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To reconstruct or not ?

RoadRunner
Member

Re: To reconstruct or not ?

Pod - I don't think you are ready yet.  I had my recon 3 years after the mastectomy, and by then I was as ready as I think you can be for an elective operation, but I couldn't have contemplated it much earlier than that.  Even then it was a really scary thing to do - to willingly put yourself in for an operation where there is no guarantee that you will like the result.

 

As for the muscle twitching - I had completely forgotten about that, so clearly it's not something that happens anymore.

 

Prior to having the LD flap I was concerned about some ladies reporting tightness around their chest, and bulging under the armpit.  I asked the PS about this - he said he did an extra step in the operation to prevent this.  I can't remember anymore what this was, but I also have a scar in my armpit which I think is where the extra procedure was done.

Pod-1
Member

Re: To reconstruct or not ?

Hi Naz

Thank you so much for your lovely reply.  I think you're right.  Perhaps I'm not ready to make the decision so soon after treatment.  I think I need to live with how I am for a while longer,  and see how much it bothers me. Clothing will always be an issue,  altho as I mentioned,  I can wear most stuff without too much of a fuss.  I just get frustrated when trying to buy bra's.  Very few regular shops sell pocketed bra's,  which means going to a specialist stockist, where you pay a little more over the odds.  Not that I'm complaining (at least not too much !!) as the ones I've bought have been great quality & nice style. 

 

Anyway,  that was a side issue.  One of the other things I worry about is the risk involved.  I have every faith in my surgeon,  and I know there are risks involved with any surgery. But once the muscle has been moved,  there's no going back and it can't be undone if any complications happen. Reading the experiences of Matty2 and Alibaby kinda make me think twice about reconstruction. 

 

I'm probably over thinking it and I know there are a lot of 'what if' scenarios and ones I'll never know the answers to unless I go ahead with it. 

 

Certainly speaking to people like yourself and through the 'Someone like me' service does help and is a great way to get educated about a decision.  After all,  it's not something that can be rushed. 

 

Thank you again xx

NAZ
Member

Re: To reconstruct or not ?

 

NAZ
Member

Re: To reconstruct or not ?

I dont't have the twitching in my LD reconstruction, but when I clench my shoulders, it does kind of goes hard - also when I am cold too, which is weird!

 

I have to agree with what Roadrunner said to you last week Pod. The minute you have a mastectomy, everything else becomes a compromise. I guess with being flat for a while, you have time to work out in your own mind, what it is YOU think you are going to be able to live with for the rest of your life.

 

Reconstruction, if done well, can help solve any clothing issues which may crop up and perhaps make you feel more confident in yourself. But it does not replace a real breast with tissue and full sensation. Speaking of which, those of you lovely ladies who have regained feeling, how did that happen? I cannot feel a thing anywhere!

 

Some would argue that reconstruction is like a big 'investment' if you like. Once it is done, you should not need to have it repeated again (but I am sure these implants don't last forever!).

 

It is a tough one Pod and I do wonder if now may not be the exact right time for you to be venuring down that road right now because as soon as you do, you are right back in the 'BC ZONE' as I mentioned before. However, that does not stop you from gathering the experiences and thoughts of the experts on this forum! Smiley Happy

 

Best of luck.

Naz xxxx


Matty2
Member

Re: To reconstruct or not ?

I get the odd 'sensation' in my new boob - had it done in January BUT it is fine, sometimes it is because i have done something/lifted something I am not yet ready to do. It doesn't bother me and even in this early stage of recovery rarely notice it.

The best it, as I have said before, that nurses have commented how good it looks and friends are at the stage where thye are now unsure which is which.

I am very pleased I had it done.

 

however I am still wearing 'big' bras and am unsure how I am going to be with measuring for new bras when the time comes. 

Another BC hurdle to clear in the future!!

 

beryl

Pod-1
Member

Re: To reconstruct or not ?

Thanks Mel - appreciate your reply.  The muscle twitching thing both fascinates me & freaks me out ! But nice to hear that it calms down after a while.  However,  it does sort of put me off having reconstruction though.  On the plus side - everyone has spoken how the shape and results are great after the LD flap reconstruction.  

Thanks for your feedback.  X

Mel66
Member

Re: To reconstruct or not ?

Hi Pod-1
I had LD Flap recon July last year. The muscle twitching did freak me out a bit at first but it does calm down and doesn't do it so often these days. When it does, I barely notice it anymore.

Other than that, it's a great shape, I do have a certain amount of feeling in it (it's only numb in the nipple/skin graft area) and I can wear everything I used to wear including low cut tops.
Pod-1
Member

Re: To reconstruct or not ?

Thanks Alibaby - interesting point. As you say, it's still a muscle and still responds to signals. I am of the squeamish type so it does kind of spook me out thinking about having a twitching muscle on my chest. It's something that plays into my decision about reconstruction. Thank you for your reply. X
Pod-1
Member

Re: To reconstruct or not ?

