Hi there,
I’m due to have a mastectomy on 11th December and went to see the plastic surgeon about reconstruction but he said he couldn’t do the operation till well into Jan so though I would in some ways of course like a new breast I don’t feel I can wait. I have high grade, widespread DCIS but I’ve had my symptoms for 2 and a half years so am very frightened that it has become invasive. They say they will only be able to tell that when the axillary lymph nodes are out. My priority are my two very young boys, so I want only one op rather than two to recover from so I can be fitter for them - and the p.surgeon said: you really must want reconstruction badly to go through the operation as it is a big op. I’m not sure I want it badly enough. Also, the one he prefers is tram flap and I don’t have enough fat around the stomach (I probably did before Dx but I’ve lost it all - dammit!!) for him to do it.
Has anyone just gone for mastectomy and not reconstruction? Particularly if you are young (I’m 42 but I look very young for my age - though I say it myself!!)
I’m having a mastectomy and lymph node removal, but no reconstruction. I’m 47 but also young in heart and, I think, pretty young-looking for my age. My op is on Wednesday. The one big difference between you and me is that I’m single with no kids.
Anyway, what do you want to know? I didn’t even bother asking my surgeon about reconstruction, because I knew it was a big op and I feel as if I’ve been through enough already and dealing with the mastectomy etc will be about as much as I can cope with. Also, I knew they’d have to take tissue from elsewhere in my body and the thought of having two different sources of pain didn’t exactly appeal. Like you, I don’t have anything spare on my stomach so I think they’d have taken it from my backside, to which I have one word - ouch!!!
Another reason not to go for reconstruction was the risk that if they don’t get all the cancer out, or if it comes back again, treatment with a reconstructed breast in the way is surely going to be more difficult.
I can’t say I’m thrilled by the prospect of wearing a prosthesis for the rest of my life, but right now, it seems like the lesser of two evils. Maybe I’ll consider a reconstruction in a few years’ time, when I’m more confident that I’m completely cured, but somehow, I doubt it. The one downside is my glamorous evening gown, which I love to bits and was a fantastic bargain, but will now probably be too low-cut. I’ll be really sad if I can’t wear it again.
Hi Flaxhigh I am 48 years old and I to think I am young for my age. I had a mastectomy last January and 35 lymph nodes removed.I also had 8 sessions of chemo.I didnt have to have any radiation as they said I was border line whatever that means.I finished treatment in July.I am very happy with just a prostesis it is a new lightweight one.I did consider recon but when they told me it was a 9 hour operation I thought no way I have been through enough. I am now back at work full time again and very happy. It wasent just the operation of recon its the recuperating I felt I couldnt cope with that feeling weak and ill again.I have done so well after my mastectomy I didnt feel my body could take any more. I have bought some lovely bras and you would never know I had a prostesis. I will say the first few weeks after your operation it does feel weird having only one boob but you soon get used to it. It certainly doesnt bother me now as long as I am alive. I have a great husband who never makes a comment If I can help you in anything just let me know. I wish you the very best whatever you decide on. Let me know and take care and good luck with your operation Love Linda xxxx
I’m not young being 58 but like to think I think young. I have never wanted a reconstruction…partly influenced by seeing really great sexy women with one breast at the Hampstead Womens Pond 20 plus years ago.
I never much thought my breast were my ‘best bits’ and I am amazed at how little being one breasted troubles me. I know many women don’t feel like this but it saddens me that no reconstruction is not presented as a positive option and choice by some medics.
my story is perhaps a little different, I was booked for mastectomy, removal of all lymph nodes and a reconstruction using skin and muscle from my back. I was told it would be an eight hour operation but could all be done on the same day so i said why not and was really up for it. Unfortunately on the day of the operation there was a major cock up i was due to go in at 7 am but the letter i received from the hospital said 12pm so unfortunately i could not have the reconstruction done on the same day as the mastectomy, which of course was the important operation. I was given an implant which felt really hard against my skin and did not match at all the other natural breast. Unfortunately i rejected the implant and was really ill resulting in septicaemia which meant i was rushed back into hospital for life saving treatment.
My surgeon is still banging on about reconstruction but like a lot of the other ladies on here, the thought of another major operation fills me with dread, 5 months on and i am just starting a little part time job and am really getting back into the reality of a somewhat ‘normal’ life again, I certainly do not want to take time off work to have another operation, like the other lady i sent my original prothesis back and got a lightweight one which is great, people are amazed when i tell them i wear one! Reconstruction must be up to the individual and a couple i have seen are fantastic but all operations do carry a risk and while i am feeling better i want to carry on that feeling for as long as possible.
