Pitfalls of reconstruction?

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Hi all

I had my m-op (still can’t say the word, yuk) 2 and half years ago - now thinking about recon. Only thinking though - not ready yet. Haven’t got as far as discussing it with surgeon, don’t want to get railroaded into his favourite op. if it isn’t for me. I might even decide not to take the risk. I’m scared surgeons so love to do surgery - it’s their career after all - that they just won’t hear me saying I’m not ready I’m only asking.

I mean, what I really want is my breast back. Recon. I’d hope would be second best. But a recon. that leaves me scarred, lopsided, puckered, hard, with one breast that moves and one that doesn’t or that moves strangely, out of sync., and that feels in any way uncomfortable, would be horrific.

What I can’t work out is, would that be more horrific than looking like a strange alien creature as I do now? (Sorry to those of you who are comfortable with your bodies after the m-op!)

Does anyone out there regret their recon., and if so why? I would probably have to have an implant as I am quite skinny: can you have back flap or DIEP flap if you are skinny? and if you do, aren’t you weakened in the area where the flap comes from? and do you have strange nerve sensations? and do these wear off, or do you get used to it? and don’t the scars look terrible? (Sorry to be so frank, I know you get used to scars, but a scar is a scar after all, and I hate mine, I don’t want to offend anyone out there, but scars bother me. I never even had my ears pierced, not because of pain, but because I couldn’t face holes in my body.)

I was never Boticelli’s Venus, but I feel like a Picasso since my op, and what I’m afraid of is a recon. that leaves you still looking like a Picasso really when you’re honest with yourself. But maybe that is the best one can hope for now, maybe that is what we have to be content with, maybe better than that is not an option?

Help me out someone. Thanks.

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I had a back-flap recon Feb 2006 (I’m 55 now). No scaring on or around the breast, except the nipple has gone but the cut was done so well I wouldn’t call it a scar… Where the cut was made on my back you can hardly see it. There is a funny sort of flabby ridge under my arm parallel to my breast - this is where the tubes were put in to drain the fluid the first week. This is a bit flabby but doesn’t bother me except my bra sometimes finds its way there and doesn’t want to move! Breast looks great with no scaring. I haven’t had the nipple tattoo yet but if I had then I don’t think you would know it wasn;t my original breast. It was heavy at first and this bothered me but I did get used to it (I’m a size 34DD) but still uncomfortable in swim suit if no support. It isn’t soft like real breast and at first one is aware of it (the implant) moving around like when you turn over in bed but you sort of get used to that. I think ones brain take a while to adjust! If you have a small breast then I think this is a bonus. A girl I met didn’t have an implant since her breasts were small (how I envied her!) Finding a bra that gave me the right support and comfort was a hurdle but eventually M&S had one. After your op DO all the exercises. I didn’t take enough notice of that and had trouble moving my arm up and had to have physio but that okay now, however my back is still somewhat tight and reaching high is a thing I do not do unconciously, my back also aches after bending over the stove, or anything, for too long. My back is definitely not as strong but is better than it was a year ago. I think if you look around these forums you will find all sorts of differing stories. I think my only regret is back ache if doing a lot of manual stuff (like in the garden). A lot of the time I forget I had a recon and at least mine looks good, not lopsided or anything. I can wear very low cut dresses and nobody would know (I don’t since I live in jeans!). I hope this helps.

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I had an immediate DIEP done last July. I do have a big scar accross my tummy but it has turned to just a thin white line. I would rather not have had to have the op at all but I’m glad I was able to have it done as no op was not a possibility. My tummy is still numb around the area of my tummy button and that does feel strange and of course my breast is sort of numb but I would do it all again if I had to. I saw a lady’s delayed recon recently and it was very good and she feels it has given her confidence.
If you are skinny they can take fat from the bottom and I read recently in the Mail that there is a new op to take it from the inside of your legs.
Hope this helps.
Love
Beverley

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Hi I am recovering from immediate DIEP recon 4 weeks ago, must say I am really pleased with the
outcome. Most people on the medical side say it looks really good. Battling with an infection at the
moment but taking one day at a time.

I have no regrets even with the scar on my tummy

But take your time with your decision

Love and Best wishes
Carol

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I’m one of those strange (and lucky) alien creatures who rather likes my mastectomy…maybe because I like Picasso too.

