My daughter aged 33 who has IBC has been told she has to have a mastectomy on Nov 12th and has been offered an immediate recon using the LD Flap. At the same time she will be having a lump removed from her lower back which has shown some cancer but the chemo has shrunk it quite a bit. Has anyone got advice on the LD Flap as we have read things about shoulder pain and twitching new breast etc. We feel that the best people to ask are the ones who have already had it done. How long in hospital? and what are the pros and cons of this op?
Sue ( naturally worried for my daughter and wish it was me instead)
HI Sue - so sorry you and your daughter are going through this but I am sure yuo will find lots of support and help here.
Good news though - I had the same op as your daughter 4 weeks ago and feel really well and started driving this week already which was a lot sooner than I thought. My new breast looks great and even with a spaghetti stappy top on you can not tell. There is a thread on younger women started by LizzieT( she had the same op as me and on the same day!!) started in September called mastectomy and reconstruction advice which you might want to browse through as lots of ladies gave us both lots of tips for before and after.
I haven’t had any shoulder pain or breast twitching but I know some ladies have. I was in hospital for 4 days and was allowed out with my drains which I had for 2 weeks. The drain on the back can take a while and I still have some fluid ther but it is going down slowly.
Good luck and feel free to ask any questions
Take care
Sarah x x x
Hi Sue
I am posting a link to a Breast Cancer Care publication called ‘Breast Reconstruction’ which you may find helpful for your daughter, it contains information about different types of surgery: breastcancercare.org.uk/docs/breast_reconstruction_dec06_web_0.pdf
Hope you find thispublication useful.
Kind Regards
Sam
Moderator
Breast Cancer Care
HI sue sorry to hear your daughter has been diagnosed with bc I was diagnosed in Sep 05 and also had to have a mastectomy I was offered LD recon and had it done am soooooooooooooooooooooo pleased i did being young myself when diagnosed 24 I felt I could not live without a breast the recon is GREAT I have to admit that I was in alot of pain I was in hospital for 8 days. I have to say though it was worth it the end result is so good you would never know I had had a mastecomy. My back still hurts quite often but I have always had back problems. I was told the recovery period was about 2 months I did have 1 year of work beacuse of all the chemo radio herceptin etc,. I am due to have the implant changed next Thursday as it was damaged during radiotherapy.
Hope all goes well with your daughter
Love clairemm x x x x
Thank you Claire, Sarah and Sam so much for your comments and thoughts … after reading what all the lovely ladies on here have been through I knew it was best to ask you and not just rely on medical notes. I feel so much better already … I guess Nov 12th will be the longest day ever for me … the surgeon did say that it is a long operation. Lisa has had 8 sessions of chemo, the last being Oct 1st so the first round is over and now we are into the 2nd round. The one big draw back is that she has a secondary in the form of a lump in the subcutaneous tissue just above her waist and there was some talk of them not operating at all … that was our lowest point … but as she doesn’t appear to have any other mets they have now decided to go ahead and will remove that as well as doing the mastectomy and recon. I keep telling Lisa to just remind herself that people like Cher and Sharon Osbourne choose to go through loads of radical surgery and maybe we are only so scared because its cancer. I can’t believe that you are feeling so good already Sarah but pleased for you, that will cheer her up… and I am so pleased that your breast recon has been worth it. I will pass on your letters to Lisa… she is 30 by the way and has very brave and down to earth about it all …as long as it will be worth it in the end she will have her reward. She got engaged in the Spring just before the bad news and they would have got married in September had this not all happened but they are now postponing it until she has hair and a ‘new boob’. Her partner is wonderful though and says he couldn’t care less if she has one boob, no boobs or 20 boobs as long as she is well.
Any tips on what to take into hospital or what not to take in?
Thank you again for writing back … I will let you know how she does… good luck to all you brave people who deserve medals for all you have to endure.