Hi Kess - Lovely to hear from you again.  I'm completely with you about the DIEP one.  Altho many women speak highly about the DIEP, I just can't face the epicness of it all (long op & long recovery)- not to mention the huge scar that goes with it. 

 

The Someone Like Me service is brilliant and can thoroughly recommend it if you've not already used it.  Even tho I'm still undecided, talking to other ladies does help to formulate your thoughts a bit more.  I have only spoken to one lady who chose not to reconstruct.  Whilst she said,  never say never,  I could totally understand her reasons for not doing so. Such things as not wanting to take any more time off work, not wanting to go through major surgery having gone thru all the initial treatment (chemo etc) and generally wanting to get her life back to normality.  She also said that the more time goes on, the less bothered she is about it.  However,  she did also say that clothes were sometimes an issue,  as both you and I are experiencing.  I have to say tho,  I can wear most clothes without too much of a fuss. So seem to be coping so far.  But I do sometimes miss not having a breast.  But whether it's worth all the trauma of surgery etc to have one back,  I don't know. I think it's too soon for me to decide. I only returned back to work in August,  and life is getting back on track.  So to disrupt it again  so soon after would be major hassle.  And as someone else said,  it still puts you in the 'breast cancer zone'. I'm only just coming through the other side of it & don't really to go back there ! 

Good luck with your decision and take your time.  X

AliBaby
Member

Re: To reconstruct or not ?

Re the muscle twitch thing: don't forget that LD takes muscle from the back and whips it round the front. The muscle itself still responds to its original signals, so when you clench your shoulder blades for example, it will make your boob twitch at odd times. Only you will ever know but you do get used to it. Now that my failed recon has left me with the muscle and excess flesh round the front, I still get the twitch but after nearly 11 years, it's a very small price to pay.

Kess
Member

Re: To reconstruct or not ?

Hi again Pod. It's good you've had chance to speak to women through someone like me that have had recon and are happy about it. I too know lots of women who are content (although it may have taken a few ops to get there!). Have you also spoken to people that didn't have recon to see how they feel? I do find the fact some clothes are just impossible annoying, and I am not happy in open changing areas anymore, but otherwise I really think I am ok with it. I just keeping looking at that diep op and thinking there are better things I could do with 3 months of my life!
Pod-1
Member

Re: To reconstruct or not ?

Thanks FizzB. I was most curious when I heard about the twitching thing & even chuckled slightly, as it's something that hadn't even crossed my mind, and to have something twitching on your chest sounded a bit, well, almost spooky! . But thinking about it - like most other muscles we have, they can twitch too. And given that the LD flap is also a muscle, that isn't immune to twitches either.
Thanks for your feedback. x
FizzB
Member

Re: To reconstruct or not ?

Hi Pod. I have heard this mentioned on threads. I bilateral LD & had a couple of very odd sensations in the week post-op but have had nothing since. Don't know if that helps at all? I imagine that the muscle twitch is, again, one of those unpredictable post-op variables??
Pod-1
Member

Re: To reconstruct or not ?

I have a question for all you ladies out there who have had the LD flap reconstruction. I have recently spoken to a couple of women who have had the LD flap and they've mentioned that they can sometimes feel the reconstructed muscle 'twitch'.

 

How many of you have experienced this, does it happen often and does it bother you/affect you ?

 

Many thanks

 

Pod

Dolly15
Member

Re: To reconstruct or not ?

Hi, I had a mastectomy with immediate reconstruction using my tummy tissue exactly a year ago at Ninewells hospital. As a bit of a chunky monkey, I had plenty of tissue to spare but after considering the options, this was the one for me. It was a long  operation, some 12 hours in total including prep and the recovery room but the result is truly remarkable .Yes,  I had some post operative pain but I can liken this to a bad period pain and it passed after a day but we are all different so this varies from person to person. I am now alsoow the proud owner of a prostheses nipple which from a distance looks like I have matching pair. No one has perfectly symmetrical breasts so have a slightly smaller reconstruction is OK and with a bra on, you really cannot tel the difference.  For me , the numbness is a small price to pay for retaining my feminitiy and I am eternally grateful to my marvellous plastic surgery team. Aways happy to be poster girl ( headless of course) to show what can be acheived.

 

Matty2
Member

Re: To reconstruct or not ?

I had immediate implant, all tests before I went for it showed low risk.

I chose to have the lymph nodes removed and tested first to make sure I would not need radiotherapy, thankfully eveything was clear and 3 weeks after lymph node removal I had mastex with immediate implant.

 

It has not been an easy ride but slowly coming out of it. I developed an allergy to micrpore which made the wound break open and have spent weeks backwards and forwards, swabs antbiotics etc to heal.

Finally this week I have healed properly.

