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To reconstruct or not ?

148 REPLIES 148
delly
Member

Re: To reconstruct or not ?

Caroluna - WOW and Whoopee. That's brill and fantastic that you're comfey and doing well x

Wavey - Thanks for the differentiation in the two tum techniques x

Love to everyone

Delly xxx

waveylocks
Member

Re: To reconstruct or not ?

Carolina that sounds really good. Glad your home & feeling better then you expected. Yay!!! Big hugs xx

waveylocks
Member

Re: To reconstruct or not ?

Hi Everyone

 

In answer to your questions Delly:-

DIEP & Trans-flap are both reconstruction techniques using the tummy. The transflap uses a bit of tummy muscle, the DIEP does not!! So they take the skin, fatty layer and use it to form a breast shape & with some clever micro surgery stitch it in place -6-8hr op. My surgeon also offering at the same time a breast uplift of the remaining real breast -I wince st the thought of how rough am going to feel after that little lot is done!! Ouch!!! 

 

My gall bladder surgery is keyhole so not too bad am told -will be in the Autumn. Couple of weeks recovery. Symptoms were pain in the right side usually over the liver area just below the ribs on right side. Sometimes wakes me in night with a stabbing feeling. Sometimes feel nauseas.

 

hope that helps. 😀😀

 

thats unteresting....thanks.

hugs &love,

Ange

xxxxxxxxx

 

 

 

Caroluna
Member

Re: To reconstruct or not ?

Hi folks

I'm home after MX and DIEP last Wednesday. Phew phew phew. All seems to have gone ok, veeeeeery little pain. My biggest prob was massive hot flushes while I had the warm blanket post op and did get a bit freaked out after anaesthetic, but both shortlived. So just one drain, and early night now. Am much more mobile than I expected. Our wonderful NHS. Night night, Caroluna

delly
Member

Re: To reconstruct or not ?

Hello to everyone - hope you are all doing well and coping with decisions.

Wavey - you're so sweet. Community champion means I've made a huge nuisance of myself on thiis here wonderful forum !!!

No, I assure you, their reason for wanting you to lose weight is as I mentioned in my post. They want you to be at a preferred weight to yourself to prevent lobsidedness. You didn't answer my ? Diep - is that tummy? Trans is what???

When's your Gall bladder op gonna be???. GALL - "it got my gall", "you've got to have a lot of "gall" to do . . . It's important, tho' we can live without one. Hoping all goes well with it for you, keyhole or not, it's still a major trauma to your bod. What have been your symptoms for it Wavey?? cos I've been having stomach probs for some time now, and I avoid anything fatty or oily.

Loadsa love Dellypoos xxx 

waveylocks
Member

Re: To reconstruct or not ?

Hi everyone,

 

oooh Delly -what is this community champion thing I've seen recently. What does it mean? 

Gotta loose the weight or no op -that the main motivator.....figuring am getting older so if the weight don't go off soon they will then be saying am too old for such drastic surgery!! So figured better get on with it!! 

Nottingham is where am going girl....can't mention names so you'll have to pm me if you need more info...

great to see you back on form!! Need a good laugh!! Yay!!! 

 

As for being easily knocked back -figure after all you've been through girl your entitled!! 

 

Am getting a pre-run as gotta have my gall bladder out before the big recon. Bit of key hole surgery so frankly a bit of a doddle I reckon in comparison to the big guns of Bc treatment. See before all this lovely treatment I probably would've been a bit worried about getting the gallbladder nuked but now am horizontal with laid backness over it. Take me a couple of weeks to recover... 

So there are some advantages..... Xxxx 

delly
Member

Re: To reconstruct or not ?

'Ello everybody, hope you're all doing well.

'Ello Wavey - please remind me again where you're to have your surgery?? And please remind me again what the diff between Diep (is that tummy?) and a Trans is?? Think I already said, my options were only Lat Flap or implants. Coo, I like the fact you're so in advance of it all and giving yourself plenty of time to work up to or, should I say "weight off" to -  I'm LOVING your commitment. Am presuming you've been advised to lose some weight, with it being one boob, as any fluctuation would make it lobsided? You keep at it and go for it gal. What you using as inspiration or a carrot?? A blown up poster of Elle "The body" McPherson or Claudia Schiffer??

I haven't yet anything arranged anything for expander to silicon op yet. These expanders are supposed to have a limited lifespan of two years, which urged me on back in December. But had a three month delay due to hospital mismanagement (was lost on the system!!). Then that mishap of communication with last consultant,  then me taking a mental dive with "it" and other stuff!! Afraid it doesn't take much to knock me back down these days.

Loadsa love

Dellywelly xxx 

waveylocks
Member

Re: To reconstruct or not ?