Love Sue xx
Hi Sue
I am 43 and was diagnosed in August - had WLE and lymph removal and then 4 weeks later had mastectomy and LD flap reconstruction. That was 3 weeks ago and I am back driving again and spent this afternoon out in the garden just doing light stuff. It hasn’t been easy but I think it is a lot easier than waking up without a breast. I can’t say I have felt any real pain just discomfort although I have experienced back pain - but the new breast is great (still a bit like Jordan but it will go down). The operation is a long one (8 1/2 hours) and I was in hospital for one week and when you wake up after the operation you have drains (I had 3 - one to the breast and two to the back) you also have a catheter and a drip and an oxygen mask but the following day they removed the oxygen/fluid drip and catheter which makes you feel a whole lot better.
I think we all have different experiences and I hope all goes well for your daughter - it sounds as if she has really had a hard time of it. This site is so wonderful and full of supportive people with loads of advice.
Take care and lots of love
Lenise XXX
Hi Sue - just a few things I would recommend your daughter takes in with her: Wet wipes - showering or bathing very hard for a few days if allowed at all, front opening pyjamas, sport bras one back size bigger than usual for swelling, comfy day tracksuits, not flip flops but slippers as you have to wear support stockings for 2 weeks and over feet, big knickers not thongs due to the cathetar, secret support tops for first few days if bras uncomfortable, own pillows/cushions, nice happy photos to look at and easy reading books - nothing too heavy!! Alos the pain killers can make you bunged up so tell Lisa she might need to ask for laxatives!!
I know it seems very daunting now and the first few days are awkward - I didn’t have any pain though as my surgeon put nerve blockers in my back to you can ask about that too.
Take care and thinking of you and Lisa
Sarah x x x
What encouraging news Lenise, thank you so much for that … we would rather know what to expect rather than worry that any pain was not normal.
Also thanks for the info on what to take into hospital Sarah … I thought of ‘proper’ slippers the other day but didn’t get her any … i will now. We will certainly ask about the nerve blockers too. As for bra … i didn’t realise she would be able to wear one so that is also helpful to know. We have an appt with the breast care nurse this week so we can ask about certain things but its still best to get advice from those who have been through it. I thought she would be in hospital at least a week. I am going to take the next week off work (without pay as i don’t have holiday to come) because i just need to be there for her and to stop her doing anything silly … she is fiercely independent … downright stubborn most of the time! in the nicest way though …and i don’t think it has hit her yet just how much she won’t be able to do.
I wish I wasn’t at work the week she is in hospital but I need to be off when she is home … I am only working until 1pm though so can visit her in the afternoons hospital week.
Thank you again
Love Sue xx
Hi Sue.
Thank you from me, too, for the stuff to take to the hospital. I don’t know yet how radical my surgery will be, but this gives me some things to think about, and to shop for.
Hi Everyone. Lisa & i have just got back from seeing the breast care nurse who gave us all the info on the LD op. I must admit it sounded awful the way she put some of it … I am so pleased that we have heard from you who have had it done otherwise Lisa may have been put off. She was told that she would be in a LOT of pain in her back but most of you have said that the painkillers work really well and you have also said that it is more discomfort than pain. She emphasized that the arm exercising must be done after lymph node removal even if it hurts to do it and she said that you must exercise through the pain that exercising might give you otherwise you will suffer later with the cording etc. were you told this? (Sarah, Claire and Lenise) Anyway Lisa still wants to go ahead especially after you have all said that you don’t regret it. Lisa was also told of the risk of infection and how its not rare to get an infection and then the new breast has to be removed. We are beginning to wonder if the breast care nurse is against the recon. I know they have to warn you but it could certainly put someone off who wasn’t as strong willed as Lisa. She has now gone home to read all the info. She will be on Tamoxifen afterwards and we know that brings with it a lot of problems too. She was hoping to start a family next year before all this started but that is well out of the window now. Thank goodness I have written to you all which has given us some hope for this op.
Hi Scottish Hoosier … hope whatever your op entails it goes smoothly too… the girls on here are great.
Sue xx
Meant to say Sarah that the breast care nurse said she hadn’t heard of nerve blockers so Lisa is hoping to see the surgeon again before the surgery on Nov 12th to be able to ask him.
