you should find out about a support group we have one called BRA Breast Reconstruction Awareness you find lots of women in the same boat who are happy to show the finished result some of them many years on. I found it very helpful you will be amazed how good they can make it look.
At a recent hospital appointment I was talking to a lady who had her mastectomy and reconstruction a few weeks ago and they done the nipple at the same time which probably makes more sense in the long run.
Love Paula xx
Sorry to take so long to get back. It sounds like a good idea to make a list - my consultant is great - no complaints there. I thought I wouldn't bother with a nipple but after hearing all about it I think I might. I am from up in the Highlands of Scotland - I must find out if there are any support groups/healthy living things for people with BC going on up here.
Love Lenise XXX
My Cancer was hormone receptive too I was on the Zoladex injections to shut the ovaries down then earlier this year had them removed. I am still on tamoxafin for another 3 years.
I had a catheter for a couple of days like Alsion and it really is nothing to worry about.
The made the nipple by cutting into the new breast and puckering it up for want of a better word, I was awake and watched most of it being done. At first I hated it as it seemed that I had a constant errect nipple but now it has settled down nicely and looks quite normal.
Dont feel that you have to rush your appointments with the consultant I know they have lots to see but it is important that you ask what is going on it is your body. I used to write down all my questions and get my list out that saved a bit of time.
What hospital are you under?
Hi Lenise, i had a catheter in, it was fine, mine was a 9 hour op, so it just saves the surgeon slipping whilst he's snipping!!!!!!!!! honestly, i didn't feel a thing, they put it in whilst your under, and mine was taken out two days later, no probs at all, believe me you will be fine
lots of love
Thanks for your comments - I am pleased with the decision I made and hearing from people that had immediate recons makes it easier - I think it will be an immense relief to wake up and a boob be there. How did they make the nipple - that is something I will have to think about further down the line. My BC is hormone receptive and although I have to have chemo they say my periods will stop but will come back (I am 43). Is your cancer hormone receptive - is that why you are having ovaries removed? What does Zoladex do? I have been told I will go on tamoxafen after chemo. Really glad that you are well impressed with your recon and the other boob job - some women pay thousands - but I guess we pay in other ways.
I never got round to asking my consultant all the questions as he fitted me in at short notice to get measured up and went over the recon in detail and didn't rush me at all - but I was very aware that he had a waiting room full of women waiting to see him so I didn't ask questions about stuff further down the line.
Can anyone advise - I have just read on another thread that to have the back flap recon they have to put in a catheter - for some reason I hate the thought of this but hopefully that is done after they knock you out to do the op? - I know it is a long operation but this had not occurred to me. Really stupid as I have spent the last month having my boobs inspected by all and sundry.
I had a masectomy and an immediate reconstruction last March (day before my 40th birthday) It is one of the best decsions I made to have the reconstruction done at the same time. (I had the DIEP Flap) It was amazing to think I woke up and still had a clevage. SInce then I have the other boob reduced and lifted and more recently I have had the nipple made, just waiting for my tattoo now and hopefully that is me done.
I was lucky enough not to need radio or chemo just on tamoxafin and up until May Zoladex injection I have since had my ovaries removed.
No one would know to look at me what I have had done they made an amazing job of it. I even wore a bikini on holiday and felt no embarresment what so ever.
These unstable boobs are a damn nuisance! Great to hear about your recon. Like you I am glad that I will go to sleep and wake up with one. Hope your batteries are fully recharged after the holiday and great that you could wear a bikini. I talked to consultant on Wednesday and I am just waiting on a date - hopefully last week in September. Then just chemo to go. Let me know how you get on with your new nipple (surreal conversation) haven't decided if I will go for one yet.
It is great to hear from others about how they are getting on - this is a really useful site but I am getting addicted - I was going to come off at 2.00pm today and get on with the housework but it is after 3.00pm now and I am still on. Really must go and do some work. Take care all. Lots of love.
