Diep success and failure!!!

Hi Folks,
Three weeks ago I had surgery for Diep reconstruction - on the site of my previous mastectomy and on my “good” side I had opted for a risk reducing prophalatic mastectomy (skin sparing) with Diep reconstruction.

After some 17hrs surgery the Diep on my original mastectomy side worked and is totally amazing in look and feel - no problems to date at all
Sadly the Diep on the “good” side failed!!! I am not convinced as lots of people say on here this is unusual! Although one side did work!
I have an expander in at the moment in the failed side and had nothing but a burning hot sensation in that breast (obviously to do with the muscle stretching) and awful pain in my shoulder blade (which I am told by the hospital is to do with the nerves and muscles due to the length of op and positions I was in).
I dont know how I feel at the moment, shocked, worried as the expander and temp implant does not seem to suit me (feel pain and not comfortable most of the time) My breathing has been different since the op too but not major!
I did not op for the Diep lightly, it was recommended to me from day one due to my allergies…
The side that has taken is totally amazing I cry when I look at it…Im speechless, the other side well I think its fair to say we have not yet accepted eachother ha ha!
I have read about fat transfers and flaps etc on the society of Plastic Surgeons website…Although the surgeon is keen that I have an implant, I find this strange after the surgeons recommending the diep!
I met with the surgeon during my groggy days in hospital and hope we will meet tommorrow. He was devistated the good side failed, if anything its the side of the cancer and radiotherapy that fails!
What realistically are my options? dont think another 17hr op is for me, I was scared before and dont want to temp fate again, nor is it fair on my children!
I really cannot be doing with pain either…tummy has been so tight and initially had panic attacks…thats said folks it is do able…and the results are truly truly amazing. In no time you go from bending right over to upright and moving…
I really dont think an implant is for me…but I wanted the prophalatic mastectomy and now wishing that old saying Dont fix whats not broken, I’d listened to…that said dispite the pathology of the removed breast was all good and no signs of cancer, I would have always had the doubt in my mind so I would do the same again…as we all know it can return anywhere anyway!
What are my options and if anyone has been in a similair situation what have your experiences of your type of surgery been like? Life after expander, other types of possible surgery? How long is the expander normally in for?

Hope I make sense, I think its weird how my tummy and my taken side have worked and no problems but the so called good side has given me hell since the op!

Thanks for listening
xx

Hi Jo68 I cant really give you any advice, I had LD flap that failed and then diep this year. I think our bodies are all different and so we have different results and we all do what we think is for the best. I think you need to talk to someone about your choices either your consultant, breast nurses or ask to find ladies in your area who have gone through the same/similar I hope you find someone who can help I am sure there are ladies on this site who have gone through similar L xx

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Hi Jo
I’m so sorry you have had such a rubbish time with your DIEP op. I too had a prophylactic mastectomy as well as my affected side and had temp implants put in. My ‘good’ side failed too and I had to have it removed and I am now flat on the good side. The affected side is hanging in there and like yours, my surgeon was gutted.

I don’t really have any advice on the types of ops or anything and agree with tinfish, you need to talk through your options with the professionals. I hope you have an understanding team looking after you. I will be undergoing a DIEP next year sometime and am dreading the same thing happening especially as the ‘good’ side failed with my impant.

Have you got family history of BC? I am waiting for my genetics test results but I wanted my bilat mx just done and dusted rather than wait for genetics results.

It’s so hard and I am sending you a big hug.

Viv xxx

Mods…I have just read this thread and on the first post adverts keep popping up for Ipad…are we supposed to report this?..the adverts are popping up on the words in purple that are underlined…are people hijacking this site…they should be ashamed of themselves!!!