Seriously…so sorry you are in such agonies of indecision snowhite…I think as well as collecting stories of good and bad reconstructions you’d also maybe find it helpful to try some counselling to talk through the particular issues of reconstruction for YOU. We are all different about our bodies, all have bits of our bodies we are uncomfortable about and ashamed of and I think talking through your feelings about scars, being lopsdied etc etc would help you make the decision which is right for you.

best wishes

Jane

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I can’t have a recon until next year however I have already decided not to bother. I’ve always been very active- go to the gym, cycle, swim, back pack, hilllwalking, ride a motorbike- and I have serious concerns about losing mobility as well as worries about further surgery, scarring, etc. There’s an article in the recent BCC newsletter about a very sporty woman who is having difficulties getting back to full fitness/mobility nearly 2 years after her recon. My BC nurse has told me I would be left with “limitations” after recon. she also put me in touch with a former windsurfer who can no longer participate or compete in her chosen sport following recon due to losing the muscle in her back. I would not have chosen to look the way I do now, however, I feel I’ve lost more than enough to this disease without losing more for what is effectively a cosmetic result. My nurse also told me a recon’ed breast will never feel the same. I’ve also been told I’d need an implant too which immediately commits me to future surgery. I’ve always thought that implants were revolting- no way do I want a lump of “plastic” inside my body. So all things considered, I’m leaving well alone. I don’t want the surgery, scarring, messing about, hassle to get back to full fitness, all for something that is not going to look or feel like the breast I lost. It’s a very personal decision to make and mine suits me. I’m happy to leave things as they are and be certain that I can continue to do the things I’ve alwasy done rather than run the risk of problems and limitations.

Geraldine

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I have just to add to my comments on my reconstruction that in no way has my recon (DIEP) effected my mobility or given me limitations neither have the other DIEP ladies I have met. I went to yoga six weeks after the op and was back at the gym within 3 months. I know that the recon using back muscle can limit things but it is not the only recon available a DIEP uses no muscle so there are less problems after.
Beverley

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Hello all
So grateful for mixed replies - and grateful for the honesty, on both sides. I don’t know if the DIEP which does not use muscle is an option for me - I am particularly grateful for the caution re. the back muscle one, as I had not heard about any mobility issues, but had heard about the sensation thing where you feel as though you are being tapped on the back or something because of the nerves.

It is a bit of a minefield. I too dislike the idea of plastic and particularly silicone inside my body, because although they say there is no proof of harm when it leaks, getting proof of vague effects, if there are any, is very difficult - they could be harmful but it could be a long time before there is proof. They might be, they might not be but do I want to take the risk? Geraldine you sound very strong, I feel much like you about the risks. But I so want my body back. But as you say - that we cannot have, and the recon. will be very different.

Jane, maybe I should learn to love Picasso, as you do. Don’t know if I can. Frankly I have been sexually disabled by my deformity and it’s nothing whatsoever to do with my confidence in my appearance or my acceptability to my husband or men in general. He has been absolutely fine and says all the right things. In clothes I look fine (to the discerning few, I’m not bragging, but I’m confident with my appearance, never was one to worry about my imperfections). It isn’t just about what I look like, though that’s part of it. That part of my body was extremely important in that way, and one on its own just doesn’t work for me - for me, not for my husband. But I suppose a false numb scarred mound on my chest is not going to replace it. I just thought it might help.

I will continue to ponder, and Jane you are right, and my BC nurse has arranged for me to see a disfigurement counsellor, though I think the disfigurement is only part of it for me. Am I the only woman who feels sexually incapacitated by this? Will it eventually settle down and sort itself out? I can’t at the moment see myself ever accepting this loss.

Anyway girls, I am really grateful for your very honest comments.
snowwhite

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Hi Snowhite,

Just wanted to add my comments. I am now 7 weeks post bilateral recon using the back muscle and skin and am really happy with the results. When I knew I was going to have to have a bilateral mastectomy I was absolutely horrified and knowing I could eventually have recon was the light at the end of my tunnel. The pain just after the op was not too bad it was more uncomfortable that painful, after the initial 24 hours I managed on ibroprufen and paracetomal. Movement in the arms are obviously limited for a while but I am finding it getting better all the time, in fact I’m considering going back to keep fit in the next couple of weeks, still quite tired by the afternoons (in theatre for approx 7 hours so alot of anethestetic). The only funny sensation I have is when I’m rubbing bio oil into the scars on my new breasts it feels as if someone is prodding me in the back but my thoughts are it’s a small price to pay.

I can’t express enough how much having the recon has done for my self confidence, I am 42 and couldn’t imagine the rest of my life boobless.

good luck in whatever you decide

take care
Kaz
xx

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Hi Snowwhite

Do you use the Private Messaging at all?

Reg

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Hi,
I had a masectomy in Feb 06 and my surgeon is very keen for me to have reconstruction as I am so negative about myslef, but like you I do not want to loose the muscle from my back as I am a very fit, active person, and ride, garden etc. Is it worth going through all that time in hospital, another op, and recovery etc just for a cosmetic result, which could go wrong? I think about it all the time and would love my old boob back, but a recon won’t feel the same will it? Will be interested in what you decide.