Love sue xx
Hi Sue
You asked about the exercises - and yes it is far better in the long run if she does any exercises the hospital tells her to religiously as it makes all the difference - I was also told to rub aqueous cream into the arm to keep the skin in good condition and not to shave or wax under that arm in the future but I can use an electric razor.
Just for Lisa’s info I got my shower proof plasters removed on Monday and am really pleased with the result - boob and back still very numb and do feel a bit unusual, sometimes it almost feels like sunburn but doesn’t actually hurt. Had to have fluid drained twice from my back but again no pain due to numbness. The nurse said that as everything tightens up I may feel some pain and discomfort. My boob is still a bit big but hopefully it will go down a bit yet. After chemo I think I will go ahead and get the nipple done and tattooed - from what everyone says it turns out quite good.
Tell Lisa that I was able to have a shower on the second day after my op due to the shower proof plasters and I wasn’t sure what to do with the drains so I hung them around my neck to shower - but someone on the site may have a better idea of what to do with them. At other times you keep them in a funky little bag draped across the body.
I don’t regret having the recon done but there were times in the hospital when I felt uncomfortable and especially if I had a bad nights sleep I got very emotional - it is a big decision to make and so far (touch wood) I have been very lucky so I hope everything goes well for Lisa if she decides to go ahead.
Love to you both
Love Lenise XXX
Hi Sue - Glad you have got a bit more info from the breast care nurse. It was my surgeon who did the nerve blocking in surgery - he told me that he tried to isolate the nerves that will cause pain and block them!! I really wasn’t in pain just uncomfortable and felt weird and tight around my chest. I think the pain killers are good though as well - I had a morphine drip for 24 hours.
As for exercises they are the best thing to stop cording - they seem impossible at first but just a little bit each day really helps. I think for the first 3 weeks they are quite limiting until the surgery has settled down - but then you can do more. I also have had physio which has helped.
Good luck
sarah x x x
Thank you again Sarah and Lenise … Lisa says that she feels so much better after reading your posts. We saw the Oncology Consultant this afternoon … he is pleased with how her breast lump and back lump have shrunk and the CT scan didn’t show cancer anywhere else even though they can’t be sure that it won’t ‘pop up’ at some point now that some cells have escaped the breast … we are not thinking about that at this point though as Lisa is getting through this by being optimistic and believing that she can beat it. I honestly think that you have to be positive and don’t give in to it. A lot now depends on the results from the lab of all the bits they take during the surgery … Lisa may have to go onto Tamoxifen but he also said that he may consider Letrozole. Its just a matter of preparing herself mentally for the op now in just over 3 weeks time and making sure she does everything she is told and doesn’t get an infection.
I so hope that you both go on recovering as well as you are now and beat this ‘damned thing’! I will be thinking about you and hope to hear from you soon.
love Sue xx
hi Sue…what fabulous support from all these ladies! I had my first mastectomy and lat dorsi recon in April 05, a week before my 40th birthday. I had a second using the same method last Sept as very strong family history.
I was in hosp for 2 weeks the first time as i reacted badly to the drugs and my liver was quite unhappy with the whole thing. Think it was the very long operation and the amount of drugs needed. Havn’t heard of anyone else with this problem though.
Comparing the two operations the thing that made recovery less easy the first time was the removal of the lymph nodes as i experienced the nerve pain often associated with this which is not too great at the time but does pass…just good to know what it is as could be frightening as wierd form of discomfort often with burning pain. The second was easier as they didn’t touch the nodes.
Also to be honest I had a lot of discomfort from the drains in my back, perhaps as I am quite slim as when I lay back they rubbed against my ribs as the lat dorsi was gone…bit yucky that and a relief when gone. When they take them out I would advise taking a deep breath in then coordinate blowing out very hard with the nurse as she pulls it out as can be a bit uncomfortable otherwise. I bought a Skyeskin, sheepskin, which I took into hosp, much to the amusement of the nurses, for the second op and felt much less discomfort from the drains as had my own comfy padding to lie on. It was a big enough to sit on and extend up my back and a real comfort…rediculous or what! I could not lie flat when had the drains in and found a small neck pillow was good for sleeping in a semi-reclined position.