Whatever you decide is really up to you and i wish you all the best whatever route you take
I never wanted a reconstruction after my mastectomy in March. I am 46, single. What I am is what I am - take me or leave me. Being one boob less make me ‘interesting’ and certainly no less of a woman!
Janes’s right – do what makes YOU feel most comfortable with yourself. It’s your body!
Thanks all. I think I can handle one breast but it’s all been such a rush. Only last week the radiologist thought my condition was benign and now I’m having a breast off! To be honest I would love to have a reconstruction - particularly as I have only just completely changed my wardrobe to include lots of gorgeous expensive sexy bras and low cut tops - but I am too frightened generally - mainly about them finding invasion and what I might have to face if they do - to go through with an extra operation and anything then going wrong with it. I wish I was braver! I doubt very much I will go under general anaesthetic again just for reconstruction as I don’t want to be away again in hospital from my 2 and 5 year olds if I can help it. So I hope if I go for no reconstruction which I think I probably am going to, that I am making the right choice. Sort of last chance feeling!!
Can only echo what everyone else has said - At the end of the day only you can decide.
I have just had mastectomy, was offered reconstruction but turned it down. I’m 46, consider myself young (ish lol) - but I’m afraid my view was a very selfish one. I am not a vain person, but I do like to wear low cut tops and like you have only recently spent a fortune on a new wardrobe and some very nice lingerie from ann summers lol
However, as far as I was concerned - I didn’t ‘need’ the breast - the only person with a use for it (if that’s the right word!) was my OH - and there was no way I was putting myself through recon just so he felt better! I would add he has never suggested I have recon - reckons there’s 2 handfuls in the remaining one!
Hope you make the decision that is right for you
take care
Sounds like I am in a similar situaton to you flaxhigh.
I had a mastectomy in June and was told prior to the op that it would be at least 6 months before I could have any reconstruction. Then after my op whcih did not go well I have now been told that I cannot have any reconstruction for at least 2 years as I had over 50% of lymph nodes involved - tumour was +10cm.
I have just been fitted with my prosthesis and this has made a huge difference as the soft inplant they give you post op does not feel right at all, whereas the prosthesis is correct size and weight.
I am 39 and was wondering about not having reconstruction, but I think I will have it, but not so much for me as for my husband - I know he struggles with the way I look - not just the lack if breast, but the hair and steroid weight. Don’t get me wrong - he never says anything, but he has been so supportive that if I can do this for him I will!!!
Do you have a partner to discuss this with? Mind you he will probably say the same as my husband does which is “you do what you want I love you whatever” As you have had the decision taken out of your hands for having at the same time as the mastectomy I would wait until you get your fitted prosthesis and then see how you feel… I would also highly recommend buying mastectomy bra with a pocket - the nurses will give you the websites and M&S do them at their bigger stores - seriously takes the hastle out of having the prosthesis and soft inplant. Well worth the money… and no VAT!
Good luck with the op and take your time making your decision post op - all will become clearer!
I had a masectomy in September, and I was offered immediated reconstruction, but I never wanted it. I am 53 but young at heart and have a 12year old daughter, but the thought of such a long op terrified me. OH said it was me not the boob he loved and would go along with my decision and that is the crux of it. It is your decision, consultant told me at check up if I changed my mind at a later date even ten years down the road they would do it. I am fine with my prothesis and you would not know that I have had anything done. The bcn fitted mine and nothing was to much trouble for her, my eldest daughter and I were there for ages but she said it did not matter as she wanted me to be happy with my choice.
Good luck with the op and remember we are all here to help you
hi i am 28 my surgen has told me i have to wait a year before my reconstruction which i was not happy about but im going with the flow. it will get there. im seeing about implants as i have enuf probs with bk and stomach that i dont want either touched. i have medical problems with both and they would just be agravated with the invasivsion of surgery.
Hi:
I had a mastectomy for high grade DCIS in July 06. The surgeon advised me not to have recon at the time as he had a couple of women who had developed infections which delayed their chemotherapy. He was convinced I had some invasive cancer as well as the DCIS and felt I would need a raft of treatment with no delays.
One year and a bit on and I live life to the full, I go swimming 4 times a week, out with my friends, holiday on the beach with my prosthesis. I cant say its interrupted my life much from a physical point of view.
I may have reconstruction, but only when my head is round everything. I could do with the tummy tuck!
