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Just had LD Reconstruction and need advice about being brave

25 REPLIES 25
Guest user
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Re: Just had LD Reconstruction and need advice about being brave

Hi

I was 36 and had a double mascetomy, through choice, and the double reconstruction. I would strongly advise them both done and then reconstruction will look even! The worst thing I felt was the shock. I am nearly 3.5 yrs on and I still have a wobble, but when you are young cancer is so off of your radar, it takes time to come to terms with. The pain does go, but if offered fat transferel DONT go for it the pain was worse than double mascetomy - NO JOKE!!! Am now quite happy with new boobs, but they can take several months to look normal, because of swelling and scaring etc.

Guest user
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Re: Just had LD Reconstruction and need advice about being brave

Hi hobo

I just wanted to say that I relate a lot to what you have posted as I have been through similar things. I am also 32, and my mother passed away a few years ago. I had a mastectomy with implant based reconstruction and also felt quite alone and left to myself in the hospital. I found it hard to look at myself and would feel sick when I showered, but it got much better with time. After surgery, my boyfriend and I went through fertility treatment to freeze some embryos and I have now started chemo. Everything seems to move so fast but if you take things one step at a time it becomes manageable. Wishing you all the best, Lacuna.

VerityC
Member

Re: Just had LD Reconstruction and need advice about being brave

You are doing well hobo!! It seems you have been through an awful lot so it is wonderful to read that you can see light at the end of the tunnel.
Good luck tomorrow. I hope all goes well.

V xx

RevCat
Member

Re: Just had LD Reconstruction and need advice about being brave

Well done Hobo, just take it at your own pace and do what works for you - there is no 'right' way to face this, if you feel the need to keep a top on in the bath that's completely fine. I will be thinking of you tomorrow, and in the coming days as you begin the IVF process... hopefully it will be successful for you and you'll get some good embryos to freeze.

hobo
Member

Re: Just had LD Reconstruction and need advice about being brave

I have managed to look again today, i got a bath but with my top on, i dont dare not to just yet. im back at the hospital tomorrow to find out all my results hopefully, i feel like im walking a bit faster and i have also got a 20min phsyio appoint tomorrow. im starting to see light at the end of the tunnel now. our next hrdle is to have IVF drugs in over a week so can attempt to freeze some embryos. me and my OH were two weeks away from having IVF anyway before diagnosed. A double blow. I feel like i can face alot more now 🙂 thank you RevCat for the link xx

scottishlass
Member

Re: Just had LD Reconstruction and need advice about being brave

Hobo, I have just read your thread for the first time today and already you sound so much better. It is a very difficult time both physically and emotionally but this is the place to pour your heart our because we know just how you feel.
I had an LD flap done with reconstruction a long time ago and reading everyone's comments made me realise just what a journey ( don't like that phrase much) it has been.
I had my LD flap done 23 years ago and it is still looking good....It is probably older than many of the young women on here! But it still looks and feels good and I feel like myself again. There were no forums way back then and I felt so alone. I was 39. But just to say I wish you all the best and to ask you to try to take one day at a time. Best wishes for a speedy recovery. Val

VerityC
Member

Re: Just had LD Reconstruction and need advice about being brave

Morning hobo,

I am so pleased that you are feeling better and have looked at your breast. Well done!! Your partner and sister must be comforted by seeing you more relaxed too. That is great!
Look after yourself. I hope things continue to get easier for you.

All the very best,
V xx

Guest user
Not applicable

Re: Just had LD Reconstruction and need advice about being brave

Hello Lovely

I had my LD last June (immediate). It can still feel tight but really nothing too bad.

Have you been offered physio? If not ask for it. I asked and got a twice weekly massage for 6 wweks. Well done for looking, I looked straight away but the nurse was worried about my reaction. I named my recon Babs. She has an implant too and so is much perkier than how God intended! i counter this by wearing just one stick-on bra cup. You can get them cheaply on line.

Keep with the exercises, i did/do them in the shower, using the tiles as markers of my progress.

Dont beat yourself up, youve had a tough time and are allowed to feel sad. However, saying that, dont let life pass by. Grab it with both hands and enjoy. Me and Babs are!