My new boob is a good shape and swelling is going down, 2 seperate nurses who have been changing the dreassings have said how good it looks and I have been asked which one it is bu other folk as it looks so good.

 

Despite the problems I have never felt 'Why?' It was a choice as I didn't want more major surgery, I figured just the one was enough. I do  have an option of having the other one made to match, which despite the problems I have not discounted

Beryl

Pod-1
Member

Re: To reconstruct or not ?

Thanks RoadRunner

It is a constant daily mental battle & you sum up the arguments for and against very well.  It's exactly what I'm bellyaching over.  I do quite often miss having a breast (for all the reasons you mention) - clothes and confidence etc but do I want to be living with more scars and go through all the trauma of surgery and recovery ? I don't know.  In the grand scheme of things - it would only be a short-ish period out of my life, so in one sense, it kinda makes sense to go ahead with it.  

 

I think where I'm sort of at is that perhaps I'm not ready to make a decision yet.  I am only 12 months down the line post treatment.  So maybe I need more time to think things thru.  As you say - only I can make that decision. 

 

Thank you for your feedback

Pod

RoadRunner
Member

Re: To reconstruct or not ?

You hit the nail on the head Pod in an earlier post when you mentioned the word compromise.  After a mastectomy, every option is a compromise, and your choice is to decide which compromise you would rather live with:

No recon - you live with a flat chest on one side and have to deal with a prosthesis and difficulties with underwear/swimwear/low cut clothes/getting changed in communal areas.  Also it is a daily reminder of breast cancer.

Recon with implant - this is a cosmetic solution and can improve appearance greatly, also buying clothes etc is much easier, but you are living with an implant inside you and it does not feel natural to you or anyone else.  There is also the issue that it may have to be replaced some years down the line.

Recon with your own tissue - gives a more natural result than an implant, but you are having surgery elsewhere on your body with the scars and any other side effects that result from that.

 

Only you can decide which compromise you would rather live with.

Pod-1
Member

Re: To reconstruct or not ?

Thank you so much Alibaby - not late at all.  All responses very welcome.  

Heck - it sounds like you've been  through rough times. I can well understand you've had enough of surgery.  It's a lot to cope with over and over. There must have been many ups and downs for you,  thinking that each surgery was the last one.  I can totally sympathise how you've come to your decision. 

 

It's interesting reading your post though.  I've spoken to a few ladies (through the Someone Like Me service) and thus far,  they've all been happy with their reconstruction with very few complications. However, most of them have had the LD flap reconstruction. Other ladies on the forum have also been mostly pleased with their reconstructions too (albeit with a few niggles about how the implants sit and feel).

 

So, it's useful to hear the other side of the story, in terms of not so positive experiences. I sometimes get self conscious about what I can wear but then think,  is it really worth putting myself through all that surgery for the sake of it.  I'm finding it really tough trying to weigh up the arguments for and against reconstruction.  But reading your post has been a bit of a reality check,  so really appreciate you sharing your experience. 

 

I hope too that you come to terms with your new body image.  

 

Thanks again x

riversidedawn
Member

Re: To reconstruct or not ?

Sounds like a rough ride AliBaby, this is one of my concerns that its not all over after the recon. Can't imagine repeated ops over ten years. I had to have impant removed after chemo started as infected. Due to have expander put in in may, then replace that wirh silicon later. All infection risks. Hope you cone to terms with your new body.
AliBaby
Member

Re: To reconstruct or not ?

Hopping on late! I saw surgeon yesterday to decide whether to reinsert implant. I had immediate recon on left breast & augmentation on right breast 10 years ago & have now had 6/7 further surgeries on left (fully removed breast) and also one replaced implant on right due to a rupture.

I loved having two boobs as it does mean you don't worry about necklines etc. But after so much surgery to rectify things (last surgery was last July after a severe rupture that became infected & has prob spread silicone all round my body as I don't have lymph system on lhs) I decided enough was enough.

I regret it as I'd rather have two bumps not one, but I think maybe my body was telling me that implants aren't for me.

Pod-1
Member

Re: To reconstruct or not ?

aww thanks FizzyB - appreciate your input & feedback. Goodness - sounds like you've been through quite a lot. But glad to hear life is returning to some normality.
As soon as I've figured out how to PM you - I'll put some questions your way 🙂 x
FizzB
Member

Re: To reconstruct or not ?

Hi Pod1 I had an bilateral mx with immediate LD flap & implant reconstruction just over 8 weeks ago. I'm 44, fit, active & a regular runner and have started a phased return to work last week. I had 8 days in hospital (mainly due to blood loss during surgery & subsequent, rather delayed transfusion!!). The first couple of weeks were very difficult but I managed a walk with hubby and dog every day which I am sure helped a lot. Any questions you might have regarding LD flap recon do feel free to PM me. I'm happy to answer anything.
Pod-1
Member

Re: To reconstruct or not ?