Sheri

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Hi
I had a mas. 4 weeks ago today with reconstruction and I am numb but the result is very convincing. My cleavage looks exactly like before and healing really well(Thank goodness). Yes, the boob doesn’t feel like the other - it is harder but from a confidence point of view I am glad that I took the plunge. It is such a personal decision think carefully. To give an idea I am going to a function this weekend and am wearing a dress i had bought for it prior to my diagnosis. It is low cut and whilst I’m having some difficulty getting a bra that is not wired and will sit ok the dress still looks superb.
I am 37 and feel that it may have been a factor - but i have a friend who didn’t go for recon and feels that was also the right choice. I thinks had i had to go back for second surgery to get it done i might not have been so brave but as it was i woke up from having my breast off to find one still there (albeit with a bunch of staples in my tummy from the removal of the muscle) - very personal choice - good luck!!

MuddyXX

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Hi
Hope you see this message. Just thinking about all the pros and cons and what sheri said set me thinking. A person who looks okay and does something to improve their appearance (make-up, clothes, even surgery) - that’s just cosmetic; but when you are deformed and you do something to appear more normal, that’s not cosmetic. Especially when it is not just about appearance because I can’t function properly either. I’m sorry to those who feel okay about their bodies after the m-op, I don’t want to offend anybody, but from where I am, I’m deformed since the op. and I hate it, and if I could wave a magic wand and have my breast back I would, and recon. is never going to be perfect but it might help. Only thing is, there is a very high price to pay for it. Even if I look better there will be no feeling and I will know it’s false and that’s why, as sheri says, I am wondering if it is worth it. But without it, well, we all have had to make the decision, is life without a breast worth it? And I know I’m breaking all the rules saying this, but I’m not sure it is. I thought of my kids, and I went ahead with it, but this too is a very high price to pay.
Maybe you eventually accept the recon. as part of your body, do you? I think it would have been easier to have had it done immediately. Oh well.
snowwhite

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Hi Snow White

I had a m in 2005 and went straight on the waiting list for a reconstruction. In Feb this year after much discussion withthe consultant I went ahead withthe recon using the latimus dorsi muscle andskin from my back. I had an expander placed in and when I wokeup was elated, I had a mound back.
Spoke too soon, as in June had to go back as Ihad beenback and forwards telling them something was not quite right, and they had to take it out as it was infected. I am not telling you this as a horror story,but to let you know I am now waiting to go back infor another go. Yes, my back feels taut and uncomfortable but to see that mound there and look fairly good in a low cut top/dress is worth it to me.
Sue

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Hi Snowwhite,
There are pros and cons to immediate recon. I had mast and immediate Diep recon for DCIS in Sept 05. Yes, it was great waking up with a ‘breast’ intact, BUT I had big problems later on (Dec/Jan) coping with the BC diagnosis. Everything just happened so fast, that the terror of the diagnosis finally hit me rather late!
At least with delayed recon, you have had time to ‘cope’ with the diagnosis, and really appreciate your new breast. On the other hand, I’m glad I never had to wake after a mastectomy, to find I was lop-sided.
I had a few post-op infection problems, but as a fitness instructor, a DIEP was best for me, as there is no muscle involvement, and my breast is totally natural looking, even in lycra. And I wear everything I did pre-op. (Actually I show more cleavage than before…after what I’ve been through, I feel I have the right!!!)
For me, there was no option, I could not have faced life without a recon. It is not just vanity, it is who I am, and really mattered to me. It still feels a bit ‘odd’, but its just part of how I feel now, post BC.
Don’t know if this helps…just a few observations!
Good luck with whatever you decide.

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Another thought…breast reconstruction is NOT cosmetic surgery, even though it might be performed by a plastic/cosmetic surgeon. Reconstruction is surgery to correct the result of surgery for a disease process (cancer). I feel it’s an important distinction to make,
By the way, I am pretty slim, but there was just enough tum for a 34D breast! I went down to 9 stone size 10 pre-op (stressed-out weight loss. Was warned not to lose any more!)
xx Helen (Dancing girl)

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No one is saying that it is cosmetic surgery, just that the end result is “cosmetic”. i.e it looks like a breast but does not and will not feel like a breast, and is n’t made of breast tissue. No-one is trivialising the procedure.

Just another thought, I don’t regard myself as deformed. I do regard myself as a survivor and a strong person. I saw a guy today who was minus an arm. Would anyone describe him as deformed? I would n’t. In fact I think most people would find it offensive to regard someone who’d lost a limb, etc or sustained a disabling injury, as deformed. I know that body image is a very personal thing and I’m not putting down anyone who does n’t feel positive about themselves. The way I look at it is that removing my breast took away the cancer. It could have been worse- I could have died and I did n’t.