Hi Delly,

plastic surgeon -supposed to be extremely good. My GP waxed lyrical about him. A friend of mine who has had a really bad run has now switched to Nottingham -she's sure some of the problems she is experiencing is down to poor plastic surgery and understandably feels very angry. Not doing  mine till next Spring -got nearly a stone to loose in weight or won't operate....not finding the weight loss easy -don't think the Letrozole helps matters so on a strict low carb diet and it's very very slowly coming off. Need to get fitter -feel like I'm training for a Marathon-haha!!! 

 

When end are you having your surgery? Xxx 

delly
Member

Re: To reconstruct or not ?

Pod1 - Good for you. Isn't it a relief when you finally come to and make a decision. One less thing to think about whilst you're having to deal with many others.

 

Wavey - coo-eee flip. No wonder you're gonna be in a week then. That's great that your having a lift to your natural boob at the same time. Yes I know it's more surgery and discomfort too, but hopefully it'll save you time later. Is your surgery being performed by an oncoplastic or a plastic surgeon ?? Talking of getting in and out of bed. I should have only been in hosp 2 days for my expander installation. But, because the trainee carrying out the op caused massive bruising to the whole of my middle area, I was in for five. If I struggled to get in and out of bed in hospital, I wasn't going to manage at home on my own was I? So I stood my ground when they tried to chuck me out on day three until I was more mobile and able. Good luck brave lady - I may just be in your pocket on the day. Don't forget to wear your bestest, sexiest knickers for the op table if you're not required to go commando!!!! Yeh, I'm naughty - well it gives 'em something interesting to look at and talk about !!

 

Loadsa love Delly xxx 

waveylocks
Member

Re: To reconstruct or not ?

A www thanks lovely Delly -surgeon told me a week in hospital for a DIEP or Trans flap. These are my only two options I'm afriad..... Both big ops -5-6hrs. He also offered to lift the real boob up -all at the same time which am guessing will add to the time under the knife. . Bit fazed by that as would mean the whole of the front of my body will've been under the knife! Ouch! Really don't know how I will get in and out of bed!! Haha! Am not the bravest of people..... Xxxx 

 

And thanks Pod1 -what lovely lovely people there are on here! 😊😊😊😊 

 

 

Pod-1
Member

Re: To reconstruct or not ?

Hi Waveylocks - don't worry at all. We're all here to support each other and as I said - the more information we have - the better.

 

I have found this forum such a brilliant resource and many of you ladies provided  (and still do provide) such great support and help. I really bellyached for such a long time about what to do (re : reconstruction) And many of you kind ladies let me into some of your personal journeys and experiences, which was both humbling and helpful. 

So thank you to everyone.

 

As I said - never say never - but for now, until they come up with a new way of doing reconstruction  (if that's possible) - I'm keeping my body parts as they are & living with one boob, which I'm 99% ok with! 

 

Good luck to those still on a journey.  We're all here to help.

 

Pod 

delly
Member

Re: To reconstruct or not ?

Hello Wavey - awww, dear friend.

Blimey - in hosp for a week!!! What exactly are you having done?? I'm catching up on here from the 12th, so perhaps you've mentioned it. Thanks for the recommend for Notts, but the op to replace expanders with permanent silicons is only a day op, and Notts is too far for me. I'm likely to return back to the surgeon at W/shawe hosp, but only on the condition that he himself performs all the further surgery. All the best for the 22nd lovey xx

 

My dear Naz - I'm really sorry to hear that you haven't been happy with your recon. All the surgeons that I've had recon discussions with (three over a seven year period!! until I was finally in a life position to "go for it"), all emphasised that it's more about looking good in a bra and not to expect too much naked as you/they're obviously never going to be able to achieve perfection xx

But still to me, even at expander stage, I can cope so much better with looking at myself in a mirror now, without feeling upset - already preferring what I see to a skinny, flat, ribby chest. Plus gaining back the lateral or side curves to your boobs that you lose with a mastectomy - hence the "Skinny" reference, as in the sideways width to the upper chest and ribs.  As I said in my previous post, it's done wonders for my confidence being a single person who's still with hopes to meet a suitable partner. My attitude was - "If I'M not happy with and looking at my own body, I'm sure as heck not gonna want someone else looking at it in the bedroom department.

 

Another "plus" is that, I don't need to wear a bra, and at the age of 57, as long as I'm dilligent about looking after the skin, with it being so thin, I'm more likely to retain two pert boobs longer !! Woohoo. Don't think I'll ever be able to sunbathe for prolonged periods. But then, hot flushes make hot weather less bearable anyway. Nice sitting in the shade tho', and again, less ageing !!.

I'm not sure how I'd go on with bra fitting yet, as when you have implant recon, they have to leave a large enough seperation gap between the boobs to avoid the skin on the sternum / breastbone being lifted by the pressure of the expanders or implants. I'll have to play that one as and when, as most bras don't have a large enough gap between cups!!