Thank you Riversidedawn - you make some interesting points about surgery and what options may or may not be available to me. Thank you also for highlighting that book. It sounds like it will be valuable in helping me make a decision - so will probably order it.
Thank you for your input x
riversidedawn
Member

Re: To reconstruct or not ?

I understand that an expander can't be inserted under irradiated skin as the skins too thin to be stretched. I had MX with implant recon in September 14 but got an infection during Chemo do had the implant removed but kept the skin. My surgeon is going to use an expander to create a shape before radiotherapy but will replace it at a later date with silicon one.

I know that doesn't help you! I was also I. The dilemma of which recon to have as the first implant failed. I'm also a size 10 sporty person with A/B cup. I have a weak back so didn't want to risk diep or LD flap. However if I was to wait til after radiotherapy we discussed taking skin only from the back and using that with an implant. It all depends on your surgeons abilities as to what is on offer.

There's a good book "the breast reconstruction guidebook" by Kathy steligo which discusses all the options in detail.

I have a friend who had diep at Christmas when I had my op, u fortunately hers didn't take do they did LD flap a week later! She was in hospital 2 weeks, and back ridi g horses within 3 months.

Good luck with your decision x
Pod-1
Member

Re: To reconstruct or not ?

Aww thanks Naz.  I have heard of the tissue expander - but this wasn't discussed with me.  I don't know if it has the same implications as an implant following radiotherapy - so maybe this is why it wasn't mentioned.  I will contact my surgeon/breast care nurse to discuss that option.  Anything that involves less surgery & recovery gets my vote !

 

And I agree - having surgery of one sort or another does keep you in the BC zone.  I will have to think long and hard about having reconstruction.  Thankfully there is no rush, and you never know,  some alternative reconstruction might be available in time. 

 

I do often think about the practicality of having another boob.  Having a prosthesis does seem a bit of a faff at times, and as I mentioned it does make me more aware of what I can and can't wear,  which frustrates me.  - but on the flip side of it, it does more or less what it was designed to do - so do I need surgery ? I don't know. 

 

It's such a dilemma.  Thank you so much for your comments.  X

NAZ
Member

Re: To reconstruct or not ?

I would agree with you Pod, about going through these operations if you can't feel what is there. It sort of makes you think long and hard about WHY you are having a reconstruction i guess. For me, it was all about the practicalities and not having to faff with a prosthesis each day etc and being able to wear exactly what I want. I thought BC had taken enough from me, without dictating what I can and cannot wear! I would give it some time and thought now, what ever you decide, will entail further surgery and recovery, which keeps you in the BC ' zone'. You may realise that you can live happily with what you have got now, you may decide later on that you want something there after all. Has tissue expander been mentioned ? These are just implants which sit behind or under the muscle ( don't know which) and give you a breast shape. Quick op, quick recovery.. Some smaller ladies are pleased with the results x x

Pod-1
Member

Re: To reconstruct or not ?

Thank you Stresshead. You haven't put me off.  You've made some very valuable comments & I'd rather hear the truth & reality of it so I can make a proper informed decision.  You make some interesting points about the 'shape'  of the boob and the nipple reconstruction.  I have always been told that whatever reconstruction I may (or may not) go for - the new breast will never match the existing healthy breast, which I have come to accept. So your comments about it only being a 'shape' ring true to what I've so far been told.  Also interesting about there not being any feeling in the reconstructed breast.  I know that how it feels is just one aspect of reconstruction - but it seems an awful lot to go through if you can't feel what's there.  

 

I have only spoken to one other lady who's had the DIEP done and she talked about not being able to walk properly for a good few weeks. It does sound like quite a traumatic thing to go through for all sorts of reasons.  The length of the op alone is quite an eye opener.  How long did it take you to recover from the op ( in terms of feeling sick etc) ? 

 

I'm pretty certain I don't want the DIEP one.  Sounds like too much to cope with. I only got back to work in Aug 2014 & started to get my life back on track.  To go through another however many months it is of upheaval and a degree of stress is perhaps too much to think about at this moment in time.  Plus I think I too would need to eat a few Mars bars too ! I am a size 8-10 so not over flowing with handfuls of fat ! Even tho I have a slight stomach on me - think I'd rather leave it be.  

 

Thank you so much for your comments and feedback.  They have been very valuable. X

stresshead
Member

Re: To reconstruct or not ?

Sorry, the last bit of my post has gone awol.

I hooe what i have said hasnt put you off any procedure but just wanted to expalin the realities.

This is a major decision which only you can make...dont be rushed into anything.

The op is major, the recovery is major but the results can be brilliant.

I'm sure the more information you glean the better decision you will come to...the one thats right for you...Good luck!!

stresshead
Member

Re: To reconstruct or not ?