Geraldine

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Hi all
Fascinating. “Deformed” - either means, quite simply, departing from the “normal” form - in which case, the one-armed guy, and a lot of other people, and me, are deformed - that would be a matter of objective fact. Or, used as a form of insult, obviously and most certainly not. I was most emphatically not using the word in that sense. But I am struggling with the change of identity that this has caused, and I am trying to find where I belong in the human race now, because to me it feels I have been picked up from where I was and set down somewhere completely different and strange, not my choice, and I am trying to get my bearings. And my way of dealing with things is, I have to call it by its name. If I’ve got the name wrong that is fair enough. Maybe “mutilated” is better as Reg suggests. For sure something’s happened because it isn’t like it was and there has to be some word for it.

Just saw the athletic guy with the bionic legs running 400 metres I think - awesome, absolutely awesome. His body has been mutilated, as Reg suggests this might be a better word, and he can’t hide it as we can (though I have a problem with that as well, I know I think too much, that’s one thing that hasn’t changed!) but he went ahead and did that, just awesome. I know I have a lot to learn. I mention it because I feel now I belong with people like that, and I did not think like that before. Before I was able-bodied, now I am mutilated and disabled, and I have crossed a line. I’m just trying to work it all out, and it isn’t easy and it is very very painful. Yes I lost the cancer, but I gained a whole load of other issues, really painful issues, and I can never be certain I’ve lost the cancer either. It’s not like getting over flu, or even appendicitis which could kill you, but if you’re cured you’re cured. I don’t feel cured. Or, if you want to call it a cure, it is one with a very high price tag. Never the same again.

Reg, thank you so much for your thoughts - I think you are right, recon could not make it worse could it. I actually use 3 words: disfigured for the operation site, which is scarred; deformed for the body as a whole because it is not as it should be; and disabled because I can’t function properly - considering recon because it can help the last 2, though there will always be scars. It won’t be perfect but it surely will make me feel better than I do now.

Interesting about immediate recon. You are probably right, Helen, you just don’t get over this whether it’s immediate or delayed, and your comments are helping me a lot and I hope other people as well. What is the scar from a DIEP like - trigg earlier said it is on her stomach but is it horizontal or vertical, and how long is it? I actually don’t think I’ve got enough fat anyway, but need to know all the facts. How much fat do they need, I am a 34B/32C? If you haven’t got enough fat presumably an implant would be okay for this size. Or do they have to use the back muscle?

Love and hugs to everyone, we all have our different issues and different ways of dealing with it, and I can’t tell you how much it has helped me having you all to talk to.

snowwhite

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Snowwhite,
An interesting discussion! I never would think of myself as ‘disabled’, because without a breast, I would still have the same ‘abilities’, where a one legged person wouldn’t. But disfigured, mutilated…yes. (My issues here, I know)
Re the scars for a DIEP…a horizontal ab scar, across the bikini line, from hip to hip. Now going white, not visable in a bikini, or underwear. AND a flat tummy (and after watching a tummy tuck op last week, no small thing!! In fact quite a bonus). For a delayed recon, you will also have breast scarring, but I understand that is not too bad, and worth it.
If you are referred to a plastic surgeon (only they can do a DIEP, as it involves micro-surgery) they will assess you. You need to be a non-smoker, with no previous ab surgery, fit enough for a long, 8 hour surgery, and up for a pretty tough op. In my case, it was tough but utterly worth it. I won’t need further ops, now I have had a small ‘tidy-up’ op, and an optional nipple reconstruction, and later tattoos.
I also remember reading about a group of women (maybe American Indians) who considered themselves ‘Women of the Scar Clan’, and wore that title with great pride and dignity. It was a badge of honour, and proof that they had really experienced Life. Somehow that picture sustained me when I was feeling ugly, different and vulnerable.
x Helen

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I feel so uncomfortable about words such as deformed or mutlilated or disfigured to describe my post mastectomy body. These words imply to me some kind of deliberate intent on the part of another to harm me and there has been none; or else a terrible accident and there has been none.

I don’t see my mastectomy like that. I think the gentle surgeon who removed my breast…cutting into my chest wall to try to get clear margins…was doing all he could to save my life. In many ways surgery is the most important and effective part of breast cancer treatment. And I am left with a flat, almost concave shaped chest and a fading scar…as I’ve said before an interesting shape but not one I’m in any way ashamed of, nor one which interferes in any way with my daily life as some kinds of cancer surgery would. And yes I do see my scars as kind of symbols of my suffering which I carry with some pride.

I choose to pass as two breasted most of the time…wearing a prsothesis cause I want the shape and look of ‘natural’ breasts. Maybe I am not entirely comfortable or it would be easier to go one breasted and not care…and I do care. I too feel different and vulnerable but I don’t feel ugly.

These days, with a recurrence which at best will be managed and in time will kill me, I weep often for the havoc that breast cancer has brought to my life and I long for the days before cancer, but I never long for two breasts. One breast and life is all I want.

Jane