Breast Cancer Now Forum

Hi,   Thx so much for replying. Very useful. To be honest I'm a bit weary of the standard "the individual reactions vary" approach . I really don't think any other profession would be allowed to fob us off like it and be tolerated. surely some sort of  indication of  outcome on a sliding scale should be possible.   ... View more

Hi.I had a diep several months back and had micropore on all scars except for snb for 6 weeks. They was some slightly contradictory advice re bathing in it..some hospital staff staff said off every week to wash scars but i removed and retaped more often. I think the PS s prefer it as it helps minimise scarring and keloid or hypertrophic tendencies too.. I personally liked it as i didn't have to see my tum scar. Boob also covered in it , very elaborate pattern! ... View more

Hi, I had an immediate diep reconstruction after a dx of lots of DCIS in a b cup. I'm 45 with  3 children aged tween 5 and 13  and boys!! I initially wanted an implant,  an immeduate implant, actually whatever they could do quickest tbh!!! but the more I looked into it and researched I realised implants could be quite a commitment long term ( replacement,  infection risk etc etc) which for me being a hospital-phobe, swung me round. I'd also heard the inflation time can be difficult for some.   My hospital were very balanced with the info I was given but were always honest that a diep would offer some benefits over implants,  feel, softness and particularly symmetry in my case. Although you need a strong-stomach to cope with the description of the op and immediate recovery as , as tends to be the way they tell you every possible hitch and side effect in one go!!   I'm nearly finished,  9 months on, I was lucky enough not to need  any balancing to the other boob and I'd say no one would know what's happened to me in clothes , even underwear and it would take very close scrutiny , even naked to spot!! That , if I allow myself to dwell on it,  is fairly amazing after 3 pregnancies,  alot of breastfeeding and a mastectomy.    I was only in for 3 nights, but again that's largely due to my hospital fears and I know pushing my luck ...first few days  after are grim but doable stomach very tight difficult to walk for few days...  then lots of rest and complete help needed at home for 2-3 weeks then 2ish months to function pretty ok light exercise, driving, kids..I haven't really had any pain outside of the first few weeks.    scarring is something to think about with diep even though I'd seen lots of photos, the reality of a hip to hip scar is a shocker to start with . I also got the occasional tightenings in my stomach particularly if I overdid it for the first few months..   The other issue for me was a fair bit of delayed shock after the main surgery, including nightmares and /or insomnia I'd definitely been on autopilot coping with all the decisions and dx in a quick time frame. I think its unavoidable to some extent but wish I'd been a bit better prepared for its appearance.    Overall I'm pleased I found the nerve to do it and definitely very pleased with the results. Hope helpful for you.       ... View more

Thanks so much for the info and update.. I am just back from an almost tropical day on the southbank with kids and wondered how you had got along with scan, so good to see yr post. I think the radiographer sounds spot on.. definitely sums up my experiences with hormones...my body does the opposite to the expected on them too! CONTRARY!   Hope everything settles down, you should feel very proud  of yourself coping with all this lot...    take care. ... View more

I had DCIS and a micro invasion and 4 clear nodes, so I'm in a slightly odd position re all this,  pretty sure hormone therapy  isn't usually suggested after a DCIS diagnosis  unless there is a significant family history or you really feel anxious  but I've been bumped a stage because of a 1mm invasive component. It got even more 'off-usual' as due to gynae probs I can't take tamoxifen!!! so zoladex was all that was left I guess.   if I hadn't had the experience I had with HT previously and my gynae history I most likely would've given tamoxifen a good chance but bailed if SEs were too much but the risk of its more serious side effects versus benefit for me plus a previous emergency on a similar drug makes my decision much harder. Likewise a change in my diagnosis and pathology would've meant something different and zoladex would be less of a huge hammer .. In the end I just took the route that I found less scary....nowhere near ideal but the only way I could get any peace in my head!   If you are still bleeding tomorrow anything like that heavily I would  perhaps see yr GP just to check in, I think women can sometimes tough it out with gynae bleeding even when its very heavy. Best not to leave it.   hope things improve.     ... View more

Hi Faith50,   I think we've "talked" before re hormone therapy decisions. Very sorry to hear you're struggling, I had similar heavy bleeding two years ago,  on hormone treatment  for fibroids and it was terrifying. With hindsight!! I was a bit too passive in getting mine sorted as I think we can be with gynae stuff, hope you have a much better team.     I have a similar gynae background to you and did some research on zoladex and it seems that erratic bleeding can occur in the first few months for some. I read it was the effect of the lack of hormones on the lining, making it unstable and then prone to breaking down initially....for me I figure I have alot of womb lining due to endo... I stress this is just my take and I think its a rareish occurence..but sometimes just knowing a possibility helps.  So many not clear choices..   hope you get some help and advice soon. ... View more

