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Is there anyone else out there like me.

18 REPLIES 18
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Re: Is there anyone else out there like me.

Saw Plastic Surgeon today, great news the biopsy was clear. She fitted me up with a wound VAC and was very optimistic about the success they have had with it. Just keeping my fingers crossed it works for me. Bit of a bind having to carry it round 24/7 but if it works it will have been worth it. Thanks to everyone that has kept me sane during the last week.

Re: Is there anyone else out there like me.

Hi Dib

If you go to the reconstructive surgery section there are several recent threads on there that give details/experiences about the LD (back muscle) op. I've put up a couple of long posts in response to people's queries.

good luck!

D

Re: Is there anyone else out there like me.

hiya to you all,I havent posted since the end of last year when i had a lumpectomy,then radiotherapy.I have now been tested positive for brca1 gene so have opted for double mx which is planned for late august.I am having reconstruction with muscle taken from my back.Has anyone out there had this particular op? i would be interested in your views.thanx very much
Dib

Re: Is there anyone else out there like me.

Hi Pam

I live in Shropshire, where I was dx. For various reasons, including so I could stay with my sis after, I had my mx and recon in Suffolk. Then transferred back to Shrop for aftercare, chemo etc.

In both hosps they have a policy of having MDT meetings after surgery before deciding the next course of action re treatment. Means the surgeon can discuss face-2-face with the onc what he found, etc. So yours is perfectly normal.

Really sorry you're having so many probs and hope they resolve soon - sending hugs!

Dx

PS. It was also reassuring that both suffolk and shrop recommended the same treatment regime!

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Re: Is there anyone else out there like me.

Not in so much discomfort today, actually managed to get a sports bra on. Still worried about the MDT meeting,as it will be just 2 weeks after my last surgery (normally the time for biopsy results).
I should be re-assured I am being monitored, but never heard of MDT`s after any surgery when you have had breast cancer. Tried to get hold of BC nurse but can`t seem to get a reply.

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Re: Is there anyone else out there like me.

Hi pam

There is no point in me saying don't worry because you will. I know at my hospital that they have MDT meeting for all sorts of reasons not necessesarily bad ones.

Take care

Andie

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Re: Is there anyone else out there like me.

Still leaking, skin driving me mad its so sore, had the fan aimed at it for a few hours to cool it. I see the Plastic surgeon on Wednesday, to see hopefully the way forward. Today I rang Plastic surgery as when I was there on Saturday they couldn`t find my notes and I wanted to make sure they were there for my appointment. I was told they had been sent to another department for an MDT meeting taking place this Thursday. I am now worried sick that there is something wrong, I had a biopsy last October which was fine, on my last surgery 10 days ago the Plastic Surgeon told me she would do a biopsy I have now worked myself up thinking the worst. I rang the breast surgeons secretary and she told me there is always an MDT after any surgery. I`ve never heard of this before. I just feel so down, all I want is my wound to heal.

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Re: Is there anyone else out there like me.

Thanks for all your good wishes, its really appreciated. This site is my saviour.
Georgef. Great to hear from you about your experience, nice to know the VAC was a success. I don`t feel so isolated after your posting. Just hoping it can be done next week.xx

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Re: Is there anyone else out there like me.

big hugs pam...chin up, it WILL get better and your now finally on the right road!!! xx

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Re: Is there anyone else out there like me.

I had vac therapy last year and it worked really well.Like you I had surery to remove bumps on scar. Wound seemed to be healing really well but started to breakdown and ended up with smelly gunge pouring out. Had 4-5 months of all sorts of dressings including bags had all sorts of infections and it really drained the energy out of me. Had the vac 5 weeks and it was fab. The dressings are like cling film and they pack the wound with a type of foam. It didn't cause any skin irritation on me. Had to get the dressing changed every other day but needed the standard ones done anyway. The machine has a rechargable battery which will last all day if you plug it in overnight. Its light enough to carry around so you can get on with your life. The tubing is long enough to let you have a shower and leave the machine out of the wet. Ater the vac the wound was dry and after a couple more weeks it scabbed over. Took a few months more to recover but am figting fit now. Hope you get as good a result as I did. I think it maybe saved my life.

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Re: Is there anyone else out there like me.

Oh Pam im so sorry to hear your having such a bad time ((((HUGS))) to you, I hope they soon get this sorted for you & that you soon fel much better
lots of love to you
Mekala x

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Re: Is there anyone else out there like me.