Guest user
Not applicable

Re: Just had LD Reconstruction and need advice about being brave

Hi Hobo
I have been reading your posts and am so sorry to hear that you had a bad experience while in hospital . As Revcat says just take one day at a time and don't push yourself to hard it's still very early days . I had my LD recon in November 2011 and now 4 months on all is going well i found that my physio gave me fantastic advice and exercises to do which helped my recovery . The strange feelings go on for some time but you tend to forget about them after a while . I started driving at 6 weeks but only short journeys as mine was on the left side and it felt a bit uncomfortable changing gear . It sounds like you are doing well and have made great progress the last few days i wish you well for the future
Take care
xx

RevCat
Member

Re: Just had LD Reconstruction and need advice about being brave

WOW! Hobo, well done! That sounds like some giant leaps never mind steps forward! WELL DONE.

It must be so hard, being so young and no Mum to turn to... my Dad died when I was in my twenties but nothing to compare with losing your Mum.

Just take it one step at a time. Make sure you get plnety of gentle cuddles and lots of love from you partner as you build up your strength.

Reckon a little tipple of your favourite sort is called for tonight...

\~/ a toast to Hobo

PS I just checked the links for the post op exercises and the one you want is this one: http://www2.breastcancercare.org.uk/sites/default/files/Getting%20fitter,%20feeling%20stronger%20lea... (the one higher up this thread is for a bit later on, once ypu've finished treatment)

hobo
Member

Re: Just had LD Reconstruction and need advice about being brave

i cant tell you how much help your comments have been today and i will no doubt reread them a few times. i woke up this morning teary, wondering if il always feel like this and if i will ever face my new image! well from reading your comments i can proudly say that i have looked at my breasts and i have had a shower! i even showed my breasts to my partner and sister. we all thought it would take weeks to make these steps the way i have been feeling, i can honestly say its from reading these posts so thank you with all my heart, thats all i wanted, some guidance, im a young 32 year old who lost my mum at a young age and have had to deal with alot of things but at times like this i want someone to guide me and this forum has done that! im very emotional typing this but for a change its happy emotions....thank you xxx

VerityC
Member

Re: Just had LD Reconstruction and need advice about being brave

Hi hobo,

I am glad this forum is helping you feel brighter about things. That IS good news!

My mobility is fine now. I can lift a kettle of water without worrying. I can lift a light shopping bag but do take extreme care to use my "good" arm for all but VERY light lifting, purely because I don't wish to take risks.

I shower easily. I no longer feel vulnerable or uncertain or unsteady. I pat my wounds dry but I can see that they are healing well and are fine. I have no pain in my operated side but I do feel a tightness still when I have done my exercises, so clearly they are still "working" that area although they have got easier as time has gone on.

I walk. I have always loved walking but it will take some while to get back to full capacity I think. A couple of weeks ago I managed a 4 mile walk on the flat but since then I have had days when 100 yards seems too much! My energy comes and goes, which I am told is normal. I find that frustrating but I accept that it is just one of those things! I had chemo pre op so I know that my body has had a lot to cope with since Autumn of last year.

I have lots of sleep, including afternoon naps which I was advised by my nurses to do more days than not, and I think that helps both physically and emotionally.

My treatment has now finished, save for ongoing Herceptin infusions once every three weeks and ongoing monitoring - oh, and the all important nipple reconstruction/tattoing to follow in Autumn of this year!!

My emotions are interesting. I think I have been pretty fortunate through this as most of the time I have felt pretty ok. Obviously I have had my moments but I think I could have suffered more than I did. Now I am coming to the end of this chapter though I am feeling a little more emotional than I have. More time to think, I suppose. Also less of a treatment schedule to get through and focus on, and apparently this is normal. Slotting myself back into "normal" life again will be a blessing, but I think too that it will take some resolve and energy. Don't get me wrong - I am VERY grateful to be at this stage, but I am trying to say that if you can, recognise that you do need to give yourself time. Lots of it...and don't get despondent if you seem to be making great strides and then have what you see as a set back. This isn't a steady upward curve.