Hi jillybee, I had some hardness and heat in my  diep reconstruction, about 2 months out from op (at the same time as a throat infection)... the hardness at it's worst encircled most of my reconstruction and was quite sore, like a big flat pebble of the beach or breastfeeding engorgement! I looked for info and thiught it could be fat necrosis. I also had a lot of redness in adominal scar I was told all related to the strep throat  I had picked up so close to op, lots of antibiotics and I tried massage etc.. it then just disappeared after a week or two. Not quite the same thing but I know its such a worry/ nuisance /disappointment when something you're just getting to terms with goes  a bit awry and I think really so little post-op info out there that we can easily access... I'd say always ask the hospital in my experience they try to reassure you and have usually seen most of it before...or the BCC helpline are great . Hope it resolves soon   ... View more

  You are not being unrealistic at all... there is a ton of research out there that shows that a succesful reconstruction (if that's your choice after MX) gives those women an enormous boost with their recovery and getting back to feeling 'normal'.   I had a uni diep reconstruction a few months ago and whilst I have been delighted with the result there are a few areas on the "journey" I've had to push the hospital on/ or challenge what they've offered and I've found myself thinking like you, perhaps it doesn't matter or feeling self-indulgent/vain that I'm hung up on the "finishing touches" but then I tell myself none of this is my choice and I'm determined to get the best for me (and hopefully some women that ask a similar question) that I can.  I also think to myself I hope I'm looking at this for another 40 years or that some people spend hours picking a new car/paint for their sitting room - what ever!! we all just want the best really   Don't feel bad about wanting to look normal or even as good as possible  or politely disagreeing/challenging a PS (although I completely get that when you're there, bare, changed-chest to face with them that can be tricky!!)  whatever job we are in we have to deliver to a certain standard and keep our customers/clients happy or at least be very honest about the possible issues and work hard to put them right..    It's hard to keep getting back in the ring, I really get it but you have every right to it, perhaps take a friend along to help you with the appointment??   Good luck,   ... View more

  Hi crazybird,   I had a MS tram flap four months ago. Had always discussed a DIEP with the surgeon but they were very clear from the start that if  once underway they felt it would be better to swap to MS tram that they would. I have just a small postage stamp of muscle missing and I don't think in the scheme of things this has affected my recovery or a very, very natural and pretty close to the other result (new boob). I dont think it's the plumbing that makes everyone cal DIEP the gold standard rather the result - soft and hopefully maitnenance free. Unusually for me I decided I was way out of my depth re making decisions on the right route with this one, felt OK with the surgical team so trusted them!!   . The decision was made to swap to MST as due to my last baby being a C-section and some previous abdo surgery for a fibroid I had a little bit of damage to one or two of the vessels and surrounding area....   Anyway I was out of hospital within 4 days... took it very easy for 3-4 weeks at home and then after the 6 week check got back to everything I usually do. I have 4 kids so am pretty busy generally so got back to that OK. Getting usual fitness levels back up has been a bit of a slog  but doable.... The scars take a bit of getting used to but I'm assured they fade.   If I can help with anything else please PM ..     ... View more

Hi mel66,   I had my reconstruction, immediate diep in late march and everything you've said I felt too, except perhaps for the squeashmishness! But I am a huge hospital/ being made to rest  phobe and I had to face that. I would guess anyone going for this op feels the same. I certainly didn't know what part I was most worried about most of the time prior to the op, but the reality was copeable with. the drains are annoying rather than painful I found, I took one of my small , glamorous handbags in, which once I was down to one, within 2 days I could pop it in and really with careful clothing noone knew. I adapted one or two of my husbands shirts for night shirts, big and not too girly for me!  I didn't like looking at the drain 'output' either so it lived in the bag and tbh the tubing went clear quite quickly. it is a big surgery for sure, but I was ok to come home after 3 nights with a drain, I was very very tired but felt better at home and it was quieter than hospital even with our 4 kids... just make sure you rope in help, one of my good friends would just appear to blowdry my hair or give me a manicure etc and that was as welcome as all the other more pratical things.  Hopefully you've got some support too. The new boob is a big thing to come to terms with but I just took it steady, looked at it little by little ( a tip from a friend's mum who had one of the first LD flaps a long time ago 15 years or so I think!) and gradually its less odd, still a bit of a headmess how on earth they do it. Keeping busy helped me too before, but I think how you feel now is a normal, sensible reaction to a massive event and any woman who has been there, completely understands. Deep breaths  ... View more