Hi Pod-1,

I had a diep reconstruction following my diagnosis of lobular breast cancer in 2011. An aquaitance of mine had had it done the previous year and had told me it was the 'Rolls Royce' of reconstruction. To be honest i never really considered anything else......which i probably should have done as this is a major decision. As the cancer was lobular and more likely to occur in the other breast i asked for a bi-lateral mastectomy...this was also an advantage as a diep can only be done once. I was told to eat a few more mars bars as i hadnt got excessive fat (ha ha) and i was told i wouldnt have 'Daisy dukes', which i didnt want anyway, being a 34 a/b.

The operation is MAJOR...shouldn last about 9.5 hours...mine was 12.5!!

The recovery is also no walk in the park but you are monitored constantly as things can go wrong, as with all surgery.You have drains coming out of everywhere for about a week. As soon as they are out you are usually allowed home but you are bent double for quite a long time and would need help around the house.

I'm not trying to put you off, just trying to tell it how it is.

 

I havent actually seen another diep in reality but i am told my results are fantastic. You have a circular scar where the nipple was which does fade and can be disguised(not readicated) with nipple tattooing (which is painful but worth it). I also had nipple reconstruction which, i have to say, i was a little disappointed with...gives an indication of a nipple rather than a replacement.

i did also have a fat transfer to even me out a little.

I havent mentioned the tummy tuck have i?.......you are right, you do look like you are cut in half but the scar does fade, However i do not have a flat stomach, more of a ridge but in the grand scheme of things i dont consider this an issue.

I have had pain since the op but a lot due to axillary clearance i think.

One of the most important things to remember i think and its not sually mentioned is that you have to realise that reconstruction gives you a 'shape' and thats all. Lots of my friends said.."oh you'll have a lovely new set of boobs"...this is not the case. Your reconstructed boobs have no feeling or sensation whatsoever. I think its especially important for both you and any partner to understand. Again, in the grand sheme of things this doesnt figure highly now on my worry list.

 

Pod-1
Member

Re: To reconstruct or not ?

Thank you Naz & Judith

 

The feel of the implant was always a curiosity for me & reading your comments has been helpful.  It's hard to imagine what they would feel like when you don't have them.  Having felt them when I met with the breast care nurse - they did feel a bit sort of weird and unnatural.  My surgeon pointed out that with implants - the breast would sit more 'pert' whereas with your own flesh - it has more natural'droop' ! Whatever route I go down - there is always going to be a compromise / sacrifice.  

 

I am more conscious of what I can wear these days. Altho to be fair,  I never wore anything too revealing.  But in the event where a nice posh strappy dress is required - having to wear a prosthesis somewhat limits the choice of attire.  I know it sounds vain - but I do think twice about the sorts of things I can wear these days.  

 

I really am going round in circles with this decision.  I'm sort of leaning towards not having reconstruction done. .....at least not for the time being.  I'll probably change my mind tomorrow and tomorrow !! There are always advances in surgery & medicine,  so maybe I should wait a few years til something else is available (altho not sure what! ).

 

Thanks again x

NAZ
Member

Re: To reconstruct or not ?

Hi
For me, the implant always feels present and does not feel natural at all. Rather like something stuck to my chest. It gives great shape under clothes and a swimming costume and is hassle free at the moment. I suppose there will come a time when the thing needs replacing, but I will cross that bridge when I get there. Currently contemplating having my scar tattooed over, so it won't really represent a breast ( because it isn't) but more something pretty for me to look at in the bath 🙂

Judithvr6
Member

Re: To reconstruct or not ?

A bit more info on how an implant feels.
I would say that when lying in bed, on my front, the natural breast just felt natural, squished well and almost felt 'not there'. The breast with implant feels (even before contracture) as if I am lying on something like a bean bag. Weird, firm in a squishy way but by no means does it feel natural. When lying more on that side I always sleep with my arm folded to provide a bit more support so I do not have full weight on it.

Likewise when lying on my back sunbathing the natural breast falls quite flat, wrapping down the side slightly.
The implant breast sits up and calls out to anyone that wants to look closely that 'hey, I'm half silicon'  !! Ok. maybe it's not that noticable to others, family and friends tell me it isn't but I think it is very obvious.

Pod-1
Member

Re: To reconstruct or not ?

Thank you Judithvr6 (and to Lolly)

 

You make some valid points there & def food for thought.  One of the main reasons I can't have implants is because of the risk of capsular contracture, besides which, I'm told my skin wouldn't support the implant due to radiotherapy which has made the skin very thin & dare I say vulnerable.

 

I have heard and read from other comments that with the LD flap that implants are added at a later date.  I don't know how these affect the skin - but I presume they are inserted behind the reconstructed muscle where there is (I'm guessing) more support for it. 

 

I was interested to read how the implants feel.  The breast care nurse showed me examples of the implants which I could touch and feel.  Whilst I was satisfied with what she showed me - I was curious as to how they would feel once inserted.  They felt quite light to touch  but equally substantial - so maybe there is a chance of feeling lobsided ! It's something to consider.  Thank you for your feedback.  