I hope this helps.I am concerned that you don't seem to have any nursing support. Should you speak to your GP and see if there is a nurse at the surgery or a health visitor of someone who could just give you some comfort? I think some of my concerns post op were actually things that any nurse experienced in surgery coudl help with, like when and how to shower/deal with wounds etc. Sometimes it pays to tell your medics if the care you have received has been less than ideal. They may not know how you feel. They should have made an effort to find out, I grant you, but you may yet get good support if you alert them to your experience/fears.

All the very best. Ask away if there is anything else you would like to know.

V xx

RevCat
Member

Re: Just had LD Reconstruction and need advice about being brave

Mrs Mc... about driving, the leaflet I had said 6 weeks, but I was lucky I got brill advice from the physios and BCNs (makes me feel guilty when I read Hobo's experience)... they said, when you feel you want to start driving go and sit in your car and try all the controls - does it hurt too much or is it OK? If it's OK go round the block (well just a mile at most) slowly and see how it feels. You do need to aware, though, that if you've been told not to drive for X weeks and drive earlier than that and have a crash your insurers might be huffy, even if it's someone else's fault. I was happy to wait the six weeks before even trying. My mx/recon was right sided which is less bad for UK driving - only steering with right hand... if you have left side surgery there are gears (which can make the recon boob twitch!) and handbrakes to deal with. I found turning to look over my left shoulder to reverse quite painful to start with. That and had to use my good (left) hand to open/close the car door.

I walked pretty much from day one - got someone to help me on and off with my coat - and built up gently. I was lucky to have frineds who picked me up by car, took me someowhere nice so we could have a gentle stroll and a coffee. Hill walking is my hobby, and I was back on the hills (albiet with a tiny day sack) within three months. The thing to note, though, is to keep your arm protected from bits or scratches and form sunburn. I usually wear long sleeves outdoors, factor 50 in the sun and Avon Skin So Soft as midge/gnat/mozzy repellent. But for gentle strolls, just a cardi or fleece will be fine! I have been advised to use nordic poles (walking poles) to help reduce potential build up of lymph in my 'at risk' arm.

Regarding lop-sidedness. I was DD before surgery and now have one C and one DD. I use a C-cup bra and squish the bigger one! The wait list for reduction here is incredibly long so I am begining to wonder if I'll actually bother! Funny the difference a year makes.

Oh, yes, comfy bras... I use a Triumph Triactive (not the extreme one) and it is great. Not pretty. But the only one that's really comfy.

Jo_BCC
Member

Re: Just had LD Reconstruction and need advice about being brave

Hi hobo,

Here's the link to BCC's exercise after surgery publication. Hope it helps.

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/getting-fitter-feeling-stron...

Take care,
Jo, Facilitator

Guest user
Not applicable

Re: Just had LD Reconstruction and need advice about being brave

Hi

I had LD reconstruction 3 wks ago. I am doing quite well but am quite lobsided as my surgeon plans to reduce my good breast in a couple of months. Could I ask how long it took some ladies to be able to do ordinary things such as going for nice walks etc as I have gained weight. How long before I can drive?

hobo
Member

Re: Just had LD Reconstruction and need advice about being brave

I cant believe how much these replies are helping me and are giving me a bit more of a positive outlook, although im still sat here building myself up ready to shower! at what stage VerityC are you now 6 weeks on? as in your mobility, bending over, your treatment etc, im walking around like a hunchback! and i know exactly what u mean about a broken wing, thats exactly how im holding mine. the nurse saw me drop my arm straight but she told me to hold it. I wish my breasts were smaller but i am a C cup and so the breast i am left with currently is probably a A cup. I have managed to carry my toiletry bag with my affected arm and i felt quite chuffed with myself, i will start looking into what exactly i am supposed to be doing as i dont want to delay my arm becoming strong again. Because i feel let down by my BCN i feel like i would never turn to them now anyway, so feel like i have to deal with this myself. I just wish i was so relieved for the cancer to have been removed that i could handle seeing the damage so to speak. You all have been amazing with your words of advice and i can honestly say im feeling a bit brighter, especially knowing i wont be like this forever! xx

RevCat
Member

Re: Just had LD Reconstruction and need advice about being brave

Hi Hobo, you asked how long it takes for the strange sensations to pass. To my shame I can't recall exactly, probably a few weeks, though my back was sore to the touch for at least three months! As far as exercises are concenred, BCC have a good leaflet you can download from the main website if your hospital hasn't helped you much. I think over time you probably tune out the odd senstations

fExercises wise, For the first two weeks I was told to do...

shoulder hunches x8
rest hand on shoulder and raise elbow to the side x 8
rest hand and shoulder and raise elbow to the front x 8

Each of these three times a day

Hair brushing with affected arm - that was a joke I was almost bald from chemo! Insult to injury or what?!