I was diagnosed with lobular BC earlier this year and had WLE with sentinel node biopsy, which was clear. However, I too had an unstable boob so it had to come off! In April, I had a mastectomy and immediate reconstruction using the DIEP method - I would completely recommend it as you go to sleep with a boob and wake up with one, slighly different I admit. I also had a small implant as I didn't quite have enough tummy. I haven't yet got a new nipple yet, but should get that at the end of the year. My scars are now starting to fade so it should look pretty good soon. I've just come back from a holiday and wore a bikini the whole time - no one could tell which boob had been done!
I also didn't need chemo or rads, which I am SOOOOOOOOOOOOOOO grateful for - am currently on Tamoxifen.
I hope your op goes well - I'm sure it will be just as successful as mine.
Thanks snowwhite & Lenise, your both so kind. I feel a bit better than I did this morning not sure if its because Ive decided to look for a holiday for a weeks break before I go back to uni or maybe its the bottle of wine I opened earlier lol 🙂 You are spot on snowwhite, I am grieving I just don't have time for it. Maybe I should allow myself a short time each week for that. Your also right about breasts being important, I know not everyone feels as strongly about them as I do but I really feel like they were (when I had a real pair) one of the best parts of me. Maybe that's just because I was so proud of them. When I lost a breast I lost all my confidence too. I know I have other good qualities but somehow I cant seem to focus on them. I'm sure a lot of you will understand where I'm coming from. I do feel less of a woman now but that's probably not all down to the mastectomy, ya see I wasn't quite over my husband leaving when I was diagnosed so its probably one thing on top of another. Anyway that's enough of me going on, I am a WOMAN and I will be strong again, stronger than ever even without a partner. I have the love of my kids to get me through this. Oh yeah didn't mention earlier I have a daughter too, she made me a very proud Grandma in December (even though I told her I was to young for that) the most adorable little girl, just like her mam was (and I better say still is lol) 🙂
Take Care All of You, Its Onwards and Upwards from Now On.
Love ya all, Judy X
Judy, sorry to hear your op. has been postponed - the waiting must be really hard. Don't beat yourself up about feeling sorry for yourself - we all do at times - not only are we living with the fear of cancer, surgery, chemo, going bald etc, etc, some are losing/have lost a breast/breasts - it is a hard road that we are all going down - but we will get there! I think snowwhite hit the nail on the head when she said you're grieveing. Your wee lad sounds great and one of these days you will find your prince charming. Keep your chin up.
Hi all, hi Judy
Judy you have every right to feel as you do, you are being really really strong, having to be by the sound of it, what has happened to us is not trivial. People keep beating themselves up about their feelings but breasts are very very important, it is just not true that they don't matter. They are important to sex, and not just to the man, mine were so important to me, to me. My husband is fine about my body, but one on its own doesn't do anything for me, and I am devastated by the loss of my sex life, for me, not for my husband but for me. I would never have sex just for a man, I would never dress just to please a man, I would never do anything I did not want just for a man, my man has to please me as much as I want to please him, so my loss of a breast is about me, not him. He has been superb about it. People keep playing it down all the time. But when you lose a person, when a person dies, you don't say - oh well they weren't that important anyway. So why do we say that about breasts? We don't say that when people lose a limb either.
You can see I'm on a hobby horse here, Judy - so I'll shut up now and just say, you're not self-pitying, you're grieving, and I really really want you to meet your dream man, and short of that, big big hugs from me and I'm sure everyone else on here too.
Sorry to here you will lose nipple when all was going well, I'm sure you made right decision for yourself about recon. I know it was right decision for me even though recon not quite right, I couldn't be without it. Thanks for the kind words but I don't feel very strong at the moment, wish I had found this site when I was first diagnosed instead of just a few days ago. Bad news this morning got letter saying my op for next week has been cancelled. It means waiting till xmas now, god this is so depressing at times. All I want is to be as normal as possible again (maybe this is selfish, I should be grateful for being here) this life is so lonely. I just think maybe if i could get on with life and not feel so self-conscious about lop-sided boobs I may meet some-one a bit older than my son to share my life with again. (God I sound so self pitying, I hate this). I am so lucky to have him bless, I get loads of kisses and cuddles off him (he is only 10). Good Luck with your surgery and I hope they get it right first time for you:)
Take Care and stay strong (I think I need to convince my self of that one lol) 🙂
Visited my consultant yesterday and have decided to go for the mastectomy/reconstruction - it is a weight off my mind just having made the decisions - so I am just waiting on a date now - think he is hoping for the last week in September. Whilst there he removed a syringeful of fluid from armpit - I didn't even realise it was gathering but had noticed a bit of tightening on the top of my back. He went over the back flap recon. I will lose areola and nipple which is a shame as he removed them to do the WLE 3 weeks ago and they were looking really good and still in perfect working order (never mind).