I am 38.
Hi I had a mastectomy in April 2004 at the time I didn’t want a reconstructionjust wanted the cancer out. However, if I had to do it all again I would have the reconstruction at the same time, I had mine in August of this year. I waited two years and was quite happy with the prosthesis until I decided that yes, I would like a reconstruction, I opted for a simple expander implant which will be changed in Fabruary of next year. The operation is reasonably short a couple of hours and only involved one night in hospital. I should imagine it will be very much the same when I have my permanent implant.
I am so pleased I had a reconstruction, it makes like so much easier I can wear what I like and in fact when I have finished my treatment and had the other boob matched up I shall have a much better pair of breasts than I had before.
By the way I’m a young 55 and extremely active so did not want to lose back muscle and havn’t enough tummy fat for the other one.
Thought I give you my story as I have had both recon and a mastectomy . When dx for the first time, the surgeon offered immediate recon. He showed me pictures of different options and I had a very long session with BC nurse to decide on most suitable one for me. In the end I chose a saline filled implant, as I did not want to have a possible problem with back muscle or stomach muscles - I am very fit and active. The op was no problem, although very lengthy , and I needed six months of visits to the breast care department for saline injections and then a very small op to remoe the port under my arm (where they were inflating the breast). I was never that pleased with the implant though. I chose not to have nipple recon, as that would have been another op, so the breast never looked normal anyway. The surgeon did offer to ‘match’ my remaining breast by lifting it, but again more surgery, so I declined. It did mean taht I did not have to change my clothes or undies of course, which was a bonus, but any weight gain or loss became very quickly apparent. The other major problem for me was that I could not have rads, as that would have affected the implant and the skin would not have stretched sufficiently. I know things are a bit more advanced now, but at that time that was the situation.
I then had a recurrence some 6 years later and this time the only option was a radical mastectomy and no option of ever having another recon.
I must say that the mastectomy op was a breeze, out of hospital in 5 days, no problems at all and very minimal discomfort. I did find it hard at first to come to term with a prothesis, but my hospital takes you through a very thorough fitting session and I have a very light weight one from Amoena, and bought some lovely coloured undies, and I promise, nobody would guess I had a mastectomy. I also bought lovely swimwear and bikinis, as I am a very keen swimmer (3 - 4 times a week) and with the right swim prothesis, I look as good as everyone else. I can wear all my old low cut tops, just a needs a bit of practice of finding the right mastectomy bra and I am about to try the self adhesive prothesis - have appt. with the BC nurse just after Xmas, so let you know what that looks like. My husband is ok with my appearance, he says he loves me and after all, he still has one boob to admire! bless… It certainly never has made any difference to our sex life, but I know that it can be a problem for some couples and is difficult when you are single. I should add that I adctually re-married when I had the recon and before my 2nd dx, so my new husband was already used to me not being ‘perfect’, so losing the breast altogether was no big deal. But I must also admit that I was very scared the first time I got completely undressed when I first got together with him, but it was a breeze!
At the end of the day, you can only judge for yourself what feels right for you, and I wish you the very best of luck. Do post again if I can be of any more help.
Birgit
Thanks so much everyone. I have been told by the nurse to find a soft bra (no underwiring) so they can get it fitted with a pocket, but I haven’t been told about any other information regarding prosthesis or mastectomy bras or such. Will they give me this after the operation? Do they fit/provide a prosthesis at the hospital as standard do you know? I was just shown a big sponge pad to put over my wound in this soft bra that I’m supposed to buy. Please explain the process someone!!
Also, Burmese, how did your surgeon ‘know’ you had invasive cancer when you had a DCIS diagnosis before your op? I’m terrified of having invasive cancer as I have had my symptoms of bleeding from the nipple for 2 and a half years and was in fact sent away from the same breast clinic and told it was nothing to worry about (hence I left it, until I thought: better ask again) Also, of course I am high-grade and wide spread DCIS. Actually, I feel completely gripped with death fear - I cannot shake it. I know it is early days as my Dx was only last week but I can’t enjoy my young kids or anything as I feel sick with it all. I keep trying to pull myself together but I just can’t.
The bcn will fit you with your prothesis, and if yours is anything like mine she will be a darling, mine was so helpful. I to felt like I had a death fear. Quite honestly until I went to the theatre for the op I still felt like I was in a dream, but when I came round from the op I just had to look and realised it was true they had taken my right breast, from then on I felt like I was more in control and that the nasty bit was gone, I to had high grade widespread dcis. Now am awaiting to start rads, have to have 15 sessions originally the surgeon thought I would need 25, but the oncologist says that 15 will be just as effective. Give your breast care nurse a ring on monday and she will talk you through bras and prothesis and will also help with your diagnosis.