Lift nothing heavier than a mug of tea

No extensive reahcing and deifnitely no over head reaching

After two weeks the exercises can be stepped up quite a bit, but you should have been given some advice from a physio as this is techncially an arm trauma as well as breast surgery. You will be surprised how soon you get your arm movement back.

Feel free to ask any question or to PM me if you prefer.

zibzab
Member

Re: Just had LD Reconstruction and need advice about being brave

Hei,hobo

Dont worry so much just allow time to threat yourself. After will see how you will feel. In any case you can always to take down your reconstruction and build up an other one if you wish. Just come down, try to do everything what need to do to help yourshelf.And you will see everything will go to be improve your feeling. I am sorry about my language - I am not English.

VerityC
Member

Re: Just had LD Reconstruction and need advice about being brave

Morning hobo,

SO,SO sorry that you have had such a horrible experience in hospital. This is a terrifying position to be in and you should feel supported and cared for in hospital!! I am especially disappointed in your BCN!!

I had an LD reconstruction (at the same time as mestectomy and lymph node clearance) six weeks ago. I too was terrified of looking at the new breast but when I did (day two, I think) I was relieved. The surgeon had reconstructed it with pretty much the same shape as before. It is marvellous, especially as I have no implant. I am small breasted and he managed to get a good shape just using my own resources. HOWEVER, I remember the fear before I looked. I wish you well and hope that you will be pleased when you do look down. HOWEVER, IF NOT, do not despair. An implant will assist with the finished shape and/or lipofill which your surgeon may have spoken about.

As RevCat says, avail yourself of regular pain relief so that the pain (hopefully) doesn't ever set in. That helps you gain your confidence. A nurse said to me within a few hours of me being back on the ward that I was holding my arm "like a broken wing" and that that would hinder the return of normal function to the arm. I had to steel myself to relax it, but as I did the confidence grew and movement improved gradually.

I remember it could be confusing at times as some nurses seemed to object to me reaching for something with my affected arm, even though I thought it was within my range and capability , and others seemed to encourage it. I think the thing is not to lift too heavy a weight too soon, and not to stretch too far or at an angle that is inappropriate. I do think though that once you are over the inital post op shock that you will start to build your own judgement of what you can do and what is appropriate. For me, I just found the "it isn't a broken wing" statement really helpful.It reminded me of the old "use it or lose it" adage,albeit within sensible limits, and helped me decide what felt natural/do-able.

Six weeks on I am so much stronger with good movement in my affected arm. The exercises that you are given to do are important. I found them really difficult and distressing for the first two or three weeks but now I have a good range of movement and find them much, much easier.

As for bras, I had an infection post op so was late getting into my post op bras. Even then, on days when they were uncomfortable to wear I would take them off after a few hours. I just made sure that my breasts had some support with camisole tops, for example, but I do have small breasts so it may have been different it I did not!

I wish you all the best. Take heart!

Best wishes,

Verity

xx

zibzab
Member

Re: Just had LD Reconstruction and need advice about being brave

It was very interesting to read this conversation. How different are people. I was very happy to awoke without my bad breast because hospital and recovering times were short. I had just chemo and a week after surgery I was able to participate in the 40km cycling marathon.I never have had any pain. One week after surgery I was able to participate in the 40km cycling marathon. The most important thing that I was very confident (sure) that the cancer is gone from my breast forever, since there is no place to return.It somehow gave way to help build up myshelf again. Even did not matter for me if my doctor told it is very small difference to get any problems after simple mastectomy with immediate recon or no recon.Now when I've studied very properly all about reconstruction - only now I'm ready to put my body and immune system in such a big stress as a reconstruction. I somewere red people who use to live without breast are not very happy after reconstruction because they can compare before and after. Of course after simple mx no pain and hand is feeling enough good, (not very streching). So many reserches and trials are showing up completely different things. I wish keep going all of us and doing well. P.S. I saw some womens which did reconstruction useing fat steamcells. They built up all breast. Looked nice. I could not to make difference between natural breast. Same of them did mastectomy throught nipple. This mean no scares at all.