Judithvr6
Member

Re: To reconstruct or not ?

Hi,
I can't advise on the 2 types of reconstruction available to you as I've only had an implant after a lumpectomy.
I had the lumpectomy in 1992 but didn't have an implant till 2005 as no one offered it earlier and in 2004 my notes were lost and I waited a year thinking all was in progress! (I used to be VERY patient).

But where I might be able to offer advise for is if you go down the LD flap and implant route (I know very little but seam to have read that an implant is used with the LD flap?).
You say you are a sporty person. I am a runner and started on marathon distances in 2013. My implant started playing up (capsular contracture) by the end of 2013 and I'm putting it down to the extra 'bounce' of the distance (races but more so the training mileage) even though I've been doubling up with sports bra & compression bra.
I would say research implants very well, they may give a good look but the feel is very different. And I still have a good shape but capsular contracture is uncomfortable and means further surgery of one sort or another.
And they do not last for ever. Expect to have to need surgery due to them at some time in the future.

All the best with your decision.

lolly73
Member

Re: To reconstruct or not ?

Im 41, had wle in 2008 and wle then mx in 2014. I would love to have recon if it were a day surgery and a week recovery! But whilst my kids r still young i cant go through all that time in hospital and recovery time. Why put myself and my family through it all again if i dont have to. Maybe one day i will, but its major surgery i dont really fancy opting for....

Pod-1
Member

Re: To reconstruct or not ?

Hi Jane

 

Thanks for your reply. Goodness - you must have gone through a bit of roller coaster finding that lump.  I'm glad for you that it was just fat. 

 

Making the decision whether to reconstruct is such a tough and personal one.  It's interesting & useful reading the comments people have made.  And it's good to hear both sides of the coin too.  Whilst most people have had no complaints about reconstruction - one lady (Road runner) chose not to reconstruct for a lot of very valid reasons and I totally get why she opted for that route.  I'm not sure if I want the hassle and trauma of going through more surgery. I have to weigh up how much I really want (or need) a breast vs surgery. My surgeon also mentioned about the possibility of matching up the other healthy breast. Even though I'm quite small - I'd still prefer to keep my remaining breast as is rather than to start messing around with that one too.  Something to take into consideration too. 

 

I'm trying to speak to as many people as possible to make an informed decision. 

Good luck with your appt.  X

Elsa
Member

Re: To reconstruct or not ?

I've got the same dilemmas.  I had a mx 3 years ago and at my most recent check up the Dr suggested reconstructive surgery and booked me a longer appointment with him to discuss it and look at before and after photos.  However, a few days before the appointment; which was the week before last I found  a small lump under my mx scar so just couldn't even think about recon until I knew what the lump was.  I had a scan last week and luckily the lump was a fatty one and nothing to worry about.  I now have another appointment in the recon clinic in 3 months to talk about it again but I can't get past all the scarring that goes with these ops; I know they'll heal and fade in time but they'll still be there.  The Dr said that sometimes they have to operate on the good side to match the breasts up and again I would have scarrring on a perfectly good breast.  I also don't like the thought of possibly losing strength in my upper body/arm/shoulder should I go for the LD flap.  My mind just goes round and round with all the issues of a recon so maybe that's telling me I'm not ready to consider it at this point in time.

 

Jane x

Pod-1
Member

Re: To reconstruct or not ?

Hi Kess

 

Thank you for your reply.  It is such a massive decision what to do.  Don't let the surgeon push you into anything your not comfortable with.  These sorts of decisions can't be rushed. And at the end of the day - you have to do what's right for you.  But we're both in the position of 'what is right for us ?' 

Like you - I am also a lot less bothered by the mx than I thought I would be.  But there are days when I miss my breast & some days I'm fine about it.  I have constant battles with myself about how I feel about not having a breast and the dilemma goes on - which is why I'm trying to sound out as many people as I can. 

 

I couldn't bear the thought of the DIEP recon - many aspects about it puts me off, despite the results being good. So I'm left with the LD flap, which is giving me a constant headache ! As I mentioned in one of my last posts - so far I've heard only good outcomes and people have been generally happy with the results and also with the level of strength in their upper body/arm & shoulder.

 

Maybe I'm not ready to make the decision.  Like yourself - I've been through enough already.  So maybe I should wait until I can take on board the enormity of the next steps.  

 

It is such a personal decision & thankfully as you say - there is no time limit on when it can be done.  I've contacted the "Someone like me" service through BCC and I'm awaiting to speak to someone who's had reconstruction. If you've not already done so, it might be a good idea for you to do the same, just so you can get a few feelers about the experiences from other ladies. 

Good luck with your decision & don't forget,  take your time and don't be rushed into it.  X

Kess
Member

Re: To reconstruct or not ?