Judy it sounds as if you have had a really difficult time of it - good luck for 19th with your new implant - I was also like you and felt it would be better for me to have immediate recon. - you must be very positive to have gone through all this and to be nearly out the other side and still strong.
Take care and once again good luck for 19th.
this is my first time on this site too. I was in a very similar situation to you in Jan 06. I was 38 & diagnosed with IDC also grade 3. I had a lumpectomy and lymph node clearance only to be told 10 days later things didn't look quite right. I was told i would need a mastectomy. One node was also affected so i had to have chemo followed by rads then onto tamoxifen for 5 yr as my cancer was oestrogen receptive+. I was offered imm recon as they were unsure about me having rads at that point. They used my LD Muscle from my back & an implant, I don't think I could of coped without the imm recon. I was very lucky as they were able to save my nipple too. Unfortunately my recon wasn't a 100% successful. After the swelling went down which took about 8 weeks it was evident that my implant had slipped and my surgeon had also miss judged my size as my new breast was about 1 cup size smaller than my natural one. It has been really uncomfortable for the past 18 month, can you imagine what it would be like sleeping with a tennis ball under your side (not nice, if i do say so myself). Wouldn't have been as bad if it was the other side, how come it always affects the side you sleep on. Well I'm finally going back in on 19th of this month (fingers crossed) to have my implant removed, a larger one put in and repositioned. Then its going to be another long wait to get my uplift on the other side so that I have a matching pair again. Through all of my treatment I found staying positive and telling my self it wasn't that bad, really helped. I can say physically I almost sailed through the chemo and rads and I'm sure its because I was determined I wouldn't be ill. It didn't take long for me to get approx 95% of the mobility back in affected arm. For me being lop-sided all this time has been the hardest. I have remained very strong throughout and you must do the same. You will be great and so much stronger when you come out the other side. You are very lucky to have the support of your husband, family, friends and now the new ones I'm sure you have found on this site.
Good Luck & Take Care.
Hi Lenise, yes i am hormone receptive, i was on tamoxifen, but i do seem to get every side effect under the sun!!!!!!!! am now on Zoladex, and will be having my ovaries out before the end of the year i hope, but its a very individual thing, its all very dependant on age, and what treatment you have, we are all so individual, i bet none of us on here has had exactly the same treatment. we are all very unique
lots of love
Mizzy, good luck with your WLE on 17th - you always have the option of going for a mastectomy if necessary but who knows maybe it won't go that far - the waiting for the results is a long haul - but here's hoping the time goes quickly and the results are good. I have my appointment tomorrow (Wednesday) to talk about my mastectomy or mastectomy/reconstruction and it will be good to make a decision and get a date for surgery.
Sarah, thanks for all your thoughts and comments it really helps - hope surgery goes well XX
Alison - thanks for the info - is your cancer hormone receptive? is that why you are having ovaries removed? Mine is hormone receptive but I haven't got as far as thinking about that stage yet, you mention a couple of things that I have never heard of yet (zoladex and aromatase inhibitor) so when the time comes I will do some more reading.
When I first came on the site I was really sad to read about so many women going through this but the forum is so full of people that are so positive, full of life and there is always someone there with encouragement for anyone that is having a bad time - it really is a godsend.
On a lighter note - my mom in law (who is a lovely, rather large women) offered my a chunk of buttock to use as an implant if I needed it, my sister offered me her 3rd nipple and my friend said I should take this opportunity and go for a Dolly Parton (think she forgot I was only having one breast done) - if we didn't have a sense of humour/friends/family to help us through this it would be very hard. Lots of love.
