Infection in reconstructed boob following DIEP

Got my biopsy results bot day and, as suspecthave the confirm DCIS.
I had DCIS 4 years ago and had 2 WLE’s followed by radiotherapy. As radiotherapy is not an option again as the DCIS has returned in the same breast I have been adviced to have a MX.
the hospital rushed through the biopsy and consult as I am away on holiday on Wednesday and they wanted me to know what I was facing when I came back. I saw the consultant today and am looking at having the surgery and DIEP reconstruction at East Grinstead probably mid May.
I am going to do my best to relax while we’re away and look on the positive side that it has been found before it has had chance to become aggressive and for that I am grateful!

Sounds like you have a great team. I’m the same, DCIS lumpectomies and radiotherapy five years ago and it came back. Five weeks out of the DIEP tomorrow.
Did you take tamoxifen or anything else?

As far as they know there is no need to take tamoxifen or anything else but I guess until they do the pathology after the MX then we can’t be certain.
how has it been recovering from the DIEP?

Have got appointment with surgeon for 29th and looking at mastectomy and reconstruction either 8th or 15th May. I know it’s good that its moving fast but it’s also scary that it moving fast. Left Uk for a weeks holiday on Wednesday and actually took call from surgeons secretary whilst in departure lounge at Gatwick.
Glad I know what to expect when I get back and the fact that holiday already arranged didn’t delay anything. Am trying had to relax and get mentally right for when I get back. Have decided that I am ‘pre-couperating’!

Hi. I’m actually 1 year post DIEP this week :slight_smile: What a year that’s been!!! If I can advise anything, you need to keep your breast nice and warm post op. They gave me something to lay over the top of my breast for at least 48 hours after my operation - I’m sorry, but I can’t remember what it’s called in medical terms, but it was a piece of thick cotton wool/gauze padding, about a foot square in size. They did refer to it by a name, but I was a bit out of it on morphine to remember the name lol!!! It is really important to keep it warm to keep the blood vessels open and flowing. They should check it often during the first 24/48 hours. I just remember being paranoid about my breast getting cold haha.
I was back at work after 6 weeks, and able to drive. I wouldn’t say that I was back to full physical health by then, but I was fit enough to go skiing in February this year. I would say that there isn’t anything that I can’t do now. I do pilates on a gymball (which is GREAT for building your core strength back up, not for a good few months post op though), badminton and jogging. It really doesn’t take too long to get back to ‘normal’ life.
I hope that all goes well for you with your operation, and I hope you have had a fabulous holiday.

Hi Skigirl, thanks for the post. It is really encouraging to hear how we’ll you are doing now. I think I am so caught up in what is coming that I keep forgetting to look at the ‘other side’ once it’s all done and I am recovered.
i am currently on holiday in Sicily and I have had such a lovely day that I forgot all about what’s coming. Hopefully I will be as mentally and emotionally prepared as I can be when i get back to the UK by relaxing now.

Fortunately, life does carry on :). I’m glad that you’re having a lovely holiday; it really will help you to relax. I’m not going to lie, it’s not the easiest of journeys, but it won’t be too long before all seems ‘normal’ again. In my experience, it’s a different normal, but it’s not so bad.
I had my first mammogram today, 1 year later. Our hospital is really good and you get the results on the same day. It’s good news. Nothing to worry about and I don’t have to go back for another year :smiley:
I hope all goes well for you. Please keep us updated on your progress xxx

I must admit my local hospital is really good (Maidstone, Kent). The breast care unit are remarkable. They pulled out all the stops so that I could have the biopsy to confirm the suspicion before I went on holiday and got the results back two days before I came away so that I didn’t have to worry whilst I was away and so that events weren’t delayed because of my holiday. I was a little concerned that my surgery was not going to be done at my local hospital but at East Grinstead instead but I guess that the expertise for reconstructive surgery is there so it does make sense to have the best of both.
We’re now in the second half of the holiday and I have to confess my mind is starting to wander off thinking about what is going to happen when I get home but thankfully it’s not to bad so far - I am trying not to get too anxious but the nerves are creeping in.
i am very thankful for the support from this forum though - it helps to make me realise the way I feel is not abnormal.

