To have or not to have a DIEP reconstruction

[LollyMum]

Hi,

I had a mastectomy with immediate DIEP reconstruction in August last year. I was in a right state about it and wasn't sure whether to or not but I'm very glad I did. I won't lie, the surgery is major, particularly if you've lost weight on chemo etc, but it means your clevage looks completely normal, and the new boob, whilst slightly smaller than my non cancer one, isn't too different and because it is natural it will adjust if I gain or loose weight. My only issue really is that it has been swollen since radiotherapy which is annoying. 
I have to go back to have a nipple done, but I just chickened out and delayed it for six months as I am only just getting some energy and health back after cancer treatment all last year. 

Hope this helps

F

[Motherhubbard]

I had mx with immediate diep reconstuction aug 2013. For me it was the best thing. From the outside my shape is amazing and nobody would guess I am so glad I had such a great team working on me. Even in the nude the only way that you would know is that I do not have a nipple. Of course different if you are having delayed but it was important for me to look as normal as possible from the outside even if I still hurt in my heart. I feel that I have a lot yo ge thankful for plus a free tummy tuck! Think long and hard as you may feel that you are content as you are , it is only you who can make that final decision .

[Kess]

It is a big decision and one you dont have to rush into it. Take as much time as you need. Before I had my op last August I thought I would want a recon for sure, but already I have kind of accepted how I am now (and I have to wait 2 years before I should consider it), and I just dont want to put myself through major surgery and long recovery (diep is really my only option). If I was very unhappy as I am though then it could well be different. Dont forget you can even say you want to wait another year if you want to - there really is no time limit.

[Elsa]

It is a massive decision and at the moment my gut feeling is to maintain the status quo and stay as I am.  My appointment is on 26th Feb when I will be shown before and after photos; hopefully I will also be given some contact details of women who have already gone through this op.  I will have a look for amoena life online as well.

I have thought about having it all done in one go i.e. another mx plus diep but don't think I could go through with it.  I had a post op infection after my mx and it wasn't pleasant; just brings back bad memories like the district nurse who pulled off my dressing and said out loud to her work colleague 'now there's a rip roaring infection if ever I saw one!'  I felt so low and vulnerable at the time and her comment did not help matters!.  My skin also reacted (blistering, inflamed) to the dressings they used and I have to take this into consideration too.

The question I have to answer myself is can I live with myself as I am?  I know my hubby is ok with it all; he's happpy that I'm well and getting on with life.  It's interesting though that he isn't talking much (if at all ) about this possible recon  which makes me think he'd rather I didn't go through with it.  When I try and draw him on the subject he says it's my choice and he'll go along with whatever I decide.  I'm trying to put myself in his shoes and what it's been like for him through all this breast cancer journey and it must have been so hard for him.  Maybe the thought of another major op is a step too far for him at the moment.

Thanks Stresshead for your comments; I really appreciate your frankness that's what I need right now

x

[stresshead]

hi Elsa, huge decision you are having to deal with..take your time. About lopsidedness..my sister just had a lumpectomy and she is very very lopsided..much worse than me so maybe not such an issue. I chose to have a bi-lateral mastectomy and was backed up by my consultant, as i had lobular cancer which is more likely to spread and also because i knew this was a one-off operation. Maybe that could be a way forward for you?? the medical staff are brilliant..after the op you are checked every 20 mins or so  and i'm sure they would be well aware of signs of post op infection. Maybe your hospital or breast care unit has some pictures of real results they could show you. I think the big issue is not to expect to be how you were before this awful disease. I remember my friends saying..." you'll have a lovely new pair of boobs"..but this isnt so...one of the major hurdles i had to get over was that the reconstruction gives you a 'shape' and to the outside world you have real breasts. However the reality is much different...you have no feeling or sensations.. they are merely a 'form'. However please dont let all this put you off....i cant imagine what i'd be like if i had to look down and see nothing there although i know there are millions who are content with this.'; There is a magazine (or used to be) called Amoena Life (the company do specialist lingerie). You can access back issues on line and i know there have been some good articles in there on this subject. At the end of the day it is  a decision only you can make..as if things arent tough enough already!!.. i dont think we can be 100% sure of anything and sometimes have to go with our gut instinct. Wishing you the best of luck.x

[Elsa]

Thanks for that stresshead.  So sorry to hear your cancer came back.  

