Immediate Diep Flap reconstruction pre and post surgery

[Shnug]

Hi Jacaranda

I've just put a post up about DIEP reconstruction and then came across your post. I'm having the DIEP op the same day as you on the 9th September in Liverpool. It's delayed as I actually had the mastectomy in May last year. I was told immediate reconstruction wasn't an option due to COVID. I'm REALLY nervous about such a big op. Maybe you want to keep in touch to give each other support both post and pre op? Hayley. 

[Fiveoclocksomewhere]

@sarahn - I’m so glad! You’ll hopefully start hurtling through the milestones now (stopping compression stockings; dressings off; scar massage; sleeping on your side, etc) and it’ll all be in the rear view mirror soon enough. 

xxxx

[sarahn]

Hi all, thanks for all your messages of support. I am 3 weeks post op, it couldn’t have gone better. I feel absolutely fine and am planning a trip to Italy at the end of the month. I echo the advice listed below- drink loads of water too - it really helps. I also would recommend dried apricots- very good. Be mindful of liquorice allsorts as they can raise your blood pressure in some cases. I just wanted to say thanks, and offer support- I was so nervous pre op but actually post op was so much better than I had anticipated. Modern medicine and surgery is unbelievable and I feel incredibly fortunate.🥰

[Jacaranda]

Thanks for the amazing support and advice. I’m looking forward to being at the other end of this now and chuckling out loud that I might even change my name to Bertie Bassett! I will add yoga pants, fig rolls and liquorice all sorts to my shopping list! xx

[Fiveoclocksomewhere]

@sarahn , just wanted to echo what @vanmack @said - the staff are all brilliant, and know that we’re going through a range of emotions, so don’t worry about putting yourself entirely in their hands. I just wanted to get on with it so I could put it all behind me and move on, and it’ll be behind you soon enough too xx

[Fiveoclocksomewhere]

I was given very good advice about trying to avoid constipation (this is nothing if not glamorous). Although the hospital gave me liquid laxatives until I didn’t need them any more (ahem), I also stocked up on fig rolls and liquorice allsorts. I also bought bras from Sainsbury’s, and the other advice I was given was not to go overboard with them, you don’t need too many. I wore yoga pants most of the time (bought specially, I am not a yogi) which were very gentle on the waist and didn’t touch the scar, and zip up tops, and generally lounged about. I also bought nice candles, and hand cream (Neom do mini hand cream tubes and they smell amazing), just for a bit of pampering. As other people have said, the staff are brilliant and do everything they can to relax you - all you have to do is listen to your body, and know that this too will pass. 

You’ll be on here dispensing liquorice allsorts-type advice before you know it - we’re all rooting for you x

[vanmack]

Hi @Fiveoclocksomewhere so pleased to hear another positive post re Diep Flap. I agree with you completely on doing things that keep your mind busy and stop it from wandering to negativaty avenue, for me the psychological impact had been as important to focus on as the physical, coming to terms with the loss of a breast and the surgery does make you think exactly that 'What the hell just happened to me '! I had to make a choice for surgery that I did not want but had to have, be that implant, remain flat, Diep flap etc, it's an emotional roller-coaster but we're out the other side 💪 we'll done on getting to the gym, I'm trying to stop eating my body weight in cake, it's hard 🙄 all the best with your recovery x

[Jacaranda]

Thank you all for your positive encouragement. Much appreciated - and such a boost just when it’s needed!

I realise my expectations for recovery after my lymph node surgery last week were just way too high and I was really hard on myself. So hopefully that’s a big lesson learned before the ‘big op’ in September. 
I just have to slow down and be kind to myself!  (Easier said than done!)
Hoping and praying that I’ll be back here offering words of reassurance to others in a couple of months time. 
I’ve had moments when I’ve just thought ‘get rid of the cancer and forget about bothering with reconstruction’ as it sometimes feels overwhelming - but I guess that’s normal?? 