  Thanks -  all very useful for me as a DIEP 'newbie' - sounds like we have had a similar experience with the tummy site scar. I have a couple of big points, at either end that are still very sensitive and making wearing any trousers jeans impossible as they stick up so proudly right where waistbands should lie!! I am a 'jeans girl' so am just thankful its not winter yet 🙂 anyway I think they are pretty easily rectified the more I look into it   Can I just check what you mean by" having the other nipple done first," please? Another lady I know who has had this op mentioned that order of things too I was too scared to ask further.... do you mean tatooing the good' (hate that term but can't think of anything better!!) nipple or replacing it too, to make matching easier?? Which sounds a bit grim....    I think I am up for the same as you in terms of revisions so good to know your recovery was OK - presume it was all under general??   thanks for sharing -        ... View more

Thanks ladies. Toothfairy did you find your swelling went down equally tween top and bottom of breast? I guess it has too!! I am hoping, foolishly, that the top will shrink and the bottom remain as is! Please do let me know how yr revisions go . ... View more

Hi, My tummy button stitches were just "on the turn" I'd say when they were removed, as planned, on day 13. Immediately afterwards my lower adomen looked quite red  and mottled so the surgeon asked if I would take antibiotics for a week . He and clinic nurse dressed it and applied some ointments,  not sure what. I think that site has been a bit yucky but nothing too painful . I would call the hospital if in any doubt.. best to catch anything early. Also they know what is nirmal for this procedure so will reassure you.   I haven't had too much swelling just a little around tummy site at the end of the day.. did your hospital suggest you wear the shapewear pants? I think they are supposed to help manage swelling...but they do look utterly hideous !! its still really early days for you... I definitely saw a huge improvement at the end of week 2 with everything. Hope you find everything settles down too.   ... View more

  Hi,   I had an immediate diep after MX 3 weeks ago. I had a longer than expected surgery at 10 hours. I found the monitoring and constant checks in hospital over the first 48 hours the hardest bit to sope with (but I understand how necessary they are at the same time! just v hard to sleep at all overnight!) and of course all the drains and bits hanging around but I think that is universal and is very quickly over and done with... mine were out except one drain (far more manageable to chuck in a little handbag) in 24 hours.   Initially, after a MX was recommended I was sure I wanted  implant as the surgery/recovery associated with diep didn't sound too appealing but the more I looked into things and spoke with the hospital the more I felt the diep would be better long term for me.   Post -op,  I was up for a v short walk day after and to sit in the chair, but it is painful but I am a massive fidget and a mum of 3 so I can't ever sit still. I bathed the next day after that, again huge effort but I like to be clean... cheers me up... After that I just did short walks all the time round the hospital anywhere.. I did bump into my surgeon, in a random place on day 3, which prompted a little reminder from him for me to take it easy!   I went home on Tuesday, I had the op on Saturday - i think that is pretty fast but I was desperate to sleep in my own bed and I am lucky that my husband could step in and look after house/home for a bit.  For the first week I took it very easy and did do some odd sleeps during the day - which I cut back on as I was then awake overnight... That said, I have just gradually built up again and now 3 weeks on I can do most things except for exercise and cycling which I'm banned from for now.. I work for myself in an office role and am starting up lightly with one client this week and will rebuild from there...if I don't fall asleep!   I should add I've had two homebirths and a recent c section and breast fed for a fairly long period - weirdly all of this helped in this recovery I think. The reconstructed boob does v much remind me of how a boob feels when milk comes in, hard and tense!! but not painful like breastfeeding can be in the early days... The tummy scar has some similarities to a c section but I think mine is so much neater already the nurses in hospital all looked and said to each other : proper plastic stitching!! I guess that sums it up.   I would say buy proper surgical bras rather than the high impact sports bras I was suggested to get  initially, my surgeon felt the sports bras just flatten the new boobs rather than support in a good position! which makes total sense now!!!   All in all.. I am far happier with the initial results than I expected to be and in my recovery path.... in clothes even my husband and closest friends tell me they can't tell - out of clothes  ( without the good support bra) as you would think it looks  quite a bit different but the swelling takes several months to go down..I can see that it will be a good match then..   I do think that the hospital and BCNs have to err on the side of caution and tell you everything that may go wrong (everything!!) so you are prepared  but that can be completely terrifying to hear -   I found it really helpful and reassuring to talk to women who had actually been there and done it! and to think "wow they are back to their lives - it must be OK".. of course they may have had a slightly different experience but it's much more real...   If I can help anyone with anything else, please do let me know. ... View more