hobo
Member

Re: Just had LD Reconstruction and need advice about being brave

Just read your latest post Nonsuch and it helps me knowing im not the only one struggling to look, it seems so many woman are grateful for the cancer to be removed the wound is bareable but with me it hasnt even sunk in i had cancer! my sister is willing to look at it for me but i cant bare to show anyone incase it scares them, including my OH. Unfortunately my mum passed away. Im determined to look today but dont know how to be brave x

hobo
Member

Re: Just had LD Reconstruction and need advice about being brave

Thank you so much for your replies. You both have given me some hope and as you say im probably at the start of the difficult part. From reading your reply RevCat it seems the reason i am struggling to come to terms with it so much is partly because of how i was treated at the hospital, i have built a fear up in my head to look at myself or even put a bra on because no one has encouraged me to face it. If only they supported me into getting a shower while there etc. I expected my breast care nurse to be there for me but i only saw her on day 4 for 5 minutes, she said ooh i thought you would be home by now and im going on holiday! i havent been shown how to exercise my arm i was just given a sheet of paper on day 4. All the sensations you have described RevCat is exactly what i have, i didnt realise that when you walk you can feel twinges and spasms it really unnerves me. I cant bare to put a bra on as the sensation of my back being touched is so alien. I presumed i would wake up and see a cleavage but he said although he got more muscle than expected there wasnt as much fat so to me it feels like i have just had a mastectomy at the minute. When does the strange sensations calm down? and if i get a shower will it sting? im considering getting a shower with my top on 😞 i dont know how to move forward. I was so strong before my op but now i realise it hadnt sunk in i had cancer and now im struggling to get my head round it. I agree Nonsuch that i need some kind of counselling or something. Luckiliy my sister is helping me through this xx

nonsuch
Member

Re: Just had LD Reconstruction and need advice about being brave

Oh Hobo,
I forgot to say I couldn't bear to look at any of my wounds..so I know where you're coming fro there. I had dsssings on myunder arm, breast, bikini line and navel. All the drains were out before I left hospital, but I hadn't looked even when I showered in hospital. My dressings were taken off two days after I came out, so that was day nine. Getting in my home shower without looking was quite hard, but I managed it..I didn't even want to touch the wound areas when I was washing so I used a new sponge...

I still didnt look! In hindsight I wish I had got a nurse to help me look bit by bit in hospital, but I didn't. I was worried it would look bloody and gory, and anyway, I didn't like the idea of having a wound at all.

I'll tell you why it's a good idea to look though, I got a bit of infection in the underside of my boob, but because I hadn't been looking, I hadn't spotted it to start with. My PS picked it up at a check up. So, eventually, I asked my (grown up) daughter to look at little sections of each of my wounds, so she didn't have a big shock of an unveiling and she talked me through inch my inch. None of it sounded too bad so I started to have a look using a hand mirror. Maybe you could get your OH or mum to do this sort of thing with you?

Well, once I had an infection I had to keep an eye on it...in fact it got worse so I needed a change of antibiotics. It was nothing more than pale pinkness to start with, nothing gory at all. All the wound areas were surprisingly tidy in fact (I'd never seen a new wound before). The GP advised me to taken photos so I could tell if it changed for the worst. They have been quite interesting to look back on, cos I can see how my breast and tummy have changed as they settle down.

I've read somewhere that ladies who have an immediate recon are more distressed and less happy with the recon to start with, than ladies who have a mx first who are so delighted to have a boob back. So I used this to tell myself how it could have been a lot worse. Id rather not have any scars etc, but it couldnt be avoided.
I'm four months down the track now and it's still settling bit, but it's all pretty good already and I'm so pleased I had it done.

nonsuch
Member

Re: Just had LD Reconstruction and need advice about being brave

Hello hobo,

I'm so sorry you're going through this bad patch. It's a real shock to the body... the anaesthetic, the helplessness and dependency and the after effects that change day to day. As Rev cat says, a lot of this is very normal and will pass. The first month is the worst though, and if you haven't had good support it must be very scary.

