Thanks for your support, I think it's standard belt and braces to check all removed tissue, I'm so glad they did.
I have plastics check in the morning and then radiotherapy starts Tuesday.
I wear M&S mastectomy brad they are like t-shirt style and comfy as they are slightly padded. The best corset I found for me were on Amazon. Gotoly women butt lifter shape wear! I wouldn't have worn it while scar was healing in case of dragging, but now they really suit me I've got a few.
Hope your op goes well. Wishing you lots of luck and great boobs! Xxx
Hi @KazzaH , your 18K steps in a day is giving me hope that recovery will happen, although it sounds like it's been a marathon to get there. Sounds like a comfy bra and corset is essential if you're wearing them all the time, any brands you'd recommend?
Sorry to hear about the cancer in your other breast, and the radiotherapy you now have to go through. I'm due to have a reduction in my "healthy" breast, but I'd not thought that they would check the breast tissue that was removed in the reduction. Did they have any suspicions about a cancer on that side before you had the DIEP?
There was an article on Womens Hour on Radio 4 (think it was yesterday) about nipple replacements and "bionic boobs", need to have a proper listen on BBC sounds as was distracted by my family..
Hi lovely ladies
Great to hear your progress Sorry I haven’t been on for a bit. I’m 8 weeks post surgery tomorrow and still wearing day and night bra and corset support.
My surgeon said 12 weeks for support although nurse said 6. When I take them off my Diep is so heavy it feels like it will drop off!
Also when I had the other reduced they found cancer and so I’ve had to have lymph nodes removed and now radiotherapy which I get measured for today.
So pleased you’re being offered nipple reconstruction so early, I’ve been told 4-6 months is earliest for next stage to cosmetically reduce DIEP a bit and do nipple, but could be 1-2 years wait on NHS so may have to go private. But that was before the other cancer was found on left so could be longer.
Good news is all cancer is gone and I’m doing okay I’m walking a lot and got up to 18k steps one day on a short break
i have physio on NHS and they’ve given me exercises which tire me more than walking xxc
@weejeannie Glad you’re getting on ok. I also feel strange massaging the scars, a bit queezy even.
I am pleased to say I no longer wear a bra 24 hours a day 🙃. I did the full 6 weeks, maybe even 7 weeks, and then changed to a vest top at night. It felt strange without it at first but as it was 🥵🥵🥵 I embraced it. I tend to wear the post op bras when I’m around the house and put nicer ones on when I’m going out. No idea why, I guess for max comfort..
Having nipple recon mid-end September. Small op. They did stress that it doesn’t always work brilliantly and can flatten out when healing. I am going to give it a go. At some stage I’ll then get a tattoo.
I need some advice on how to get back to exercise. I emailed the BCN but no response as yet. Any recommendations? I was thinking a personal trainer might be best to guide me at first.
@LMH @Hi Louise, I seem to be getting there. I’ve been told by my nurse that those bumps are the ones I need to massage and to apply good pressure but I have to be honest it feels really weird and makes me feel a bit uncomfortable, which is strange considering all the other things we’ve had to endure I think I am doing it for a little longer than I was to begin with, scars on breasts are looking good tho but I really which I could take my bra off for one night, I’ve still another week to go wearing day and night….
can I ask are you still in the bras you got post op or have you branched out into anything else yet?
like you girls on here I also needed a couple of courses of antibiotics but hopefully now properly on the way to recovery. Some days I still feel quite tired but I think that’s my blood count waiting to see results tomorrow, I am definitely moving around more easily and I do think the swelling in abdomen is going down but the area can still feel tight at times.
I’m in Glasgow and the heat here is crazy (definitely not used to it) so can only imagine what you are going through in London!
Take care and keep us updated re nipple x
How’s everyone getting on? I am doing well at 8 weeks post op. Weirdly, I have moments where I forget for a split second, and then remember that I’m still going through this. I still have some bloating or inflammation around my tummy above the scar. Also, the scar feels bumpy under the skin, is this why you’re meant to massage? I have been rubbing cream into the scar regularly but maybe not hard enough. Any idea?