 

Jellyjem - I so get what and how upset you feel. Bummer innit, to say the least. And you ramble on all you want to gal. You've loads of empathetic ears on here.** Have you been shown a portfolio of photographs of results from the various different recon procedures by your elected surgeon ?? If not, ask to. That will also help you decide whether to carry on forwards and which procedure to go for. There are the extra scars to consider with self tissue recon, as mentioned, not just to the area the tissue is taken from, but also to the breast area itself.** xx

 

Also, as I've said before, your marital/partner/single status comes into it. I've spoken to many women older and younger, in longterm stable marriages or relationships, who didn't feel the same need confidence wise for recon and chose not to have it done. Obviously helps if you have a supportive other half, for whom it doesn't matter so much. But I've also known and spoken to other such women, who opted to have recon.

Loadsa love

Delly xxxx

 

Ps. - Naz, have sent you an email xx 

  

waveylocks
Member

Re: To reconstruct or not ?

Thanks Pod. I always worry about saying something as don't want to cause any upset -we have all been through enough. So I appreciate your graciousness. I did wonder if you meant tissue rather then muscle...

And I know what you mean re age -I feel if I am going to do it I need to do it in the near future as am getting older.... I quite understand how anyone would feel it's too traumatic to go through such a big op -part of me still feels this...and am I brave enough!!? 

 

The best advice I was given is to take your time to think it over and talk to others. I have the privilege of doing this and am grateful. I don't believe there is a straight linear process or answer but in the end you can only do what is right for you...you are the one who will be living with the result. And a decision not to can be changed in the future if you ever want to -there is no time limit in reconstruction so long as you are able to tolerate the surgery. 

Pod-1
Member

Re: To reconstruct or not ?

Hi Waveylocks 

 

No problem at all. The more information we're armed with - the better. I'm sorry if I appeared misinformed. I think I meant to use the word 'tissue' rather than 'muscle'. 

 

Either way - as you say, it is quite an invasive procedure whatever (non implant) route you go down. I think what scared me the most or should I say, put me off the most was the fact that you have to sacrifice another part of your body in order to form a breast. It just wasn't for me.

 

However - I know a lot of ladies have been very pleased with the results, using their own tissue, as tissue gives a more natural droop!  Where as implants have a more 'pert' effect! (Or so I was told! )

 

As a small breasted lady - I guess not having another boob didn't have that much an impact  (visually). So I can live with what I've got. Mentally - I would of course like another boob back. But as has been mentioned on many occasions - reconstruction will never give you back what you had before.  However, I totally understand that for larger breasted ladies, not having another boob has greater impact,visually and physically.

 

Its a really tough decision for anyone to make. And as I said - never say never. But for now I would agree with Feistyflora. I'm good as I am now and am leading a normal life. Just don't want the hassle of going thru all the surgery etc 

 

But thank you again for the information. It was helpful & I will take it on board, should I ever change  my mind about reconstruction.

 

Pod 

 

 

feistyflora
Member

Re: To reconstruct or not ?

I was offered breast reconstruction by my surgeon but I turned it down. Now, two years on, I have no regrets about my decision because I was more worried about the health aspect than the appearance of my breasts. Age is certainly an issue because if I had been younger I might have felt very differently.

waveylocks
Member

Re: To reconstruct or not ?

Hey Pod,

It is a difficult decision and a personal one too  I agree.  

 

Hope you don't mind me picking you up on one point re the DIEP op. You said it uses all the abdomens muscle- It does not use any muscle at all -that is its appeal.  The trans flap however does use muscle  from the abdomen but only 50p size.  A plastic surgeon told me this and it is in the literature too.  The DIEP am told doesn't have as high a success rate as the Transflap -however the surgeon I've chosen is highly skilled and his DIEPs do. However he says though the DIEP is meant to have a faster recovery time then the Transflap in his experience he hasn't seen this. Recovery is quicker with those who are fitter -that was his comment. So worth toning up girls if you are on delayed recon like me!! 

 

If if you go down either of these op routes be prepared for a long recovery time. Am dreading it. I live on my own but am going to have to draft some willing volunteers in as there is a little support that I know of out there on the NHS. 

 

I agree this op is very invasive and like all ops has its risks. I don't like my one large breast only -I could have that reduced as an option with out the big op if I want which gives another option. Whatever I do it leaves scars. Currently I have a massive one running from mid chest all the way under into my arm pit -am not so fond of that as a look either though I appreciate the life saving measure it afforded. 

 

As far asI can see all of these reconstruction ops have their disadvantages -none are perfect. So it comes down to what you can live with and accept. One things for sure though no artificial boob can replace the real one. Maybe the next generation won't have to consider all of this as they will have developed living tissue by then but I will be too old for such an option! 

Caroluna
Member

Re: To reconstruct or not ?

