low immunity I may not be able to fight this infection as well as I could and that my kimo will be delayed and this will go on forever!

Sorry for the rant, thought you might understand how I feel, xx

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Hi Ostrich
Don’t worry. I had a wound infection on my abdomen and had to go back into surgery for a wash out and was then told they would leave the wound open! Panic or what. It was about 5 cms long!I was told it was important to shower and let the shower water really wash the wound out daily before dressings were applied. I was paranoid about reinfection and obsessed with checking that the nurses had sterile gloves on and didn’t leave the wound uncovered whilst they faffed around with the new dressings. The whole thing took about 6 weeks to draw together healing from the bottom upwards. The district nurses came in every day to dress it after I was discharged and I also went to the plastics dressings clinic. They also used the silver dressing on me and we were all amazed how quickly the wound pulled together.
Don’t despair, I’m sure it will be alright. Just be patient and make sure nobody changes your dressings without being extremely careful about keeping everything sterile.
lotty