Good to take in a small mirror as I found it easier to look at my new bits with this than in the big bathroom mirror as i was getting used to it. Also, I’m no good with laxatives so take packets of dried prunes which do the trick.
I found less power in my back in the beginning and that things like drying myself with a towel would make my boob jump which I was told to avid if possible, so used one on the superabsorbent ones which I found easier.
I still have a lot of numbness in my back and my daughter takes great delight poking it to get my attention and me not feeling it. It is certainly weaker having lost both lat dorsi to my boobs but I do think it is still improving…I opened a door of a sliding door of a taxi myself the other day which I found to my horror I could not do due to the power neede in that particular movement. I also cannot vault over walls when out walking as no power to push myself up, or puch myself up to get onto a kitchen worktop so I can get to the top shelf…none of which really matter but are intriguing when you find you can’t do it anymore! With only one gone these little things won’t affect Lisa.
Tamoxifen was a bit of a pain at first with night sweats and hot flushes but homeopathic sepia helped enormously and if they ever reappear, I just take some for a few days and I’m back to normal again. In fact it is great stuff and my PMS has vanished…every cloud has a silver lining…on that note, I went from an FF cup to a B/C cup so the prospect of tucking my boobs into my knickers is not one that concerns me now…hurrah…and I’ll be able to go braless again without tripping over them.
The horror of the whole thing seems far behind me now and i am stronger for the experience. It has been a very difficult 2 1/2 years but I really love my life and appreciate it all the more. The whole thing is so shocking at first and with all the treatments one feels it is never ending but there is light at the end of the tunnel. Your daughter is so lucky to have such an amazing mother. Oh and rescue remedy is good to ‘comfort and reassure’ as it says on the bottle.
I do hope this has helped in some way. my very best wishes to you.
Buff
Hi Buff - thanks for posting about how you are getting on now it is really encouraging. I am due to have my second one done in Feb and was thinking about how it would be to have 2 back muscles missing or moved !! The second one is also prophalatic so good to know that it is easier if lymph nodes aren’t involved.
Not dreading it so much now!
Thanks again
Sarah x
Hi Buff
I echo what Sarah has said … thanks for posting … that is really helpful. As far as we know Lisa only has to have the one side done… a lot will depend on results afterwards I guess. ( Didn’t realize Sarah that you had to have another op in Feb.)
Just over two weeks to go until Nov 12th when Lisa has it done. I just want it over with now and to know that she is safe. Yesterday we went shopping for bits and pieces … Lisa managed to get a couple of light support tops by Sloggi which she thought would be Ok for the first few days … she didn’t like the look of some of the sports bras that we saw yesterday, they looked so heavy and had thickish seams that we thought wouldn’t be good across the new boob. We will go to Marks and have a look… is there anything you suggest? We also got jogging pants and loose tops. Lisa hates the fact that she has put on weight and has to buy bigger anyway but i keep reminding her that if she hadn’t put on that weight then they wouldn’t be able to do this op. The back pain is worrying her ( fiercely independent and can’t bear the thought of being an invalid!) but i keep saying that she must keep thinking that at least she will have a breast and each day will be one day nearer her feeling better and she will have rid her body of this ‘thing’ that threatens to kill her. She also has to have another lump removed from her lower back so she will have another wound to deal with. She is also worried about infection as she has read quite a bit about that. She has been so brave so far and has refused to let it get her down … being very down to earth and often making jokes about it and I am sure she will get through this with her sense of humour and attitude. I have, however, warned her partner that she will have some tears and will be in pain, which will seem out of character, and he must cope with that. If not I am only a few minutes away although she may come here for just a couple of days when she first comes out of hospital. I am taking time off work.
I agree with you Buff that the treatment does seem never ending and we look forward to the day that we can also say that its far behind us. I so hope that you now go on as you are now and can one day vault a wall when on a walk!! You too Sarah. I will keep posting and let you know how Lisa does. Thank you all for your support and postings … no one has really told Lisa what to take into hospital, we have only found out about the bras & jogging pants etc through Sarah. As I said before this is a wonderful site and the only people to ask advice from are the people who have been through it.