I don’t think there are many surgeons that perform the DIEP reconstruction. There wasn’t the expertise at my local hospital, so I had mine at Castle Hill hospital in Hull, which is about an hour away from where I live. The down side was not many visitors, but this was a plus side also as I found that I was so tired, especially after visiting hours (it’s actually quite tiring talking when you’re not at your best!!). Once I was discharged, the care was transferred back to my local hospital as they work as a team.
I do hope that you are managing to still enjoy your holiday. I found out my results 2 days before going on holiday too. I took all the information and books with me so that I would be able to read up on things if I wanted to. Do you watch Friends at all? There was an episode where Joey hid one of the books in the freezer. The books that I took became lovingly know as the ‘freezer books’ lol :smiley: . I do understand your nerves and anxiety. It’s only human nature to be worried, and you’re not abnormal in any way, but try to enjoy the rest of your holiday anyway.
Take care xx

Date set for 15th May for mastectomy and DIEP reconstruction. Have had all the pre op assessments and CT scan so all ready to go.
i opted to see the psycology counsellor while I was at the pre asessment appontment and i am glad i did. She took me to the ward i would be staying in so it wont be totally unfamiliar when i go.
want it over and done with now.

Good luck for 15th! Emotionally, you will feel better once you have had it done. Physically, it may take a little longer, but you will get there!
I really wish you well. Try to keep positive xxxx

Duffer56, you have been and are in excellent hands and I too went through the route you have…Maidstone then E.Grinsted for diep. Skigirl is so right on all fronts. I had ups and downs and to let my body heal was difficult at first. You will get used to the ‘new normal’, it takes time and I too wish you all the best. By the way, I’ve been seeing a woman psychologists from week three out from surgery. If you have private insurance, this is also covered. Now, ten months later, it still is and has been an excellent addition to my recovery. LB, x

Hi Lilac Blue, unfortunately I don’t have private insurance so I will have to see what the NHS come up with. I know their resources are limited so I am not holding out too much hope but it has to be worth a try.
I am grateful for this forum as it helps to make you feel normal in an abnormal situation. I keep getting odd twinges where the biopsy was done - my logical head says that it’s just where they ‘twanged’ the nerve but my ‘scared’ head starts to think that there’s something happening in there and that the cancer is spreading. I know I’m being paranoid but it’s hard to stop the thoughts.
Roll on Wednesday, lets get this sorted and start to move on.

Hi Duffer56
I suffered quite a lot with the biopsies that I had - actually very sore for weeks, especially the vacuum one that they did. I found that I had problems with it right up until my Mx, so I really wouldn’t worry about this sensation at all. It is ‘normal’ to be paranoid - you’re going through a pretty tough time.
As the song goes “Things can only get better” :slight_smile:

It was a vacuum biobsy that i had. I had one five years ago and didnt have any problems with it afterwards. This time however they gave me a local and took what they needed but then they decided to go for something a little further away from the main area. I didnt feel anything with the first part but felt like they had ‘twanged’ my nipple with an elastic band when they tried to move away from the main area. It was uncomfortable rather than painful but they stopped then anyway as they had collected sufficint for the pathology. I am sure that it was the later bit of the biopsy which as left The nipple a little sensitive.
On a lighter note - i was describing the biopsy to my friend and she took me literally and asked why they had to ‘twang’ an elastic band at my nipple! Bless her innocence - it did give me a case of the giggles imagining somebody sitting there trying to flick elastic bands at my boob!

Duffer56, if you become a squeaky wheel (avocate for care rather than wait and see what comes) and pound your fists a bit with your GP, you can get a referral. An aside, you may already have this, yet you are entitled to a NHS exempt card that gives you free prescriptions for five years. Of course I had to ask at the chemist to get the form, my surgery does not provide it, and with a cancer diagnosis the plastic white card was supplied tout suite (for me it was).