I am chasing the hospital for nipple recon. I was offered it so thought I’d go for it, then have a tattoo at some stage. If I don’t do it quickly I worry I’ll let it slide and not bother at all.
anyhow. Hope you’re enjoying the sunshine ☀️ it’s so hot in London
@Artura I have kept nipple on healthy boob, it was just moved up and honestly I was worried that there may be issues with it but that had been the quickest part to heal, it’s kind of blown my mind.
don’t get me wrong the whole thing has been difficult and it’s a massive thing for your body to cope with but I have to say in my experience it’s been better for me mentally that it was all done at one time. I think one of the things that has been hardest for me is actually realising that this will hopefully be the end of procedures and surgeries, I have since my diagnosis struggled with looking beyond the next step, appointment or result and so this part the physical recovery is for me incredibly emotional which I hadn’t really considered but I have to say that so far I am more than happy with the outcome my boobs feel like they are part of the new me, having no nipple on the reconstructed side isn’t really an issue for me and I’m not planning on having any further surgery to create one or have tattoo but I know this is something that they have advised I can do at a later date if I wish. My goal was to have a body that was healed (I had issues due to radiation which caused a problem with my wound after my treatment back in 2020) and to be able to have boobs that were a similar size so I could wear a bra and clothes comfortably and I do believe that this has been achieved. Please do not hesitate to ask any questions no matter how mad they may sound in your head, someone here will be able to offer advice or at least tell you of their experience. X
@weejeannie thanks, that's good to know, hope it gets easier for you soon. I'll start looking at nice comfy bras. Will have to see what the surgeon thinks, but having both done in one go sounds possible. Like the idea of not being too lobsided. Can I ask, did you have to lose your nipple in your healthy boob too, or can it just be shifted up?
Been looking in my wardrobe today, wondering what my current clothes will look like on my post surgical "new" body..
@Artura I was exactly the same in terms of chaotic house, I did some deep cleaning, organising and delegating before hand to try make things as easy as possible for the time I was away and also for my return home.
From this thread one of the best pieces of advice I had was to have a selection of different sized bras and bra extenders to help when I was very swollen post surgery.
I had a reduction on healthy boob at same time and whilst it seems like adding more to a complex situation the reality is there were other surgeons working which meant for me anyway it made sense for all to be done at same time as it didn’t add any time to my hospital stay etc.
My surgery was just over three weeks ago and whilst recovery is difficult, I have come to accept it is going to take time and there is nothing anyone can do to speed that up it’s really just a case of getting through each day and taking notice of things getting a little easier each day. Wishing you all the very best x
Thank you all for your DIEP posts, I'm finding this thread so helpful! I met my consultant yesterday and I'm being referred to Whiston hospital for consideration of a DIEP. Likely to need a reduction on my other breast too, and wondering if best to get it all done in one massive day of surgery?
It sounds like there's a tough road ahead, but are you all glad to have chosen this surgery? My children are 9 and 11 so going to follow all your tips for pre DIEP preparation. Our house is pretty chaotic at the moment so there are going to have to be lots of lists!
What are the random things you've found really helpful during your recovery? Am thinking pillows, front fastening bras, well stocked freezers?
Thanks everyone! Xx
I absolutely love the idea of a cuddle space, this I think will be of massive benefit!
You are so right there are odd moments where I feel tempted to do something that I really shouldn’t be, it’s very difficult especially when like you it’s in your nature and life to care for others and the tables are turned. Sending you lots of love x
@lisa89 I am almost 3 weeks post op and overall everything is going well. I’m so glad that we have this space to share our experiences and hopefully get some tips for preparing…
I found the pre op time very difficult I was terrified and I think the unknown can play a huge part in that, I was also very worried about how long I would be away from home and my son who is 6. Due to my bloods I was in hospital for just over one week, they had initially hoped I would be home after 5 days.
I am having my wounds checked twice a week at the moment and I still taking things very slowly not really ventured anywhere apart from my appointments. I am managing to hug my son very gently and he seems to be coping with the fact that I am limited for this period of time.
I think the best advice I could offer is to try and focus on the planning aspect (organising for help with food, house, kids etc) as best you can and doing what you can for now to spend time on doing all the lovely cuddly fun things you can.
the main thing to remember is post op it’s going to take time and unfortunately none of us can cheat at that.
we have got to this point which is a massive indicator that we are amazing warriors so try use the same mindset when approaching this step!