Hi all

I'm listed for MX 22 June, and my decisions have gone the opposite way to Pod1. I was adamant that I only wanted the minimum of surgery, and faffing about with a recon was vain, shallow and the NHS had far better things to spend its money on, buuuuuutttt, my breast surgeon nudged me at least to speak to the plastics chaps. I was convinced ( no hard sell) that I most likely would do better with an immediate DIEP, so after a great deal of thought and discussion, that's the way I'm going.

So, all our different decisions must show how varied we are and how it really is an individual decision for each of us.

I'm prepared to end up regretting this choice, or at the least wondering if it really was the best thing to have done, but on balance, it seems right form me ( I think!)

Every best wish to everyone struggling with this stuff, ever onwards, ladies...

xx

jellyjem
Member

Re: To reconstruct or not ?

Sorry about the multiple posts, don't know what happened there 

jellyjem
Member

Re: To reconstruct or not ?

Naz, thank you xxx I know I have a lot of thinking to do.   It's all still really early days for me, I'm still having treatment for the cancer never mind the recon. 

 

All any of us can do is try to gather as much info as we can I suppose and maybe if we decide to go ahead not expect too much from the reconstruction.

Pod-1
Member

Re: To reconstruct or not ?

Hi Jellyjem

 

The reconstruction thing is such a personal decision and I know many laides out there (myself included) have bellyached about what do to. There is no right or wrong answer, and there are so many things to consider, which just simply messes with your head !

 

I did a complete u-turn on the reconstruction issue. Prior to my mastectomy, I was adamant that I wanted a breast back (in whatever form that may take). But that was before I knew what was involved and what the drawbacks were.

 

My preferred option would have been to have an implant - whcih was the quickest and simplest route. But as I'd had radiotherapy, I was unable to go down that avenue. So the only options left for me were to use tissue from other parts of my body, which is where the quagmire of deciding what to do, started. The two options I had ever so remotely considered were the LD flap or the DIEP one. Neither particularly appealed to me - but I needed more advice on it.

 

I spent weeks and weeks speaking to many ladies - both on this forum and through the 'someone like me' service, as I wanted to know what was invovled and how surgery affected them, and what the results were like etc I had a very mixed response.

 

But for me - what made my decision in the end (although never say never) was the fact that the surgery was epic - a good 8-12 hours and the recovery was between 3-6 months depending on whcih option you went for. Both the LD flap and DIEP had drawbacks, but equally, many women commented on how good the results were (in the main!).

 

The DIEP one, quite frankly horrified me, owing to the hip to hip sized scar it left and the fact that some ladies commented on how they were bent double for many weeks afterwards because all their muscle had gone from down there. It just wasn't an option for me. Besides, I am quite slight and don't have much belly fat in that area !

 

And as for the LD flap - some ladies had complained of losing movement in their arms. I am quite a sporty person and didn't want to risk that happening to me. Also - some ladies commented on how they could feel the muscle twitiching - which just freaks me out !!

 

I had got my health back, and that was the main thing. I an also quite small chested, so the prosthesis seems to do the trick for me. I can lead a normal life now and I've moved on - gone back to work, back doing sports, etc etc. I didn't want another 6-12 months off, going through all the pain all over again, the hassle of constantly going to medical appts, the worry of if there were infections going on etc etc the list goes on.

 

Naz has summed it up quite well too - and seems to agree with me in so far as its such a personal choice, and everyone's sitIuation is different. It is such a difficult choice to make, and what ever you decide, I wish you all the best of luck. And remember - we're all here for you.

 

Best of luck

Pod

jellyjem
Member

Re: To reconstruct or not ?

Naz, thank you xxx I know I have a lot of thinking to do.   It's all still really early days for me, I'm still having treatment for the cancer never mind the recon. 

waveylocks
Member

Re: To reconstruct or not ?

Jellyjem so sorry to hear of all you have been through. There are peole out there who had great reconstructions and are very happy with them. I spoke to someone from the Someone Like Me and also a friend of mine had a resoncstruction (not implant) she was very happy -unfortunately her BC came back but she is now having reconstruction on the other breast! Everyone is different. I feel like you and would like more balance even though I know it won't feel the same.  Just pick your surgeon wisely and take your time.

 

I felt awful after my mastectomy. The whole process is draining and harsh. Make sure you do your exercises and I hope you have some one around you to pamper you. A mastectomy is a big op and you need time to recover.  Big big hugs xxx 

NAZ
Member

Re: To reconstruct or not ?

Hi jellyjem

i think the reconstruction journey is such a personal one and the outcomes are different for us all when the end finally arrives. The trouble is, there are a few different reconstruction options available and if we choose to have a reconstruction, decisions need to be made, based on information given to us by the professionals. For me personally, I was really looking forward to getting some shape back after my left MX. However, a less than competent surgeon got his hands on me and made a huge mess. It had to be rectified by a real plastic surgeon. End result is okay, but I'm hugely scarred.  This led to real anger! I also wasn't aware of how I'd feel about the numb shape, something which I've never really gotten used to all these years later. 