The day before my surgery, I walked in the back garden with my shirt and bra off, feeling the sun wind and rain on my chest, specifically, my left side. I had a little talk with my breast, told it how grateful and thankful I was for the years it had been with me and how well it withstood the extended breast feeding with my son when he was a baby. This may sound silly, yet this expression I think helped me to heal and accept the changes…passages of recovery with a tiny bit equanimity.

The night before, I had a appointment with my BS and she gave me the news that my lymph node that was removed the previous week – was clear. I had two biopsies (after three other’s one was a stereotactic biopsy with 13 samples taken). I burst into tears of joy and it made facing surgery the next morning easier.

When I woke after my 10 hour surgery it more or less like a ball of socks appended to my chest wall. I asked how long till it feels like me and was told six months, now at eleven months out, well, it’s just starting to be and – mostly I forget about it. My stomach area is starting to have nerves reattach. Funny, my new tummy button was something I was not prepared for, although I knew it was going too. I like it, it looks very real and it’s higher than the last.

Time will seem slow and fast in recovery. I found my time at E.Grinsted passed quickly and you can call your family as much as you wish. I know what you mean about the distance (I’m in Charing), that put me off too but my Onc said in the timeline of the process, this time away was a blink of an eye. My husband and 14 year son spent Father’s Day in hospital with me and I bought and wrapped the presents before surgery, and had them bring them for our in hospital lunch to open them with ‘dad’.

It’s all going to go well Duffer56 and I’ll be right here sending up good thought’s and prayer, waiting for you to check in and let us know how well you are doing. Like Skigirl said, things can only get better LB, x

Hi Duffer56, I just wanted to wish you well for tomorrow. Don’t forget, the first 24/48 hours is so important to keep your reconstructed breast warm. The room should be almost verging on being uncomfortable, but it has to be warm to keep the blood vessels open to help with the ‘plumbing’ :slight_smile: Oh, and try not to be too brave. Accept the pain killers - it will help you to heal.
Following on from LB’s remark about how the breast feels in the early days (months!). I too felt that way, and even now, 13 months on, it can feel quite strange. Your breast will seem a VERY strange shape to begin with, in both feel and look of it. Mine has settled down now and from a profile, they look pretty much the same. The recon is just a bit fuller, but I have had 3 children so my natural one is a little ‘saggy’ lol. It will take several months though, so don’t worry too much about the shape. To add to LB’s comments, I have some feeling back in all of the areas of surgery, including my breast. Nothing in the middle ‘disc’ of the breast, but around the areas. Some days this can be very sensitive and uncomfortable, but it’s quite nice to feel it wobble - very strange!! But it’s all sensations that you will get used to :slight_smile:
LB, I agree with you - my tummy button is a lot higher than before!! The surgeon in Hull re-positions the tummy button and sews it back in the shape of a heart. It’s actually quite sweet, as the skin around it is a different skin tone, so it almost looks a bit like a heart-shaped tattoo.
I shall be thinking of you tomorrow. And of your family too, as I think it’s really hard on them as the surgery is such a long time. Come back and let us know how you’re getting on as soon as you can. We’ll all be here for you xx

Surgery yesterday a bit of a marathon but agave made it from bed to chair twice today so can’t be too bad. Had 3 drains in after operation and two out already. Surgeon hopeful I may go home Saturday or Sunday. Sore and tired buotherwise ok

Hi! I’m surprised to hear from you so soon. I’m glad all is going ok for you. Don’t forget to keep your breast nice and warm :slight_smile:
Yes, they don’t let you rest for too long. I was only in for 5 days - Op on the Monday and home on the Friday. Don’t rush it though. If you can benefit from an extra day’s rest, then stay there if you have the option. When you get home, you try to do things that you shouldn’t!! The surgeon wanted to send me home on the Thursday, but the nurses said it would be better for me to stay the extra night, so I did.
Take care xx

good advice. I have asked them to leave the catheter in tonight as i am drinking loads of water and i dont think i am up to getting up and down to go to the loo! That may well delay it for a day anyway. Boob ok just wary of moving with the tummy!
am really chuffed - have got my Ipad working with a dongleb- until last week i didnt know what a dongle was! X