There’s so much to take in and process and I guess it’s only 6 weeks since my whole world was turned upside down. 
Spent yesterday evening ordering button up nightshirts, post-surgery bras and shapewear granny knickers! Was surprised to see that Asda had a good range of stuff that was cheap and cheerful but had good reviews.

Any other tips and advice would be very welcome! 

[vanmack]

Hi @sarahn, sorry for the late reply. I don't know if you have had your surgery yet but wanted to wish you all the best. The surgeons will do their absolute best for you and you will be so well supported by the staff, they know this is a big surgery and scary for the patient so adjust their care accordingly. This is just another experience life has thrown at us one we will look back on and say isn't it amazing what they can do 😘

[vanmack]

Hi @Jacaranda, sorry for the late reply, I am so grateful for the immediate reconstruction, I really didn't want to go through multiple surgeries as I have pre existing health conditions. I continue to work on my recovery and am content with the outcome aesthetically. I have been offered nipple reconstruction and dog ear correction (the pointy bits at the ends of the abdominal scar) but they are not important to me, I don't really notice them. At this point I'm not bothered about a nipple, and feel I've been through enough for the time being. That said this is a long haul flight, I have learnt the hard way what my limitations are physically and now listen to my body perhaps for the first time ever. If I can offer any advice it's look after your new body with plenty of rest, lots of lovely foods, gentle movement often until you feel more capable and know that you will get through it ❤️

[Fiveoclocksomewhere]

Hi

I’m hoping @vanmack‘s experiences continue to be positive, but wanted to drop you a line to hopefully allay your worries. I’m now over 3 months post mastectomy and immediate DIEP, and can honestly say that the most challenging bit for me was the week or so before the surgery, when I was trying not to let my imagination run away with me. My recovery’s continued to be straightforward - I went back to the gym a couple of weeks ago, and although I’m taking it easy (any excuse….), that felt like a big milestone.  The scars are really neat, and I’m massaging regularly- and looking forward to the nipple reconstruction, hopefully later this year. I made a huge effort to eat healthily in the run up to the surgery (spinach in everything…), and I hope that’s helped me heal well - I haven’t gone mad about it though, and it obviously hasn’t stopped me eating copious amounts of ice cream when the sun’s bothered to shine too. 

My overwhelming feelings are still of huge relief that the DCIS was caught early, and was treatable; of disbelief that this happened at all; and of awe at the surgeons’ skill. 

I hope your experience is equally positive. If I were to offer any advice at all, it'd be to try and keep your mind busy (I was surprised how useful I found the Headspace app), get as much fresh air (and sunshine, ha!) as you can, eat as healthily as you can bear, be kind to yourself and don’t listen to anyone who brings you any negativity.  This will pass.

Much love to you.  If you have any questions at all, or just need a virtual hug, just say the word.

xxx

[Jacaranda]

Hi Vanmack

I’m re-reading your positive message now that my surgery is getting closer. I’d even ‘forgotten’ that I’d asked the question about breast reduction and surprised myself that was 1st July - a whole 6 weeks ago on this rollercoaster journey!

I’m having mastectomy and DIEP reconstruction on 9th September. And yes, the surgeon was very understanding and supportive about my request for reduction. 
I had sentinel lymph node excision and biopsy last Wednesday as they wanted that done separately and before the main op in case it changes my treatment plan.

I was very bruised and sore after the op and it took longer to get over than I expected although I may have been too hard on myself. It took 5 nights to realise that sleeping with a pillow under my shoulder meant I woke up without severe pain and stiffness in my arm!
Wish I’d found out sooner.
I hope my experience in September will be as positive as yours. I’ve got 4 weeks to get my act together physically, emotionally and practically. 
Thank you.

Good luck everyone 

[sarahn]

Thank you for sharing this, I will have surgery soon and I’m petrified but your message has given me a real boost. Thanks so much 

[sarahn]

Hi there, I’m having the same procedure- I asked my consultant if I could have a reduction and the answer was yes - it’s not a cheeky request. Seriously, you’ll be surprised at their response. 