Hi Lensie, i didn't have to have chemo or rads, but my surgeon did say that had i have needed rads then he would have put an implant in then done the op for the back muscle at a later date, due to the shrinkage with rads, they use the whole muscle, and i have a little implant under that, its only just over two months since i had it done, so will see the surgeon again in october to see about whether it needs pumping up or not, think it will, then he will make me a nipple and then i'll have it tattooed to match the other side, we are so lucky that we have surgeons who can do this, sleep wise, it was a bit uncomfy at first as i used to sleep on my left side, now i can stay on my right side for so long, then i end up on my back, (poor hubby has to put up with the snoring!!!) treatment wise, i did start on tamoxifen, it really didn't suit me, so am now on zoladex and hoping to have the ovaries out by the end of the year, then i'll be on an aromatase inhibitor for five years i think. if you go to www.cancerbackup.com it will give you all the details of this surgery, and has images as well. hope this helps
lots of love
Hi Lenise, sorry you have had to join us but I am sure you will find great support and friendship here.
Brief summary of me - 1.4mm lump in Sep 03 had WLE (1 node involved), chemo, rads, tamoxifen, now have DCIS so going for full mastectomy with immediate recon from back flap and implant. Surgeon is not sure which implant I will need until in op - either plain implant or permanent one with expander inside.
From what I understand type or recon can largely depend on whether rads are needed or not? If you don't need rads then I think you can have immediate recon but I think options of recon are more limited if rads are needed. Because I had rads I have to have an implant as well as back muscle due to skin and tissue damage - but if I am honest my skin seems exactly the same as before but apparantly skin is diffrerent afterwards!!
My kids are similar ages, 10 and 15. Teenager are hard work full stop without this added pressure. If your 15 year old is anything like mine (God help you!!) they are struggling with GCSE's and hormones etc and I think are very selfish - that is the nature of being a teenager. Throwing breast cancer into the mix is the last thing they need and throws them completely. They are adult enough to understand the facts but probably not mature enough to deal with emotions. I am sure your daughter is scared, upset and angry and that is why she is being a bit indifferent - . It is so hard when you have got your own emotions to deal with as well. My best advice is try and carry on as normal - kids and teenagers all need routine - I try and give as much information as they need without too much if you understand? This time I actually said to all my friends and family - however well meaning no flowers or cards please - text messages and email are great instead! -last time my house was like a mobile florist which was great but I felt all the cards etc were a constant reminder every day for the kids. Trying to keep life as normal as possible and have my down times when they are out of the house.
Take care and I will keep you posted on how my surgery goes - I feel confident as loads of ladies have told me how pleased they are with their new boobs!!
Lots of love Sarahx x x
Mizzy , similar story to yours in so much as my lumps showed on ultrasound, but not mammogram & both negative at core biospy stage. Once excised came back as one Grade 1 tumor, DCIS and a U3. (Big shock as taken 4 months to get to this stage and I didn't realise biospy results could be incorrect.) Therefore radical mastectomy plus lymph node sampling is the way forward as the whole breast in unstable.(Lenise, I know where you are coming from). I can have immediate reconstruction as no further treatment is anticipated. I saw plastic surgeon today for an initial consultation & have been given a genuine choice between an expander implant or a stomach tram flat as he reckons I would be suitable for both.
I am now currently weighing up the pros and cons of each. Due to my size and weight, I don't have much flesh on my abdomen, so will definitely be at least one- one and half cup size smaller if tram flap. Therefore will need a reduction on the other side. With implant, I have been warned will need a lift & nipple moved on the other side at some point to get a match.
A big issue for me is that I have 2 young children & are active with them, also I am quite sporty, had intended to try and get a London Marathon place for next April and have just taken up triathlon this summer. The implant appeals as it will be easier and quicker to get back to family life, the tram flap as it means less surgery in the long run. But 7-8 hours initially is quite daunting. I am going to look at photos to help with the decision.
Is there anyone out there who has completed either type of reconstruction and gone back to playing sports/running etc. How have you got on with your chosen reconstruction, how much affect does the tram flap really have on the abdomen etc.
Good luck to all who have imminent surgery.