I’m nearly 5 weeks post DIEP op, but in reconstruction of other breast they found another cancer, so I’ve just undergone lymph removal on that side too.
I don’t have little ones but I do care for a 92 year old so other end of spectrum!
My tips are plan and manage in advance and say yes to all help.
My husband worked when I was in hospital and took leave when I came out, it was tiring for him but thoroughly recommend that.
Each one of my friends have different loves, so I asked them to do the things they’re good at: shopping, cleaning, tidying, dog walks, dishes. Say yes to everyone I got so many flowers it made me cry (the silly things), because they got messy and I couldn’t lift and my husband had too much to do, I had a relative do them.
Ive had people stay over on rota and although it’s a bit different it makes sure someone is on hand for care for Mum at all times, otherwise I’d be tempted. I’m really conscious how much it’s put on hub so it’s given him relief too.
Don’t be tempted to over-do and start to pick your little one up, I split my t-junction at the bottom when I just tidied the house, this is apparently common and it’s put me back.
Pre-cook and pre-prepare food and above all look after you. You are number 1 now. To use the example of an oxygen mask when flying you can’t help others until you help yourself.
I wonder if between now and September you can choose a chair or 2 in the house that your 1 year old can climb onto on their own and you can kneel down to or sit on and they come to you. Call it the cuddle chair and make it a game at first through August. They get onto the chair for a BIG cuddle, keep practicing so it becomes automatic if they are upset to go to a cuddle chair. Just a suggestion.
Hope that helps, the wait is the worse, please ask questions if you want.
sorry to hear that need to be here
I know how you feel the anxiety before you’re op is terrible its hard to find other things to think about but totally normal 🙂 im sure everything will be absolutely fine
good luck x
sounds like you are doing great 👍
i know what you mean about conserving energy 🙂
@lisa89 hello and nice to meet you. I am now 6 weeks post op and life is getting back to normal. I too was worried, and it’s a big op, but the surgeons are superb and do this regularly.
My children are 4 & 6 so I was keen to know when I’d beable to look after them properly again. So today I’m taking them to a tennis lesson. I will be driving there and back (I previously may have walked) but that’s mainly to conserve energy. They’re still too much for me but I can just about keep up, and that’s only 6 weeks post op.
In the early weeks my Mum or my sister stayed with me to look after the kids and make meals when my husband was at work. There was no way I’d have been able to do it without them.
please reach out with any questions at all. Happy to help. Louise x
I'm just jumping on this post to thank yous for sharing your experiences and journey post recovery. I'm not due to get my mastectomy & reconstruction until the end of September but I am terrified and find myself trying to read as much information as possible. I have a 9 & a 1 year old so I know I'm going to have my work cut out so trying to prepare myself now x
@LMH @Thank you so much for this, I really didn’t think that I would feel so weirdly about everything once the surgery was done I don’t know if it’s just my brain playing catch up with my body because I feel distraught at times, thankfully I do have support from family and my husband is amazing. I’m so glad to hear the progress you made so far it really helps to keep me encouraged. I think my first night home I slept amazingly well and then after that not so great but could be the heat also I think maybe I’m taking my medication too early, I may try change that tonight and see if any difference. Xxx
@weejeannie I’m so sorry you’re having a rough time. Trying to find comfortable positions is tough. I bought a ‘wedge’ for the bed to I could sleep partially upright and one of those V shaped maternity pillows for downstairs. I can only reassure you that it gets easier within days / weeks. This heat can’t be helping though 🥵 hang in there and please reach out if there’s anything I can help with.
I also took codeine or cocodomal before I went to bed in the hope it would knock me out so I slept better. Do you have any?