Please keep in touch, we are all here to help you through, I know this site has been a lifeline to me.
Thanks so much Heather. I feel such a wreck and the annoying thing is that I WANT to get a grip but I just can’t. I feel terrible when I’m with my two boys (2 and 5) - just so sad, as if I can’t give them a future. I think maybe it is just the waiting and not knowing what I am going to face after the op. It’s like nothing is going ever to be the same again and I feel as if I will never relax or genuinely laugh (lots of brave faces on however…) again. Is this normal or am I a complete drip?!!
Flaxhigh you are not a complete drip, its just that everyone deals with this little beast differently, your allowed to cry, yell or whatever, fear of the unknown is worse, find someone that you can chat to if you can the phone line here is brill I used it and a very reassuring nurse rang me back, also your bcn nurse should be really helpful. Perhaps you could talk to your gp who will have a copy of your dx and he can help you. Mine gave me a low dose of an anti depressant which has helped enormously. I have five children, and three grandchildren. My youngest child is 12 and I get days when I think I wont see her grow up like I have her brothers and sisters, then I have days where I think sod it I can beat this and will. Its definately a rollercoaster, because everything happens so quickly at the start. I was dx on a friday and saw surgeon onthe following weds, who wanted to operate on the friday of the same week, but I actually had a long chat with him, as I was picked up by routine mammo, and explained to him that My youngest was going to be in Cyprus that week and that I didn’t think it was fair to her to go that distance knowing I was in hospital, and then I explained to him that she was also going to the big school on her return so we arrnaged the op for 4th Oct then they rang and changed it to 28th sept which was a bit scary, that was it d day. I worked till the thursday afternoon before the op. Then we went for a meal on the evening and the following morning I was at the hospital for 7.30am bit of a scary day waiting around and not being able to eat or drink went to theatre at 4 back on ward by 8.30 which was after visiting time, but the ward sister had allowed my family to stay and see me which was brill. Only one drain in which was removed on the monday, went home on the tues, needed waiting on but hey know 8 weeks on feeling much more like a normal? person and just have rads to go. If you check out some of the other threads here, you will find lots of ladies who are 20 years or more down the road after this.
Keep in touch we will try to help you as much as we can.
You are going through so much at the moment, dealing with the pending surgery and the worry about your future and about your sons, you don’t need to make any decisions about recon just now and my advice would be to put it to one side at the moment and deal with the immediate stuff going on, you really don’t know how you are going to feel about it later on. I am 49 and had my mastectomy 3 years ago. I couldn’t have an immediate reconstruction because I needed radiotherapy and was told I could choose to have a recon further down the line if I wanted. At the time its something I though I definitely wanted but when it came to the time I could have it I just couldn’t go through with yet another operation. I don’t like having to wear a prosthesis all the time but you do get used to it. You will be given a “softie” to wear at first which is basically just kapok and very soft and light - I still use mine inside a crop top type bra when I’m at home in the evening and don’t want to wear a bra - its so comfortable and just gives enough shape. There are so many different types of prosthesis available and your breast care nurse will work with you to find one you feel happy with. I tried the stick on one but didn’t like it although a friend of mine wouldn’t be without hers. There are catalogues you can send off for or buy online which have a good range of mastectomy wear - bras, swimming costumes, vest tops with pockets - Amoena or Nicola Jane are good places to start. With a good prosthesis no-one will be able to tell you’ve had surgery.
Good luck with everything
Love and Best wishes
Jackie
I was diagnosed in December 2000, at the age of 46, and after 6 months of chemo had a lumpectomy followed by a mastectomy in July 2001. From the beginning I chose not to have a reconstruction done, I don’t know why, maybe I was fed up with all the hospital visits and didn’t want any more !!
In January 2003 I had my remaining breast reduced to be more comfortable, something I’m glad I had done even though I had more problems with the after care than I’d had with the mastectomy.
A month ago I was fitted with a ‘Contact’ prosthesis, a self stick one, which I am really pleased with. It’s the same size as my other ones but fits with any bra so I don’t need a ‘pocketed’ one to use. My husband says it looks more natural but I have to say that when I look down I don’t think I look any different !!
Good luck with your surgery and don’t be rushed into having any other surgery, until you feel ready, if that’s the choice you make.