 

On on a brighter note, I wear what I want, don't suffer any pain or stiffness and have a full range of movement. In a bra I look good. Naked is another matter.. 

 

i think some posters on this thread have been left with lots of discomfort and that is frustrating and debilitating. There is also the debate about women being able to live full and happy lives minus a breast reconstruction. There seems to be alot of assumption that women WILL want a recon because of societies emphasis on boobs! 

 

There is no easy way round life after a MX. Either you live without a breast shape, or you take the plunge and opt for a recon. This is a gamble, as outcomes can range from excellent to poor. 

 

 

Very best of luck jellyjem.. It's a pig of a journey xxxxxxxxxx

jellyjem
Member

Re: To reconstruct or not ?

Blimey...... I've hust read the whole post and it's shocked me and opened my eyes.   

 

I was diagnosed with a large breast cancer tumour Halloween 2015.  I had chemo followed by a left sized masectomy without reconstruction in April and I'm nearly (hopefuly) finished with radiotherapy, just another 9 sessions to go.  

 

Im 44 and a double H on my poor remaining boob.  I always thought my boobs were my best feature until the bloody cancer struck and I've been focusing on next year and having the reconstruction to get myself through all this.    Although my surgery is heeling well I feel horrible and cry most days about how lopsided I look.  I'm under no illusions that a reconstruction will look like my boob used to look but at least I thought I'd give me my shape back.  I can't imagine living the rest of my life like this, I hate the fake boob, I just want to be able to wear a normal bra again.

 

I don't know what I'm asking here and I know I'm rambling, I'm just really shocked and saddened that so many of you hate the reconstruction so much.  

waveylocks
Member

Re: To reconstruct or not ?

Hey Delly,

lovely to hear from your friend! Well am prepping for the big knife so to speak for next Spring so am not rushing in either. Don't know anyone within your 20 mile radius but am heading to the Nottingham Breast Institute -they have three top notch reconstruction surgeons there and are well renowned. Don't think I'm allowed to post names so pm me. I will end up being further from home then I'd want but it's not for long.  I know it's further Delly but your in hospital for a week and then home -and with it being such big surgery I'd want the best!! 😊😊😊 Big hugs brave girl!! Xxx 

Caroluna
Member

Re: To reconstruct or not ?

Hi Delly, I'll PM you, Caroline
Kess
Member

Re: To reconstruct or not ?

Whether to have recon or not is such a personal decision. I finished treatment 18 months ago and have decided against it for now at least and probably always (delayed was my only option). This meant a bit of a battle with my surgeon who wanted me to start thinking about it, but I have done an assessment of the pros and cons, and for me its just not the right decision. I am well, working, exercising and ok with my body. Would I prefer two natural breasts? Of course. But I don't want to go through a massive op (can't have implants) to give me a shape I can get from my prosthesis. But as I said as the start this is a personal choice, and women should be supported in making it,and allowed to make it when they are ready not rushed into it. I would recommend anyone who is unsure contacting Breast Cancer Care and the Someone Like Me team. You can ask to speak to someone who has had recon and someone that hasn't, and their experiences might help you decide what's right for you.
delly
Member

Re: To reconstruct or not ?

Hello lovely ladies, and some old friends - Naz and Wavey.

I'd only ever wanted implant surgery, despite having self tissue options offered or pushed by two different surgeons. Didn't have any stomach or bum anyway should I have opted. Plus, being slim, and a keen walker/swimmer at the time, I didn't want to have one of my strongest body muscles the L.D, being compromised either. Neither did I want the extra scarring, risks of infection or tissue graft failure and increased healing times.

I had to have two mastectomies 9 months apart with ANC 2006 and 2007. Coped well mentally, still having one of my own boobs, tho' difficult in the confidence and potential relationship sense - being single at 46. Had wanted immediate recon but due to various reasons, couldn't have. Same happened with the 2nd one and didn't cope well mentally at all. 

Did without for 7 yrs - hating it. It actually stopped me from the dating, so "singledom" plays another part in a persons decision.

 

Finally put myself onto the recon horse, for double implant surgery, back in March 2014. Went through all the expansions, ready for silicon replacement, September 2014. But due to a xclled surgery, followed by other personal life complications, am still with expanders. BUT, the boost to my body confidence, even thus far, has been dramatic. Feel more womanly again and certainly more "whole". Just need to get it all finished yet. Different again tho' - somewhat easier to match up, having both to recon at the same time.

 

So Jag - with regards to healing and discomfort following, and your holiday 5 weeks later - You should be okay. You'll be given an immediate amount of fluid into the expander at the time of the op, which will feel very tight initially, until the skin has had time to stretch to it. So a bit uncomfortable for about 3 weeks. The incision scar is only about 2 inches, at the side, from under your arm. As long as there are no scar healing probs (I had none with both sides), you should be ok. If you're walking, I'd avoid carrying a rucksack, unless it's very light - get someone else to carry your gear !! You'll have to play that one by how it feels. Hope that's been of some help.