I am now 4 weeks post op and having battled an infection, I am on the mend. Yesterday I walked approx 2 miles with no problems and this time last week I wouldn’t have been able to do that.
hang in there you’re doing brilliantly x
I know the area you mean I don’t have a hole or gap there but I was advised to keep an eye on that area (which physically is rather difficult) from a mirror as apparently it’s a point where three separate part are fighting over blood supply which can weaken the area and lead to healing taking a little longer in that area. I know that doesn’t help much but from what I gather it is a common thing and as long as your team are aware of it, they will know how to manage it x
I’m having a super emotional return home, can’t really stop crying for very long, still very tender and reliant on my meds. I did have my last drain removed today and due to return next week for another check of incisions etc. they seem pleased that all is as it should be, I just really am struggling to Find comfortable positions and anything to focus on!
re the nipple situation, I basically told them during my consultations that I was really not all fussed about having one on new boob basically because I just feel it’s not really that important to how I feel about the boob, but I can get that’s not everyone’s feeling. Maybe I will change my mind but for now I’m quite happy just to try and find a way back to being pain free, comfortable and able to smile 😊 xx
@KazzaH @weejeannie how are you getting on? I think I was on a crazy high after the op - probably relief - and now have come down to earth a bit.
My infection has cleared but I still have some ‘fat necrosis’ that you can feel through the skin. There’s nothing I can do apart from massage and wait for it to go away.
I have been asked what I want to do about my nipple. Tattoo or reconstruction. Have you thought about that yet?
hope you’re managing to get some sleep in this unbelievably hot weather 🥵🥵
@KazzaH sorry yours is causing you problems too. I don’t think I have an open drain hole. To drain it they inserted a syringe and pulled out all the fluid. They then sent off the fluid to see if there was an infection and put me on antibiotics. They were hesitant to do this as it could of course introduce new infection in the fresh injection site. I was then sent for an ultrasound a few days later to check it wasn’t a deep infection and just a surface seroma.
This worked to some extent, then after a shower, one of my stitches around the nipple started to ooze a little and then drip (it’s grim, apologies). I was at the dressings clinic the next day and showed them. The consultant decided to ‘drain’ it manually - so essentially squeeze it - from this open area around the stitch. It cleared a lot of the liquid again. I was asked to do this each day after a shower until it cleared, which I think it is now. Interestingly they said it was fat necrosis from the mastectomy and nothing to worry about.
I was also given lots of sterile dressings to cover it afterwards. I am 4 weeks post op and finally feel it’s healing.
Are you still in pain? I am still taking painkillers everyday
Have you by chance got a drain hole still on the T-junction?
I didn't get my infected one drained and so it's been a daily yuk of seeping through gauze and into bras.
I had dressings clinic yesterday ad they put iodine patches on a couple of 'wet' areas but just gauze on T-junction of the infected breast. Then because the iodine has worked amazingly well elsewhere, I can now see the bottom and there's a perfectly formed hole the size of one of those straws you'd put in a child's box of juice, just on the reduced breast that's leaking, the reconstructed one has closed up.
Not sure what to do?
@weejeannie I’m so pleased the surgery is done. The wait is terrible isn’t it. I agree with @KazzaH give in to the tiredness. Make sure you take all the drugs to keep the pain away. I am 3 weeks post op and still having a daily nap and taking meds 4 times a day. Lean on people and take all the help you can get. I have 2 children (6 & 4) and my next door Neighbour dropped in dinners and I ordered Gousto meals for the first couple of weeks when I knew I couldn’t do it myself.
The swelling is finally going down on my new boob and it’s looking good 😊 I also got an infection and have been on antibiotics for a week. I had to have it ‘drained’ too which was a bit grim but definitely brought the swelling down.
So glad we can compare notes and share our experiences. Massive well done on getting through this hurdle 🙌🏻
So pleased to hear that it’s gone well for you and you’ve got the first bit over. I think that’s a massive hurdle for you and great you think they’re cute too!
Give into the tiredness, it’s a great healer.
I’ve had a couple of hitches along the way, firstly one of the drains snapped inside me on removal, but it was a quick 15 minute op and was sorted and now I have an infection and a leak on my reduced boob, so I’m loaded with antibiotics. I can feel the rest of me healing though and think with something as major as this there may be challenges to overcome. I’m looking forward to getting the tape off on Friday.
