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.
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
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…
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.
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.
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.
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
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
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.
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.
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 ?
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
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.
aww Thanks FizzB. I hope the massaging helps with the tightness. I’m sure the scar will heal well in time. My mx scar has healed beautifully.
Pictures would be really helpful and useful. Not sure how it can be done tho. xx
Hi Naz & Roadrunner
Thank you so much for your responses and also for your support. I am so glad I joined the forum as there is such a great community feel and it’s a great place to get educated. I am humbled at everyone’s input and support. It’s nice to know I’m not going through this alone.
But to answer your question Naz - Whilst I still haven’t properly decided (I think it’s too soon to undertake major surgery - mentally as well as physically) - I think I am teetering on not having reconstruction. Whilst I would love to have a breast back - there seems to be lots of risks and compromises involved. Reading everyone’s experiences about what they’ve gone through and how implants feel etc has been a real eye opener. And I mean that in a positive sense as it means I am better informed about things. I’m unable to have implants due to radiotherapy - which for me hugely changes the ball game.
Maybe in a few years time - there will be some advances in reconstruction - I don’t know. But up until that time, I think I should defer my decision and see how life treats me with one boob!
I can’t thank everyone enough for their continued support.
Pod xxx
Hi Dolly - thanks for your feedback. Wow - 12 hour operation! That is epic! But sounds like you made the right decision for you. How long did it take you to recover and get back to some normality? Altho many say the DIEP is the ‘gold standard’ of reconstruction - I’ve also heard that recovery is also equally as epic! I must admit - I’m not drawn to the DIEP avenue - besides which, I’m not sure if I have enough flesh on me for the procedure!
I’ll PM you for further details xx
I’m in a similar position - trying to decide whether or not to go for further reconstruction. Had mastectomy and immediate LD flap with implant in Feb this year. Wound did not heal, eventually got infected and i had to have wound debridement and removal of implant in May.
Had previously had lumpectomy and rads in 2013 same side so not the best candidate for expander and don’t want any more major surgery. Had two consultations with two different plastic surgery registrars - one didn’t recommend expander and the other one did! Now I keep changing my mind about whether or not to give it a go. I am 60 now and not likely to want to expose any cleavage even if I had one but on the other hand prostheses are a bit of a faff and it would be nice not to need it. I agree absolutely about the feeling of the implant not being part of you and like some alien object stuck on your chest. In many ways I feel better without it and I echo what some others have said about getting your life back, putting it all behind you etc, but finding it really hard to make that final decision to give up on reconstruction. I have another appt in March next year and will have to decide by then I think - I don’t think I can keep putting it off and making another appointment for however many months time - it’s not easy though is it?
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’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?
x