Thank you, yes I’ve got family and friends I’m happy to chat with just looking for people who have made a similar decision. I’m just taking the positive that it’s gone for now and I’ve a few weeks to recover before deciding next steps x
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Good news the pathology was good post surgery.
You can call the BCN nurses on 0808 800 6000 to talk through the pros and cons of chemotherapy. You should also be able to contact your own breast care nurse team and chat some more.
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Long post alert
So, sharing my most recent update/setback. So glad I chose to write this today rather than yesterday when I was in a very dark place and feeling absolutely awful. So here goes.
I had DIEP reconstruction about 4 weeks ago. Was in hospital for a few days but got home and was recovering well. The exercises made a huge difference to my mobility and strength and I was going lots of walks and feeling good. All the time though my new boob was still swollen, bruised and achy as well as leaking a lot of yucky fluid. I had been attending clinic each week to get it checked out but to be honest I hadn’t seen any improvement in a week or so. Anyway, fast forward to yesterday when I attended clinic but this time surgeon was present as she wanted to give me the go ahead to start chemotherapy in a couple of weeks. Almost as soon as she looked at the DIEP she says she wasn’t happy. Checked it with a Doppler but no “heartbeat” and when she scratched the outside it didn’t bleed. She believed it had become infected and there was damage to the live tissue. She knew she had to go in and have “a look” so I was admitted and put on waiting list for theatre. Meanwhile we discussed all the different options and possibilities but I made the decision to just have the whole thing removed if the tissue couldn’t be saved. I was absolutely devastated - not so much at losing the breast - but that the procedure had failed and that I hadn’t known there was anything wrong and so much time has been lost. I have been curled in a ball and crying for 24 hours feeling very sorry for myself. My temperature also spiked overnight and I was placed on IV antibiotics I had surgery today which was only about an hour. When I woke up I discovered the whole breast had been removed and I have decided to remain flat for the meantime. Hopefully chemo will not be delayed by too long and I can move on from this.
My surgeon seems genuinely devastated that it’s come to this and has offered me lots of support (psycologically and practically) as well as advice for if I decide to have recon further down the line. It seems to be very rare that this would happen so far down the line. Usually first 72 hours are where they know if it’s going to take or not.
If I do want to have recon she would probably advice using the back muscle next time or even implants. I honestly don’t think I could go through this again though. I’m hopefully done with the operating table. I feel better already and it’s such a relief not to carrying about a big, hard, sore swollen boob. I’m a bit sore where stitches and drain are but nothing I can’t handle.
Just another wee hurdle that I’ve overcome and I’m feeling good this evening.
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@fubc sorry to hear about this setback. It’s definitely not what you would want. I’m so pleased that you have shared it with us on the forum. I have found sharing things that others don’t get on here really cathartic.
I hope your temperature is now under control and you are feeling a bit better from that.
It’s nice to know your surgeon is being supportive. I bet they are upset that it has failed because all they want to do is a good job for you.
Thinking of you. Speedy recovery.
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Thank you. I did find it quite a relief to actually type it out and put it on here. I must admit I am so glad I waited 24 hours though as there would have been tears, snotters and swear words mixed in!
I also felt genuine relief after the removal. Now I have to go and do lots of research on bras with pockets and prosthetics which I hadn’t considered before. The padded thing they have given me is massive compared to my other boob! Hopefully getting home this afternoon with drains still in and a dose of antibiotics and chemo won’t be delayed for too much longer.
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