Good luck

[Jacaranda]

So heartwarming to hear of your positive experiences here. Hadn’t appreciated that immediate reconstruction wasn’t being done in the peak of Covid. Sorry for those who have to undergo a second op. Something else I should be grateful for in the scheme of things.

I’ll be having mastectomy and reconstruction in the next few weeks but I’m feeling really cheeky as I want to find out if the reconstruction can be smaller and my ‘normal’ breast reduced to match. Is that too much to ask for? Feel guilty thinking like this when my priority is obviously to get rid of my breast cancer. Just wondered if it might be an option though. 

[vanmack]

Thankyou @Fiveoclocksomewhere so glad to hear it's been a positive experience for you. The hard bits done, I wish you all the best in your continued recovery ❤️

[Fiveoclocksomewhere]

Hi

My experience (I’m now 4 weeks post-op) is very similar to yours - all very straightforward, and I’m delighted with the new breast and how neat the scar is, although my overwhelming feeling is of relief that the DCIS has been removed.  What a way to end lockdown!

much love to you. 

xx

[vanmack]

You are very welcome Becky87, I know for me I would have been anxious whatever surgery I was having, yes it was a long surgery it can be done in less time but my surgeon was meticulous, no other reason for the length he just wanted the absolute best result for me. I knew nothing about it, it was more concerning for my loved ones to be honest. Initially post surgery is difficult as you have drains in both abdomen and breast but mine were removed after the 3rd day and you start to feel more comfortable, you will be well supported with appropriate pain medication and our fantastic NHS staff, i wish you all the best in your choices x

[Becky87]

Thank you for sharing this! I had a mastectomy for dcis in April last year and wasn’t able to have recon at the time due to covid. Currently on the waiting list for a Diep but been feeling anxious about it. Wondering if it’s worth going through such a long surgery. Like you I didn’t want an implant as didn’t want anything foreign in me! 
glad to hear it’s gone well, you have restored my faith In My decision. Thank you 😊 

Becky xxx

[vanmack]

Thank you Tili, I think it's great to support each other x

[Tili]

Dear Vanmack,

How nice to read such a positive response to your surgery, wishing you well with lots of very happy days ahead.

Please take good care, look after yourself one day at a time.

Big hugs brave lady 🌈🙏 x

[vanmack]

Hi everyone, I am on day 10 post op for a right sided mastectomy, sentinal node biopsy and immediate Diep Flap reconstruction. I thought it might be helpful to share my reasons for choosing this type of surgery and my experience after surgery. I had WLE  previously in the same breast in 2016 for high grade DCIS plus 15 rounds of radiotherapy, er/pr negative. On my last (5th) year surveillance mammogram a new cluster of calcifications were detected in the same site plus a new area of invasive ductal carcinoma. My only option at this point was a masectomy, I knew I did not want an implant or anything foreign in my body so for me it was either try the Diep or stay flat, I'm a young 52 year old not ready to accept that just yet. My surgery was just over 11 hrs, it went really well and medically they were really pleased with the surgery and my observations. I cannot tell you how scared I was to have such a long surgery but that's understandable, there would be something wrong if I wasnt. Emotionally I found it hard to accept the surgery and it took a long time for the anaesthetic to leave my body, honestly only started to feel the brain fog leave in the last couple of days. But, I am amazed how I have turned a corner, beyond chuffed with my new breast which started to have sensation around three days post op and now feels like part of me, because it is part of me! My mobility is getting better each day as I continue to heal and am doing my exercises as recommended. I currently only require ibuprofen and paracetamol but only when I feel I need it. I am in awe of the surgeons skill, I have a brand new belly button and a flat but still numb stomach with a surprisingly considerate scar about 1.5 inches above my pubic line running in the curve of my groin area from hip bone to hip bone. Most importantly they have cut the cancer out of my body and that's the priority, reconstruction was a choice but I'm so glad I was brave enough to go for it. Love and hugs to anyone out there who is going through this terrible disease xx