I was expecting my results today, but they’re not through for another week due to pathologist workload 🥺
thank you both,
surgery seems to have gone well, I’m am incredibly tired, achey, badly bruised have quite low blood pressure, and may require a blood transfusion the morning but to be honest I’m just so delighted this first bit id over! So surprised at my cute my wee bobbies! Your support I feel has given me confidence. Can’t wait to get my life back and make it new Xx
Hi @LMH @Louise,
Between Christmas and New Year always a time for feasting in my book!
You’re welcome to share the bionics 😁 I’m glad you’re pleased with how it looks.
I’ve got my oncology appointment around 6 today by telephone as husband had taken Friday off for plastic and dressing appointment. Can’t lie, I’m counting the minutes.
Pain is lessened by the day, but I had my other boob reduced a bit and perked at the same time and it’s got a pesky infection. Went back to hospital Monday night and was seen straight away. Absolutely brilliant care.
What day are you back for your results? Xx
@KazzaH I like the name bionic boob! I need to think of a name for mine. I have finally taken a good look at it, and amazed at natural it looks. It is however much perkier than the other one. Not sure there’s much I can do about that .. guess the new one might droop a bit over time 😊
I kind of feel I’m in that time between Christmas and new year - where I don’t know what day it is - so looking forward to my oncologist appointment next week.
how are you getting on? How is the pain?
@weejeannie thinking of you. Hope the operation went well yesterday. Look forward to hearing from you soon. Louise
Just to say I’m thinking about you and wishing you all the best for your surgery in the morning.
See you on the other side.
love Kaz xx
It sounds like you are doing so well with your exercise, I agree about the waking soreness.
I’ve just bought one of the over the door ropes from Amazon as I think it helped with the mastectomy arm in hospital.
I’m sure I’m not the first but I’ve decided to call it my bionic boob 😁😁.
I found the wait the worse and it’s been better since I got going.
I had a bit of a weird night last night as I think the stronger drugs left my body, but then I slept well, walked a bit today and slept in between. I’ve come to bed having walked 4.5k steps. I’m really pleased.
I kept the pain killers topped up and it’s allowed me to walk quite a bit in hospital and straighten my body well, without stretching it.
@LMH Do you have puckers at the sides of your tummy scar that pull and weep a little?
@weejeannie Please ask if you need anything I’m happy to help xx
This is great so glad you’re having a good experience with your surgery good luck in the weeks to come getting rid of the lovely stocking etc. X
Good luck for Tuesday hope all goes well 🤞
@KazzaH yay! Such a positive post at only one week post surgery. I am so pleased you’re happy with the results. I agree, I feel completely like myself too. As I only had one breast done, then I’m yet to see how well they match up as the new one will definitely be perkier. I really don’t mind to be honest.
I was worried about the tummy scar. It’s big, but mine will also be under the knicker line, so less intrusive than I expected. I am wearing the support knickers and bra for 6 weeks day and night which in this weather is a challenge.
I am following the Physio exercises 3 times a day. I have less movement in my affected side, but it’s getting there. Still taking all the painkillers though as it’s painful when I first wake up in the morning.
keep in touch and let me know how you’re getting on. Louise x
i came home yesterday after immediate DIEP reconstruction, I can’t believe the results are amazing.
This time last week I went in with 2 full and large size breasts (HH) and today I have 2 full and large size breasts, (potentially a F), made from my own tissue and considerably more perky than this time last week.
My tummy is flat and most of all I feel like me.
I am a bit of a patchwork quilt at the moment out of clothes, but even in underwear the scars aren’t visible. For me, it’s a gift cancer couldn’t take from me. My tummy has kept my identity as a woman.
i May be in a honeymoon period, but today I thoroughly recommend it.
Happy to answer questions and hope it helps xx
@birdbrain ah thank you, I shall look into the bras and also the arm pillows, these sound fab! Xx
@LMH @Thank you for that, I think I have some extenders so will definitely look them out. I will try to work out how w to msg you privately and get back to you if I have any success.
hope you are still doing well considering, take care and thanks I am sure I will think of something else to ask. Xx
I bought 2 bras from m&s and 2 from asda the front fastening ones and apart from the m&s ones being a nicer softer material they were not any more comfortable considering they were quite a bit dearer, i bought 2 sizes bigger. I had a binder which the hospital gave me for my belly because i was in a trial. something i am finding really great is the arm pillows from pillow pals ( i had a full axil clearance) its a charity on facebook and some lovely ladies make them and send them and you only have to pay the postage.
good luck x
@weejeannieof course. The bras I brought with me wouldn’t fasten at the back as I was too swollen. My husband had to get me a 40 D (I’m usually a 36D). It was explained that I needed to wear the bra straight away as I also have big breasts and needed immediate support. A bra extender would have worked if I had one.