Thank you all again
Love Sue x
Hi Sue
I am now five weeks down the line after my recon. and the sloggi/crop top type bra is a really good idea for Lisa - I am still swollen and non of my old bras fit comfortably or the new sports bra I got. Saw consultant today and he says the swelling will reduce and the breast will soften more as time goes on but I may end up slightly bigger on the recon side - small price to pay. Back still feels very strange and numb but it is getting better every week - had to have it drained three times but only small amounts and you don’t feel a thing. Didn’t do my exercises for a few days and regret it as my arm is getting sore so do hassle Lisa to do them religiously - we were told to do them for six months.
Tell Lisa that the removal of the drains is not so much sore but just a strange feeling and the thought is worse than the actual removal - Buff’s idea of breathing through it is sound advice.
Good luck and lots of love to Lisa for 12 November - do please let us know how she gets on.
Sarah best wishes to you for February - what a brave lady.
Love Lenise
XXXX
Thanks Lenise, that will resassure Lisa … she was thinking about getting another couple of the Sloggi/ crop type support tops but wasn’t sure if they would be Ok. She has one white and one black and they fit really well at the moment and are light … not too tight as she went for one size bigger round as Sarah suggested but hold her in ( she is a 36B but has put on a little weight since the chemo) and as you know they have plenty of stretch so I will pop and get her another couple ready. She could imagine wearing them later anyway as they are comfortable. We just felt that the sports bras looked so heavy and as I said the thick seams didn’t look good. I would imagine the Sloggi tops are easy to get on too.
I will certainly let you know how she goes on… can’t wait until Nov 13th when its over!
Love Sue xx
Hi there, its really good that Lisa has put on a bit of weight as she’ll have more to make into a boob! Re the tops, I wouldn’t have been able to get something on over my head for a wee while after the op so PJs with buttons was best. I also took loose bed socks which wear easier to get on over the support stockings. My surgeon wanted me to start moisturizing the boob and my back early on and I tool a non-perfumed cream into hosp to start this off. It is good to do this regularly as deeps skin supple and helps normailise feeling. Also helps to get you used to the new bits of you….and a good job for the partner to get them used to it too. I was terrified of my hubby seeing it but on the 4th day he was asked to stay whilst the surgeon was looking at it and he thought it was marvelous and congratulated her on her heat work. He also asked her if she could use his nipples for me s he didn’t really need them and she even managed to keep a straight face when answering him!
I had a small see through sponge bag which I kept by my bed with hankies, ear plugs, eye mask, (to cut out hosp noises and light when you want a nap), wet ones, travel alarm clock, small mirror, lip balm, money for phone, glasses cleaner, small photo of family, rescue remedy etc. Re infection my mum bought me a small spray called Matron which you can use on tray tops, your hands if need be, good if you need a commode and can’t get to the sink to wash properly. Visitors need to follow the hosp hygiene routine rigorously with hand washing etc.
I too am fiercely independent but please tell Lisa just to take it gently after the op as it is a very big op both physically and emotionally and she needs to let folk look after her for a wee while….there is nothing wrong with being pampered and she deserves to put her feet up and be spoilt a bit!
The bra I wore straight after the op was a shock absorber cotton soft level 3…. I would recommend you buy a bra extender which give you more back width as Lisa will be swollen for a wee while. You can get them in la Senza and maybe maternity shops. Oh and your surgeon may draw on you with pen which comes off on your clothes so don’t wear your best white bra and t-shirt the day before the op…i forgot before the second op and ruined my white t-shirt and bra.
Hi Sarah, I have just posted under ‘Lat Dorsi Reconstruction on other breast – Guildford’ for someone who was asking what it was like with two if you want to have a look.
I was totally traumatized by the whole thing and the wait for the surgery was excruciating. I was terrified but here I am now with it a distant memory, living proof (along with loads of others) that there is light at the end of the tunnel so take heart and just keep putting one foot in front of the other.
love Buff xx