OH had to take me back to hospital this morning, couldn`t stand the soreness and fluid leaking like a tap coninuously and ended up in tears, they have now put a bag on to the wound to catch the fluid and hopefully ease the soreness. Just hoping they can fit me with a VAC in the next week.
xx

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Re: Is there anyone else out there like me.

Hi Pam

My story is different to yours but similar and it did resolve in the end.

After my MX i suffered badly with seromas. They were drained many times over a period of 6 months but persisted. Eventually the seroma became infected and I was admitted back to surgery as an emergency because of the risk of septicemia. The ensuing wound could not be stitched because of the infection but was packed and dressed by my practice nurse 3 times a week.I know your frustration because it actually took 10 months to heal.The nurse eventually gave my husband instructions how to do it and provided us with all the necessary dressing, packing and antiseptics. It finally began to heal when I saw a different registrar who ordered a course of Silver nitrate to burn away the top layer of the wound and kick start my body into healing again. From then on it slowly healed although it has left me I can only describe as 'disfigured'. I have been offered revision surgery to sort out the mess but I have refused- the thought of another wound which may or may not heal properly appalls me.

Good Luck, Let us know how you get on

Andie

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Re: Is there anyone else out there like me.

Thanks Manny, I am willing to try anything, just worried about having more sticky dressings on my very red and sore skin. I have looked at video on the internet on how it works and it looks favourable.
xx

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Re: Is there anyone else out there like me.

Firstly can I send you some hugs and support? It sounds as though this has been a dreadful wound complication for you and I am so sorry that you have had to go through that.

I have no first hand experience of this but I have seen people use vac therapy with a GREAT deal of success. I have never seen it used for a breast patient, but we used to use them a lot for our vascular patients and for difficult wounds after other types of surgery.

I can't point you in the direction of anyone who can tell you what happened for you - but it certainly can and does work.

xxxx

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Re: Is there anyone else out there like me.

Thanks Trish 1968 for your wishes, I will keep updating. Deed, you have given me some hope, I only used Manuka honey for 3 weeks and as I said there was some improvement. Maybe I should have insisted it being used longer. At the moment I`m sat with no dressings on leaving it exposed to the air to help cool my very red and sore skin (not a pretty sight).

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Re: Is there anyone else out there like me.

pam my story isnt exactly the same as yours but does involve faaar to much liquid and plenty of manuka honey!!
I had an ld flap with implant but my flap didnt want to heal. the fluid evenutually built up and the "plasters" they were putting on were getting bigger and bigger until eventually it was like niagara falls. I was admitted to hospital where the nurses werent actually sure what to do with me. They were actually strapping me up like a mummy with plenty of padding and bandages - i just sat and cried and cried. I was put on antibiotics as a precaution on 2 occassions. In the end i was rushed back into theatre as the surrounding skin was black (dead) and my implant was removed. The scar took months and months and lots of manuka honey to heal but i did eventually get there. Ive just looked in my diary and i can relate to how depressing it makes you feel - i cried and cried and got soooo fed up with all the fluid and all the changing of pads!!!
I will keep everything crossed for you and although not the same situation as you i would shout shout and shout and tell EVERYBODY that your not happy and you want something sorted!!!!

please let me know how you get on

deed
xx

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Re: Is there anyone else out there like me.

i`m ever so sorry pam , i cant help and it sounds like you have been so unlucky , keep you chin up , its something u could have done without i know , hope it all goes well for you in the future , keep posting xxx

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Is there anyone else out there like me.

I`ve posted a few times before in the hope I`m not the only one with my problem.
MX in March 2009 followed by chemo and rads, now on arimadex. Felt fine for about a year then found lump on scar in Sept.2010. Had biopsy which was fine but Breast surgeon decided to open the scar up and clear it out and glue back together. A week later I could feel fluid in the wound but was told it would absorb, unfortunately it burst open like a fountain. I had district nurses dressing and packing it for 5 months, then was refered to a Plastic surgeon who treated it with Manuka honey which showed some improvement, then it was treated with promogan which again showed some improvement, the fluid did slow down but the hole wouldn`t close. Last week I had surgery to debride and stitch the hole, unfortunately this has not worked as my skin was so fragile and the fluid is worse than ever and the skin is very sore with all the leakage and continual dressings. They are now hoping to fit me with a wound vac. Apparently its the size of a large handbag that I have to have attached 24/7 and carry round, might ask if its a Radley or a Gucci but don`t think I will get that on the NHs
I`m at the end of my tether after 9 months, pleeeeese if you know of someone like me let me know the outcome.
I know I shouldn`t be moaning, lots out there worse than me. I don`t know what I`d do without this site, so many inspiring stories and help.