I always think about worst case scenarios and for me it would be:

a) post op infection

b) being lop sided altough I know you can have corrective surgery but this means yet another op.  I don't really want any scarring on my good side as already have enough to deal with

c)must confess that the abdo scar line for me is nearly a deal breaker but I will wait until I've discussed this with surgeon

d) what if I go ahead with the DIEP then get cancer and need mx on other side; the procedure can't be repeated twice and I'd need another type of reconstruction (how negative am I !!!)

The plus side is that no muscle is used, the breast is formed from your own skin and fat and your tummy will be flatter.

Still lots to mull over

x

[stresshead]

Hi Elsa, i had double mastectomy and immediate diep reconstruction in Jan 2012 and the jury is still out on whether i did the right thing. My op, which should have ben 91/2 hours took 121/2 (dont know why) and the recovery wasnt pleasant. I spent a week in hospital but was still bent double for quite a while after that.You need a lot of help and support. The scar across your stomach goes from hip to hip but it does fade in time.i used bio oil.I do have a ridge though so the tummy tuck hasnt resulted in completely flat stomach, but dont see it as a negative. i still have a lot of pain on the 'cancer' side (i opted to have bi lateral mastectomy to stop spread but unfortunately it came back anyway) and this side is bigger than the other but again no major issue.

I did have a fat transfer on the other side to even it out a bit and also had nipple reconstruction (dont expect a proper 'sticky out' result) and tattooing.

This has come across as really negative but didnt mean it to. I was very glad i had the immediate reconstruction rather than cope with a completely flat chest and two scars, although i know many people are completely happy with this.

My surgeons and the breast care nurses all say what a fantastic result i've got which is good because they see lots, whereas we dont.

The only thing i do sometimes think about is whether i would have had so much pain and discomfort if i'd have had implants but on the whole i think they have their own issues and i am happier knowing its my own tissue in my body. At the end of the day the decision has to be yours ..its not an easy one but armed with different opinions i'm sure you'll make the right decision. The surgeons really are fantastic in what they do and i think we are lucky to be given the benefit of their skills, whichever method you choose. Good luck.x

[drdspg]

Hi, I had bilateral DIEPs done 10 days ago. I had the original mastectomies in May 2012. The op is certainly challenging but copable with. Although very early days, things have gone well so far and I don't regret having gone for it. My choice was based on wanting a reconstruction that would use my own tissue and so look more natural. One keeps hearing DIEP described as " the gold standard" and my surgeons are very skilled in this procedure. I would have reconsidered my choice if they weren't..
As my surgeons and anaesthetist said repeatedly pre op, this is a major op that does have risks of complications from both the surgery and very long anaesthetic. At the end of the day, at this point in time, I do feel I made the right choice. All the best in coming to your decision and for whatever surgery you go for.

[Elsa]

Hi Swirly

Thanks for your comments.  I'm not in arush to get anything done; I've got an appointment with the breast surgeon in a few weeks to talk about reconstruction.  The team I'm with do the LD recon and implants but I would need to see a plastic surgeon in Stoke or Birmingham if I wanted the DIEP.  I've got enough skin and fat for this!!  In fact; I've got to reduce my BMI to 33 or below so need to lose some weight first; about a stone will do it. x

[Swirly]

Hi Elsa, its great to hear your well through you treatment. Have you had a consultation with the plastic surgeon? They will look at you objectively and advise you where you have enough skin etc to make the best reconstruction. I haven't had a DIEP as there wasn't enough flesh, if I'd have known I'd have eaten more! I have known others who have had this and they are all happy with the results, looks and feels natural, they have lost some tummy muscle strength, but the tummy tuck aspect was a real bonus. If you are happy the way you are, don't feel you have to have reconstruction and don't feel as though you have to decide right there and then.

[Elsa]

At my annual check up the Dr suggested I go for reconstruction and gave me a booklet to read about it.  I have got another appointment later this month to discuss it further. Having read the booklet I feel that the DIEP recon sounds the best but I would be grateful if anyone who's had this done could let me know their experiences of it whether they be positive or negative and is the end result worth it?