Hi Pod-1. I can really relate to what you say. I am facing similar choices to you, although I still have a few months to wait before I could start the process (op was last August). My surgeon is really pushing the diep op, but I keep telling him I really am not keen. I feel well now and after 9 months of hard treatment I really don't want to make myself ill again when I don't need to. And It would impact on my family when we are starting to get over this. I wouldnt say I am happy to be one-breasted, but I am certainly a lot less bothered than I thought I would be. So my inclination is to leave as is. But its a very personal decision. The good thing is that even if you (or I!) decide no to recon, there is no time limit. You can decide yes at any point in the future...
Matty2
Member

Re: To reconstruct or not ?

When we first knew i had breast cancer my daughter told me not to worry as i could have a really pretty tattoo over the scar. It really cheered me up. 

I have now had an implant so the tat is not necessary except maybe one for a nipple.

 

Lovely idea Orange girl,

A way to become feminine again

 

Beryl

NAZ
Member

Re: To reconstruct or not ?

Orange girl, your tattoo plan caught my eye. Can I ask if you are planning on going to a local tattoo parlour, or somewhere special? I have a really prominent scar on my reconstructed breast and am sick of the sight of it after 3. 5 years ! Would love to have something pretty there....

Pod-1
Member

Re: To reconstruct or not ?

Aww thank you Orangegirl - and to everyone else for their responses.  This is a really tough decision to make and I'm not going to rush into it.  I have constant battles with myself.  Some days I think "yeah - I'm fine the way I am,  why go thru the hectiness of a major operation" and then some days I feel robbed of a breast and want to put something there to give me my feminity back.  My prosthesis does its job - but I just feel it's not part of me. 

 

That said - I always come back to the thought of having major surgery and that is the thing holding me back.  I know for certain I wouldn't have the DIEP one - besides I don't think I have enough fat on me ! So the only option left is the LD flap. But do I want to risk reducing my sporting abilities for the sake of a breast ? It's one of those "you never know what could happen' situations and is the grass always greener ?!

 

It's good to hear both sides of the coin & I value everyone's input.  

 

So far - I've heard very good responses to those that have had reconstruction.  Not yet heard any horror stories ! So still weighing it up.  I totally get that if I went ahead with reconstruction - the breast would never be a perfect match.  So do I want to live with that ? I don't know.  

 

Those who know me accept me for who I am & my body shape has no bearing on their love & friendship for me.  I wouldn't be doing it for other people - it is totally how I feel about it.  But the fact that people accept me the way I am is also something to think about. 

 

Tough one.  

 

But I will def talk to as many people as possible & get in touch with the Someone like me service too. 

 

OrangeGirl
Member

Re: To reconstruct or not ?

Hi,

I too was dx in Sept 2013. L sided mx, chemo, radiotherapy and managed 10 months of Tamoxifen (no more!).

I have chosen not to reconstruct.

I cannot have an expander/implant due to RT. I haven't got enough fat for DIEP. My only option is LD but I am not willing to give up any more time off to have a mound of flesh plonked on my chest wall. I don't want any more time in hospital. I don't want any more scars. I don't want any more time off work. I don't want to even minutely risk impacting my sporting activities.

I do endurance off-road running (anything up to 100 miles), I need to wear a rucksack for this and also for mountain biking. I also climb and road ride. 

My activities are my life. I cannot justify, even a tiny bit, the possibility that I may have reduced strength, mobility or function. 

Of course I'd love my boob back. Reconstruction cannot do that. I manage fine with a prosthesis. I have a super-light one for running!

Not to reconstruct IS an option but it's not easy to come to terms with. I'm not sure I'll ever get used to having had a mx.

I am currently planning a beautiful tattoo of irises to cover my mx scar (Iris was the name of my Grandmother who had breast cancer too).

 

Good luck.

Just thought I'd offer the other side of the coin.........

NAZ
Member

Re: To reconstruct or not ?

I had an LD flap reconstruction 3.5  years ago on my left side. Implant was inserted 5 months later and then i had an uplift to my heatlhy breast, followed by a nipple reconstruction and nippple tattoo.

 

I was not an ideal candiate for DIEP or TRAM (not enough spare fat). The LD has given me symmetry and I can wear exactly what i want. For me, I needed something to fill the missing space (not a prothesis). I have a scar on my back (covered by my bra strap) and two scars at the front (one on each breast).

 

Recovery was about 6 weeks ( I wasn't working at that time) but did have two very lively children to care for and I managed fine.

 

I took voltorol for pain and regularly.

 

I have full movement in my left shoulder and arm and I also swim three times a week, with no problems.

 

Making the decision to reconstruct, is a very personal one and something which you need to think long and hard about. You need to think about WHY you want to reconstruct and the reality of living with reconstructed body part. You are unlikely to have any feeling in your reconstructed breast and your nipple (if you decide to go ahead and have one) will be for cosmetic purposes only. The lack of sensation is something i struggled with massively and have really only accepted this is how things are, more recently.