 

Do any of you who've had previous implant recon, have any plastic or oncho-plastic surgeon - recommends for the Manchester area. I'm in Macclesfield, but am prepared to travel up 20 miles or so. Could you please PM them to me. Thanks in advance.

 

Good luck to everyone with your very difficult decisions.

Loadsa love

Delly xxxx

 

 

Soosie_Soo
Member

Re: To reconstruct or not ?

Very interesting reading. Bella60, Naz, Pod1, I really like the idea of a phychological assessment prior to a decision for immediate reconstruction! Just a little update from me: I have changed hospitals and consultants and I went for my check-up on Monday. I simply could not face going to the original dump for the next two years, it was sole destroyng and doing me no good whatsoever. I feel that the appointment went quite well and I was able to put my points of view across to the new Consultant in a dignified, cool and collected manner. For example, I made it clear that I do not agree with offering women who are suffering the shock and profound anxiety of a cancer diagnosis a choice of about 4/5 different operations. I personally was in no state to decide if  I wanted a cappaccino or a latte, let alone else!!! It was as much as I could do to hold the pieces of my life together! Anyway, what is done is done and I am really licking my wounds at the moment. I wanted the Consultant to wave her magic wand and turn me into the woman I used to be but unfortunately that did not happen. The situation cannot be reversed and I have to find a way to move on. However, I do have a funny feeling that this chapter is not over yet.......xxx      

Soosie_Soo
Member

Re: To reconstruct or not ?

Ooo this thread has got busy again, lots to read!! xxx

JAG7
Member

Re: To reconstruct or not ?

Thanks Minimoocher, great to hear such good, positive comments for the tissue expander/implant option 😊
Minniemoocher
Member

Re: To reconstruct or not ?

Hi Jag

I was an H cup before and I have to say that obviously I would rather not have had breast cancer but seeing as I did the reduction has been a massive silver lining!  You know that saying If life gives you lemons make lemonade.....that's how I look at it.

 

My reduced boob is now a D cup and I can't wait to buy some pretty little bras when I get my silicone boob!  It'll be nice to get out of the support and sports bras. I haven't given the reduction a second thought, it healed quickly and hasn't given me a single problem.

 

The only problem with my arm was caused by the lymph node removal, still all very numb but as long as you work through the exercises regularly you will regain comfortable movement. As always I go to my breast care nurse with any problems and she's great.

 

To be realistic you will probably go through some discomfort with the expander but just remember it's temporary and I feel it's worth it to end up with 'proper-ish' boobs! I know my situation was more straightforward as the decisions were really made for me but I hope you are able to come to a decision soon.

 Best wishes x

 

 

Minniemoocher
Member

Re: To reconstruct or not ?

Hi Riversidedawn 

thanks for the info, that's exactly what i'm expecting from the silicone so i'm glad I have realistic expectations !

Take care x

JAG7
Member

Re: To reconstruct or not ?

Thanks for all your replies, it's so good to hear real experiences. I am struggling to work out what to expect and am surprised that I can't find anyone in a similar situation. As I had complete mxin Oct, my skin is very taught & my biggest worry is how uncomfortable the expander will be. I'm supposed to be going on hol 5 weeks after op (only a holiday cottage Lake District) and don't know if timing is right. I am a G cup & know expander can't recreate this so will be looking for a reduction when they take expander out and put implant in. Such a lot to think about!!!

 

Im also worried that any op might cause problems with my arm. It's my right side & I am right handed. I would hate to think that this purely "cosmetic" op caused serious problems and stopped me working, I know most of the people who experience problems had the D Flap op so again I would love to hear from anyone who has just had expander & implant and if they had any complications etc.

 

riversidedawn
Member

Re: To reconstruct or not ?

Hi Minnie, the final implant is more comfortable than the expander, although I didn't find the expander a problem like some posts. It's nice not to have the port which was a bit sore. The silicon is softer than the expander but still very firm compared to the natural side - I'm only a B cup however and had an uplift on good side. I had rads with the expander in and the skin tightened so restricted how big I could go with the final one. Never had any jiggling! Just a pert immovable boob.

Looks fine and symmetrical in clothes although new one sits higher than natural - apparently it's normal for the baseline of our boobs to be one or two finger widths different in addition to natural droop. The skin is quite cold to the touch and I still have little feeling since the mastectomy.
Minniemoocher
Member

Re: To reconstruct or not ?

Hi Riverside dawn,  sorry to hijack this post but can I ask how you find your final implant compared to the expander?  I'm waiting for a date for the swop.

Minniemoocher
Member

Re: To reconstruct or not ?

Hi there, I had immediate implant but maybe my info will be of interest anyway. I was happy with my oncoplastic surgeon's suggestion re the implant as I didn't want any more scarring than necessary. ( eg from tummy flap reconstruction etc)  I have a saline expander although haven't needed any expanding as I had huge boobs and therefore plenty of skin !