Hi Mizzy. I had wle a week and a half ago. My tumour was eventually shown to be around 30mm. My surgeon gave me a choice between mast + immediate recon or wle and lymph node sampling with a view to mini flap recon or (if tumour did not have good healthy margin) mast and flap recon. I had already decided that I liked and trusted my surgeon (who is an oncoplastic surgeon, so does the cancer and the recon and is very well thought of) so I took his recommendation. I got the feeling that he cared very much about keeping as much breast as possible. I also thought that he knew a lot more about it than me and was very happy to take his recommendation, which he did not in any way force upon me. I'm not the sort of person who is intimidated by highly educated professionals, but I did trust this man and that's why I took the decision to have a wle. Also, the position of the tumour meant that if I had a wle and then only had to have the gap filled in, I could keep all of my nipple! I have full feeling in it, which is great. Anyway, I'll get my results soon and then we'll see whether it's the full mast.
I am 44, no kids, one fiance.
Best of luck to you, mizzy.
my lump also did'nt show up on a mammogram also my core biopsy came back clear but i was advised to have the lump out anyway which i did and it came back idc grade 3 with no clear margins so i have had to make the choice between WLE or mastectomy + node clearance i have made the choice of wle which will take place on the 17th sept my surgeon / partner /family are all behind me in this decision i have noticed on this site that most women seem to go for mastectomy and i must admit it makes me question my decision but i still come back to the thought that hopefully i will get clear margins and keep my breast
my surgeon / breast care nurse are happy to go along with my choice and i do understand that there is a chance that it may come down to a mastectomy in the future but one step at a time
anyone else chose WLE over mastectomy and how did you get on ?
LOVE TO ALL ON THIS SITE MIZZY xx
Hi Alison, Sinclair, Anne and Judith
Many thanks for all your replies - so nice to talk to you all, wish it was under different circumstances.
Sinclair, I feel as you do that I want immediate reconstruction because life is just easier having two breast, although I often wonder what other people think - but it isn't vanity it has never been about feeling less of a woman it's all about getting rid of the cancer and I don't think I would have the courage for surgery further down the line. If there is one thing the cancer has given me it's the realisation that lots of silly things don't really matter. Glad to hear you have got your movement back in your arm - I was out weeding in the garden today and tried to throw a slug out of my veg patch with my bad arm and got a really sore shooting pain up my arm - so the slug got the last laugh, it is taking me longer to get full movement back after complete node removal than I thought. Has your chemo finished and are you on to radiotherapy now? XX
Alison, thanks for all the info, I didn't know about the expander - it just makes it easier to decide having all the info. What stage of your treatment are you at now? Were they able to take enough from your back to make the complete breast or did they also use an implant - I think they said I would have to have an implant as well as the bit from the back. What position did you sleep in at night?
Anne, good luck with your reconstruction, is it the one where they use the back flap - I think that is the only one I have been offered - not sure that they will find much on my back, I am a size 12, but I have plenty they could take from the tummy (could end up like Dolly Parton if they use my tummy). Best of luck. XX
Judith, is your tummy flatter than it was after the operation? Is it strange being back at work and do the people you work with treat you any differently or did it get back to normal quickly? XX
Really lovely talking to you all - I was told by consultant when I had WLE and complete node removal that I would need radiotherapy and chemo, but now that I am having mastectomy and reconstruction they say I don't need radiotherapy any more as the breast is being removed but some people seem to have both. Do any of you worry about your other breast (I had 2 benign cysts removed from my other breast 28 years ago when I was 16) and have you been offered any scans for it - I had a mammogram on both breasts at my first appointment but not a thing showed up ( even though my lump was 2cm) as they say I have very dense breasts so I don't have much faith in mammograms (at least not for me). Are you're children taking it ok, my 15 year old is very unconcerned about my illness to the point of being hurtful and this is just not her, she has always been a very loving daughter so I am putting it down to it just being her way of dealing with it. I am trying not to let my illness dominate our life.
Lovely speaking to you all, take care, Lenise XXX
I had imm. recon in Dec 2006, the one I went for was tram flap (stomach). The stomach wound was difficult at times but not painful, it was just learning what you could and couldn't do when you came out of hospital. I went walking everyday and built myself up that way.