 

Do I regret my decision? No. Reconstruction for me makes life from a practical perspective, so much easier and frankly I could not entertain the idea of not having it there now.

 

Take your time, talk to others, call the someone like me support and think some more..

 

Best of luck.

Naz

 

 

RoadRunner
Member

Re: To reconstruct or not ?

I had a delayed LD flap (mx 2007, recon 2010) with implant.  It was the only one I was suitable for, having had radiotherapy, and not having any tummy fat for a DIEP.  I would not have wanted a DIEP anyway, as I knew that big scar across the tummy was not for me. 

 

I had six weeks off work for the main op.  The implant was put in six months later, and a nipple recon six months after that.  Each of those were just a couple of days off work. 

 

I am a runner, and I swim.  My arm has been less strong ever since the mx, I have not noticed any further reduction in strength following the recon.  Occasionally I find I overdo something, and my arm will ache for a while, but as I said it has been like this since the mx.  I swim 70 lengths once a week, and only occasionally do I find my arm getting tired before I have finished.

 

For me it has been the best thing ever.  I hated the prosthesis; running gear/getting changed in the gym is so much easier, as well as not having the daily reminder of a mx.  But it is such a personal thing, I think you have to go with your gut instinct here, and try not to be swayed too much by what others say.

June_BCC
Member

Re: To reconstruct or not ?

Hello Pod-1

 

Here is a link to some information on the  'Someone Like Me' service that Saffronseed mentioned.

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/someone-me-phone

 

With best wishes

June, moderator

saffronseed
Member

Re: To reconstruct or not ?

i think the decision on reconstruction is a big one an you need to consider carefully before you decide.   Why not ring the someone like me line in BCC they can put you in touch with ladies who have had all types of reconstruction and you can listen to their experience this will help you with your decision.  Like you I was in too minds - having been through the mill with treatment I didn't really feel up to any more surgery but I wanted my body back and whilst my prothesis was doing its 'job' it wasn't me and i wanted to wear what I liked without worrying.    I actually went for the DIEP - yes it is a big procedure and the recovery time is around 6/12 weeks dependent on you and your body.  I was up and about after 6 weeks but didn't go back to work until about 12 as it did take a lot out of me.    However I am so pleased with the outcome and I am so pleased I made this decision.  I did have scarring at first but my tummy scar (which was right across my lower tummy) has now almost healed completely and my new breast is fantastic -scaring very faded.   I have since had an uplift on my good side (day surgery) and a new nipple on my new breast (under local) and I have had some Lypo too just to 'even' me out a bit.   It is more time off work and I too felt a little 'guilty' about this but to be honest I gave so much for my emplyer having little or no time off for years and years so my treatment and reconstruction was payback time in my view.   Wishig you all the best xx

Pod-1
Member

To reconstruct or not ?

Hi - I'm new to this forum - so apologies in advance if I've posted this in the wrong place.

 

I was diagnosed with ER+ breast cancer in Sept 2013. I've completed all treatment(chemo and radiotherapy) and surgery and am post 12 moths mastectomy and was advised at the time to have delayed reconstruction - which I was happy with.

 

Its now come to the time when I'm starting to think about possible reconstruction options. But my options are a little limited. I am unable to have an implant as I've had radiotherapy and both the Breast Care Nurse and surgeon explained that this because the radiotherapy makes the skin very thin and would not be able to support an implant. The risk of  future complications was too high. So that option is off the cards.

 

The only two options that appear to be available to me are the LD flap and the DIEP. Both I have to say appear to be quite gruesome procedures ! I met with the Breast Care Nurse today and she showed me pictures of both types of reconstruction. I was most horrified at the scarring of the DIEP one - almost looks like you've been sawn in half !! I'm pretty sure I don't want that one - even though the results are quite good. I've also been told that it is quite an epic operation with equally epic recovery time. So not sure I want to put myself through that.

 

I was half contemplating the LD flap one - but there are slight implications to this one as well ! My surgeon said that even though the results were good, you can lose strength in the arm/shoulder area. As I am a moderately sporty person (play netball and do some running) - I felt I would still need the strength in my arm to continue my netball activities. So am re-thinking this option.

 

So I guess - what I'm asking is what experiences have any of you had with either type of reconstruction and what are the pro's and con's to either one ?

 

Part of me thinks I'm happy as I am and I have my health back. But the other part of me wants to have a breast back - but am not overly keen on the trauma and recovery of the epic procedures ! I took 12 months off work whilst I was on treatment etc - so not sure I want to go through another 6 or so months of further recovery.

 

Even though it sort of sounds like I've made my mind up - I would really welcome some feedback as to how the reconstruction has been for any of you ladies out there.

 

Thanks for listening.