 

Everything healed very quickly, the best way I can describe my 'roboboob' is jiggly! The port can be uncomfortable when it moves about but overall it's all fine really although i'm finding the jiggling more annoying as I increase my exercise. I just concentrate on the fact that this is temporary and I'm waiting for a date for my implant to be swopped for a silicone one.  The surgeon has warned me that the silicone one will be more comfortable but obviously will never be like a real boob. I had a reduction on the other side and as long as they look symmetrical when i'm dressed i'll be happy.... ( and there's less jiggling)

 

Hope someone with more relevant experience posts soon. Take care.

riversidedawn
Member

Re: To reconstruct or not ?

Hi jag, yes I kind of had this! I say kind of because I had mx and immediate implant in sep 14, during subsequent chemo the wound got infected so had to remove implant, thus leaving a but of extra wrinkled skin. Between chemo ending and start of rads I had an expander implant in May 15, then in March just gone it was replaced with final one and a wee uplift on the good side to get a reasonable match (in clothes).

Ask away - I think I have been through every thought process and multiple surgery!
JAG7
Member

Re: To reconstruct or not ?

Does anyone have experience of delayed reconstruction with just tissue expander then implant. I had imx Oct and think I am now ready do reconstruction but don't trust other options. This seems the least intrusive but I haven't heard from anyone who has had this??. 

Caroluna
Member

Re: To reconstruct or not ?

Hi girls

I'm feeling calmer and a few phone calls with friends, a BCC match me buddy ( Sue) and they could detect that I was beginning to make a decision. Not there yet but bit more settled. 

So, feel like I'm just nearly there and soon will be off on the ferry heading for Dieppe...or Wichelsea?

Rock on, Caroline

Caroluna
Member

Re: To reconstruct or not ?

Thank you for ....I don't know, giving me 'permission' to be indecisive and all over the place. I know why the medics want us to get on with treatment, but I have to be able to hold out my arm for the anaesthetic with as much confidence as I can. More later, reading glasses fallen out of reach xxxxxx

waveylocks
Member

Re: To reconstruct or not ?

Oh Caroluna what a terrible shock you've had. The trouble is it all happens so fast that many people don't have time to think it through. Also your whole world has been turned upside down. I remember my diagnosis and I was so stunned...it didn't feel like it was real. Then your thinking just goes on hold.

 

Its really good you sought a second opinion -this is not small fry stuff. It sounds like you won't have to have radiotherapy hence them offering you immediate reconstruction? And yes you do need three months to recover if not longer. You must feel like you've entered this nightmare world. Am not surprised you find yourself crying. You are trying to process so much. Am sending you big warm virtual hugs and offering you a box of tissues plus a cuppa. 

 

The one thing I know about BC is that the earlier it's picked up the better for you. DCIS is very early stages and so the prognosis is really good usually. Drastic and extreme actions which I'm not surprised that you are left wondering is it really all necessary? it must seem plain mad for them to do this but also brilliant it's been found that early. Mine was stage 3A -I still pinch myself that they got rid of it and am still free of it. But last year was like I had entered a whole new foreign horror world as I went through treatment. It's completely altered my outlook on life....am much more laid back and that has to be a good thing. 

 

Please don't feel under any pressure to 'woman up'! You are absolutely entitled to feel vulnerable and emotional and scared. Cry away girl, shout scream and rant as much as you want -we understand. 

 

Thinking about you, big big hugs xxx 

 

 

Caroluna
Member

Re: To reconstruct or not ?

Thanks for sticking with me, Waveylocks, I'm struggling.... my diagnosis is DCIS, had 2 WLEs but not cleared margins. It still is hard for me to get my head round  this relatively minor thingy needs to be treated by a bleeping MASTECTOMY. The breast surgeon saying MX and immediate recon (forgive me if I'm repeating myself, I've had to stop HRT and I can feel the last dregs of oestrogen ebbing away and my brian is turning to mush and  I can't stop crying). I was so shocked when I got the MX advice that I got a second opinion..and he gave the same advice.

 

The PSs I saw today were really lovely, one was about 12 and the other must have been all of 17.

They say they can do a skin saving MX if done immediately and plumb the blood in through a hole in the cartelidge between the ribs avoiding using the armpit which was what I thought would happen. But a loooooong op, 2 days in HDU, 5-6 more days in hospital, then AVERAGE of 3 month's recovery... for DCIS that might NEVER turn into anything nasty, but who can take the risk that it might?

Thanks again for replying, just keep with me if you can, I will get my head straight and woman up at some stage...xxxx

waveylocks
Member

Re: To reconstruct or not ?