I was lucky to have an immediate recon with my mx, in my case the DIEP/tummy tuck op. I hated having BC so as something had to be done, I looked on it that I was lucky not to wake up without a boob. The shape, size and feeling does settle down over time, in your case it will definitely improve with the top ups. I was told that the GA and the after effects of the stress beforehand make you feel rotten afterwards. My very low points were the third day after surgery and also day ten, both were Saturdays as it happens. If you can, just be easy on yourself right now, be pampered as much as you can, take the painkillers and work at the exercises bit by bit. The more often you move the arm and shoulder, really the soreness does feel better. Try not to worry too much about what you wear, just go for comfy for a short time? Having said that, a mans shirt is easy to get on, roomy and even looks sexy tied at the waist....

I asked my BCN if she could get me some help to overcome my worries and concerns and I was put in touch with a psychologist who is lovely and a great person to help me come to terms with things. It might be worth asking especially as you had a bad hospital experience... this could be your special reason for needing support quickly now. I just felt I'd take as much help as I could to get over the BC.

Go easy on yourself Hobo,and we are here to support you..

Hugs
Nonsuch xxx

RevCat
Member

Re: Just had LD Reconstruction and need advice about being brave

Hello Hobo, so sorry to read of your awful experience in hospital, and I'm sad too, because I have an LD recon and absolutely love it - what a difference that early experience makes.

The restricted arm movement does ease, and if you can manage to keep up the exercises 'little and often' you will find it improves and is less stiff/sore. Take you pain meds even if you have very little pain, as they will help you stretch just a few mm further than otherwise on those exercises.

I suppose I was lucky, when I woke up post surgery and peeped down at my chest it looked normal - the cleavage was still there! The day after surgery I was sat up and helped into a bra and then pretty much expected to get on with it! This despite four drains...!! After three days I had a shower - so got the first proper look at my new boob, which had steristrips all round the edge of the 'patch' (mine is round) but otherwise I was amazed how lovely it looked. A bit swollen but otherwise great. It took a little while to get used to having no nipple, and to the fact that it was firmer and smaller than my other one, but from day 1 I loved it. Reading your post, I realise I was lucky.

For all that, there are the many things they don't tell you - the numb-but-burned sensation in the under arm where they've removed the nodes, the soreness/tenderness in the wound site on your back, the electric shocks as the nerves mend themselves, the way the muscle can twitch or change shape because it thinks it's still in your back. All I can say is that these things do pass, and mostly quite soon. Sometimes my recon still feels a bit sore or achey, sometimes my back feels tight, sometimes it feels like I have a rugby ball under my arm! But when I get dressed in an open necked blouse or a low-ish fronted top I realise how lucky I am not to have to worry about a falsie shifting or being seen.

The early days are the hardest - you are left quite debilitated and tired by the surgery and probably wonder if you'll ever feel normal again. A little over a year on from my LD flap I am enjoying a full and sometimes hectic life, and have no regrets over my decision. I hope, given time, you might feel the same.

Very, very gentle one-sided hug.

hobo
Member

Just had LD Reconstruction and need advice about being brave

Hello ladies, I am 32 and 8 days ago i had a mastectomy/LD Reconstruction and lymph node removal. I got out of hospital yday. The consultant is adding a implant after the rest of my treatment. I am becoming very withdrawn, I had a horrible experience in hospital, no one spoke to me and for the first three days i was just left in bed. i also had to have a blood transfusion. Now that im out i hope i become more like my old self but i feel like il never be able to move around normal ever again, how long was it before people felt a bit more mobile? also i cant bring myself to look at the breast, please please share your stories to help me come to terms with this, i dont even know how to shower as i wont look at my wound and i have no clothes i can fit into as my arm doesnt move much and it upsets me wearing clothes that show the difference in my breast size :{ please help xx