I reacon I could have gone back to work after about 10 week no problem (office job) but then I had have chemo which put me right back, so I have only just returned to work in July.
Tram flap sound very scary I think and the 7 hour op can't be taken lightly, but I am really really pleased with the results and I am now waiting to have the nipple recon in a couple of months.
I don't regret the choice I made. But one think make sure it's your choice, as I did have a few close people saying why to me.
Ask your BC nurse to show you photo's. Or better still my BS showed me photo's from his portfolio, (which I have now given permission to be in )!!!
Hope this helps
I am in a simialr situation to you. Diagnosed IDC 30th July - WLE and SNB 21st august - to be told last week I have lymph node invlovement and also DCIS (not content to have one). Have been told all invasive is out,but not clear margins from DCIS.
I now have three choices, a definete aux. clearance with either another WLE and hope they get all DCIS - if results come back not then to proceed to mast. but that would be two or three weeks later, go straight for mast. + or - reconstruction from back.
I am heading towards recon and I am seeing BCN to look at photos so I make an informed choice. I am just 40 with a 3 and 5 year old. I will then definetly need chemo and rads.
My surgery is booked for 28th of this month with chemo hopefully end Oct.
Look forward to chatting
I am 33 and was diagnosed in May. I think it must be so grim to have a lumpectomy only to be told that the whole thing has to go anyway. I had what looked like 2 lumps so the whole breast was always going to go (and my chest is so small it would have gone even if there had only been one!). Anyway....I had mastectomy and immediate reconstruction from the back, just like Alison. I had spread to 3 nodes which I also found scary. My consultant told me "this does not mean you are going to die from breast cancer" and I repeat that in my head whenever I need to hear it again. Also, the spread did not impact on the subsequent treatment as that remained the same as it had been planned - chemo then radiotherapy.
I agonised over the decision. I largely decided to have immediate reconstruction on what i saw as practical grounds - getting dressed would be easier; buying bras would be easier (I find it hard enough to find nice 32As without restricting the choice even further); taking my 2 year old swimming would be easier. I think people all make the decision for different reasons and it is not an op restricted to young people. Those in hospital with me were 20 to 30 years my senior.
It is an ordeal, but you get through it. I only had one moment of weakness when I was sick after chemo and sore from the op when I wondered if I had bitten off more than I could chew, but that passed really quickly. My physio is going well and I have been out hanging up washing this morning and can reach up to high kitchen shelves (OK, life does have greater thrills, but these are important steps!).
I thought that I would never go back into hospital for later reconstruction as i would not be able to face it. I was going in to get chopped open anyway so I decided the extra days in hospital could be got through. I did worry about that extra time away from my son, but he was fine. I was in for one week.
Please feel free to ask more questions. There are old threads around too which you should be able to track down with the search mechanism. Let us know what you decide to do.
Hi Lenise, i was diagnosed on 6th of june this year, i am 45, with three children, 15, 17, 25, i had some lymphs removed, which luckily were clear, then i had a full left sided mastectomy with immediate back flap recon, that's where they use the back muscle to fill the breast area, had my lymph's not been clear, then i would have had to have an implant in then rads, due to the skin shrinkage that you can get with rads, then the back muscle put in at a later date. i am glad i had the immediate recon as it means less operations, and also, if you have a recon later they have to use an expander implant to stretch the skin. at the end of the day, its your choice, and whatever you choose will be right for you.
lots of love
This is my first time on the site - just wanted to know if there was anyone out there in a similar position to me or a bit further forward. I am 43 with two children of 11 and 15 and I was diagnosed with IDC Grade 3 on 15 August 2007, had lump and all lymph nodes removed a week later and just found out on Friday that I have to have a mastectomy as my breast is still unstable (keep waiting for it to fall off) they also found cancer cells in one of the lymph nodes (bit scary). Think I want the reconstruction done at the same time as mastectomy but finding it hard to decide. Waiting on an appointment to discuss with consultant. Would dearly love to talk to anyone of a similar age/in a similar position. Everyone, (husband, family, friends) have been so supportive but just want to talk to someone who is also going through it.