That's so true Caroluna -thing is you don't know how you will feel about it until you've had it. There in lies the inherent problem. I know how I feel without my boob -it's ok but am far more self conscious and frankly that hasn't been plain sailing either! Suppose the thing is we are trying to repair something that has maimed us but has saved our lives.....and nothing out there is as good as Mother Nature....lol xxx 

Caroluna
Member

Re: To reconstruct or not ?

Thanks, Wavey, this is the prob, not knowing how it would work for ME! That lots of women are really happy with recons and others aren't,  and no way of knowing if I will or won't.  Phew. I'll ask as many Qs  as I can. Xx

waveylocks
Member

Re: To reconstruct or not ?

Carolina are you having radiotherapy? If not then you can have nipple and tissue sparing which gives a far more natural appearance with delayed reconstruction. 

This post has talked anut the negative side of reconstruction. There are success stories out there. Breastcancercare put me in touch with someone like me so I could talk t someone who had had reconstruction. They were extremely pleased with it heirs and had feeling in their new boob. 

In Your shoesI would research your plastic surgeon -it's a big op. Research the reconstruction options you are ending given. Ask for the pro and cons and longer term implications. I must admit I'm expecting my new breast to be numb....

 

Not eceryone has a bad experience!!! 

Caroluna
Member

Re: To reconstruct or not ?

Right, I'm seeing the PS tomorrow to discus immediate recon, DIEP, but right from the start I thought if it came the full Monty I'd not have a recon. The posts seem to counsel this. Does anyone know if a delayed recon is more or less successful/pleasing? It does seem that the medics are more comfy to have us leave hospital with 2 tits, even if one is numb and strange, and another bit of us has to be chopped about to fashion it, and like as not the other one has to be f****d about with to 'match'. 

I just DO NOT KNOW WHAT TO DO.

 

Pod-1
Member

Re: To reconstruct or not ?

I agree Naz - it is a huge huge decision whether to reconstruct and not one to be rushed itno. In fact, many of your supportive comments helped me decide what to do. So thank you for being there and providing much valued experiences and feedback. It was a massive help.

 

In short - I chose not to reconsruct in the end. Before my surgery for mastectomy (and full node clearance) I was super keen to have reconstruction and was adamant that I wanted a breast back. But that was before I knew what was involved. Thankfully, the surgeon had very wisely advised on delayed reconsruction (should I choose to have it). That was actually quite a good move, as it gave me time and space to think about what I wanted. And it was also at that point that I started this forum discussion, becuase I just didn't know what to do for the best.

 

But having had the time to level out a bit and get past the whole chemo, surgery, radiotherapy journey - I can quite safely say that deciding not to reconstruct was the correct one. I may be one sided, but I

have no stiffness or pain issues and have full movement in my arm, and  2 years on I am leading a normal life. My scar has healed beautifully - so why would I go through the pain and discomfort of opening an old wound (so to speak !).

 

I can without doubt recommend delaying on making a decision about reconstruction. Looking back now, it was an almost impossible deicison to make whilst going through treatment, as all that I was focused on was the cancer and getting through to the other end of the journey. There were just too many things on my plate to deal with to be able to decide whether to have reconstruction, and my head was all over the place.

 

But in the fullness of time, I've had the chance to get my head straight and to get used to my one-sidedness and really sit down and think - do I really need reconstruction ? In the grand scheme of things - probably not. I have my life back, and I can focus on moving forward and getting on with my life. No-one is any the wiser - my fake boob (prosthesis) does the trick perfectly. And whilst I do sometimes have a bit of a wobble about not being able to wear certain clothing - I get round it (or just wear something else!).

 

So to any of you out there wondering what to do - please, please wait before you decide to have immediate reconstruction. Get through the treatment first and wait til the haze of the journey has settled.Your head will be a lot clearer after all the treatment has finished etc

 

So there are my latest thoughts. Thank you again to everyone who supported me through my deicison. Podxxxx

 

 

NAZ
Member

Re: To reconstruct or not ?

Hi bellla

i agree, I bloody hate the reconstruction. What is the point of.a numb  biit of muscle stuffed on the chest wall? God alone knows! 

 

I wasn't ' ill' either when I was diagnosed and  also wonder whether women who have been diagnosed and are planing a reconstruction post mastectomy, should have a psychological assessment. I think they should. It's a MASSIVE decision to make and you have to be under no illusions. Recon does not replace a missing body part. Some people say ' well it's only a breast, not like a hand or leg. If that were the case, why don't most women opt to have their breast/s removed if they are so unimportant?? 

waveylocks
Member

Re: To reconstruct or not ?

Sorry to hear of your plight Suzie. It's a hard road we tread. I've not had reconstruction but had a mastectomy with full lymph node clearance. I have all the stiffness you guys complain of and some pain though it's over a year since my op. Physio told me its die to the damage from the op and can't be fully recovered. So can't help wondering if that is to do with the mastectomy more than reconstruction. My recon planned does not involve muscle so hoping to avoid the tummy weakness.