I’m at the Royal Marsden and the breast care nurses sent me an email with links to bras and support knickers - from Matalan and Asda - so I literally needed to click to buy. If you can work out how to private message me I will send you the email. They advised to go one back size bigger with the bra but I ended up needing 2 sizes bigger. With the knickers, go for your usual size.
Thank you so much for posting this message.
it’s reassuring to know there is someone out there going through what I will be and that my nerves and concerns are normal.
I’m glad you seem to be doing well and sounding so positive.
if and when you get a chance or feel up to it I wonder if you could advise on what type of underwear you were advised to have for post surgery, I have a rough idea but being a big boob lady just bow and not really knowing what size I will be is making planning a little awkward, I suppose there will be swelling and dressings anyway so knowing a true size will be difficult, sorry for rambling…
im so grateful to you for posting. Thanks xx
@weejeannie I am sorry to hear you’re having such a rough time. I am 2 days post DIEP and am happy to answer any questions. As you mention the recovery takes a long time and I’m only at the start of it, but so far no regrets.
I have a 6 year old and 4 year old and I am also concerned about how I will beable to look after them. I have my mum coming to stay the day I come out of hospital for a couple of weeks the hospital have just told me to take it really slowly. I started Physio yesterday with some light shoulder and arm exercises.
the new breast feels very real - warm and soft - although slightly bigger than my other breast. It was mentioned they could liposuction it (if I wanted) to make it a better match.
anyway, happy to answer and questions and best of luck. Louise
I had grade 3 TNBC, my treatment was successfully completed, chemo wide local excision and radiotherapy-in 2020 unfortunately my breast developed a complex abscess six months after my treatment was complete & despite several surgeries my breast tissue will not heal. I now have a date for surgery for DIEP as it’s felt this is the only way for my body to heal and put an end to recurring infection. I am incredibly nervous and definitely frightened, I have a six year old who has seen me go through all these treatments, infections and sepsis I just wish I could talk myself into believing this is best for him too, that I have this done, heal and can live, I genuinely don’t care what I look like. The recovery time also concerns me. X
I needed a slightly bigger flap than they first thought but that wasn’t a problem and so far I think it was the right choice and am very happy with the results, it hasn’t been a walk in the park for me personally pain wise but every day it gets better and better and being home is more relaxing, the worry of the unknown before my op was the horrible part and people saying try not to worry didn’t really help
im sure you will be absolutely fine and soon on the mend x
feel free to ask any questions although it’s still early days for me
@birdbrain thanks for your response. I have now arranged more support for the first month, so fingers crossed that should do it.
are you happy with the results of your DIEP? Did everything go as expected?
Hi I’m 14 days post diep and would not be able to look after two young children but everybody is different, I seem to need quite a bit of pain meds you could be totally different as a lot are
good luck hope it all goes well x
Good morning Louise
I didn’t have children to look after during my recovery so I really cannot say if it would be too much. Remember, you will have quite a few healing wounds stretching across your abdomen and on your chest so you need to be very careful with picking up things, even vacuuming. Your healthcare team will go through all that with you but it might good pre surgery to ask them about your concerns so that you can ensure you have the help you need after for the time you will need it.
thank you so much for your response and advice. You’ve settled my mind that although it’s a big op it’s worth it long term.
the specialist nurse has been fantastic and already prepped me for the op and first part of recovery. I am trying to prep how much help I’m going to need at home (and for how long). I’ll be in hospital for 5 days, then my mum will come for 7 days, followed by my sister for 7 days. At the end of that - so nearly 3 weeks - do you think I’ll be ok without help? My kids are 6 & 4 and at school thankfully, and a childminder takes them home, and I usually give them their dinner and get them ready for bed. Would that be too much?? I know it’s hard to say but what do you think?
thanks, Louise xx