Thanks for reporting this apple street we will look into it

Lucy

thank you lucy…

Hi Jo, have not been on this site for years so hope I can do it ok! You are not alone in your turmoil. I had a bilateral mastectomy in 2005. was pleased I made decision to have good side removed aswell as I didn’t want to be left with one boob. Excellent job done on that operation. However after 2 years of being flat chested and physically very comfortable I decided to go for LD construction. The good side was excellent and I had expander implant aswell. No problems with that at all However the other side failed and I was absolutely gutted and put through quite a trauma… I then went on to have a tram flap to reconstruct the failed side. It was a success but later got infection and was readmitted. All settled down but am so unhappy about having my flat stomach totally rearranged and and now suffer from very painful ribs when I’ve been in bed all night and lots of other minor complaints. I have trouble with turning over, round etc first thing in the morning until everything loosens up… I was faced with either being left with one boob or having a very good reconstruction removed to obtain symmetery after the failure. I dont know if it is possible to talk personally to anybody on here via email but I would welcome the chance to talk to someone who has gone through a similar experience.
If I had known what was going to happen to both my body and my marriage I would have never gone for the reconstruction but I had seen so many people very happy with theirs I was hoping I would be the same. If the LD had worked on both sides it would have been an amazing outcome but sadly that’s not how it worked out. " We live and learn". However the positive side of all the surgery is that I can wear more clothes and even in a bikini no one would know I’d had any surgery. If you would be willing to email me I would love to talk about your situation and mine in more depth. Good luck.

Hi Beryl,

Welcome back! It’s good to see those with knowledge and experience sharing it with the new users of this site, for which we thank you.

Best wishes,

Jo, Facilitator

Hi Jo, is it possible for people to email each other. I ask this question because there are some things I wouldn’t want to put on a forum but are really relevant and would be good to get off my chest. I would love to talk to someone who was or is in a similar situation.
Regards
Beryl

Hi Beryl

If you contact others by private messaging you are able to share things privately that way or you can swap email addresses via the private messages just not on the site

Best wishes

Lucy

Hi Everyone
This is my first comment ever on a forum!! Pretty scary and big step for me!
Been diagnosed in September- small lump, but shadows too, so mastectomy is the only choice! I too have made the choice to have the ‘good’ side removed- like Beryl. On wednesday I have to decide what type of reconstruction I want ready for my op on 13th November. I’m scared witless, I have 4 young children and am obviously concerned about making the right decision. The surgeon is pushing me towards Stratice, the nurse towards LD and I have no real idea what to do. I know we are all different and what works for one person might not for another etc. but would really appreciate any comments. Also my surgeon said he wouldn’t be able to do the TRAM or DIEP as I didn’t have enough stomach fat- is that right???
Help! Comments please!
D

Hi Dorothybeth,
it may be worth asking for a referral to another plastic surgeon for a second opinion. It could well be the case that s/he will make the same recommendation, but at least you may feel happier. Such a major decision that it’s worth taking your time and exploring your options. I am in a similar position to you, but my situation is complicated by the fact that this is my second cancer and I have already had radiotherapy to the ‘bad’ breast and surgery to both.
Just noticed you need to have made your decision by Wednesday. Another option would be to ring the BCC and see if you can talk things through with one of the nurses. They may be able to help you go through the pros and cons so you can reach a decision that you feel you can live with.
Good luck,
Margaret

Hi Dorothybeth- first time for me on forum as well! had mastectomy with immediate LD reconstruction in February followed by chemo which finished in July- fortunately for me rad not needed - started tamoxifen 6 weeks ago. Had to have small implant with LD as not enough fat on my back. Post surgery was ok but had to deal with back wound as well as reconstruction wound and also the emotional side of it all- couldnt have managed without family support i had. Will say that you need to do exercises as soon as you can as does help recovery although I wasnt impressed when was given them to do!!!. Hope all goes well for you whatever you decide.

Thanks Margaret
Really appreciate your comments. I have spoken to one of BCC volunteers tonight who had LD, which was helpful. There seem to be pros and cons for each I almost just want to put them in a hat and pick one out!!
I have a friend who has had expander then silicone and she is really happy, so I’m tempted to go with that because of everything she has said!
I feel a head spin coming on!!!
D

Hi Ladies,
Sorry for not responding much earlier…my scar had opened and been feeling alittle down (bored more than anything!).
Thank you for your responses, I am still waiting to hear if I have the gene but I was told it could be 6mths and that was last March! I have found out my surgeon does not do some other types of surgery and thus really if I stay with him implant is my way forward. Its not what I want but I also dont want the long op as last time or the pain! I have concerns if cancer comes in the lung or on the chest wall they will not be able to pick it up on the scans? (I am told I will have clinic appts but no mamograms)
My other concern is that if they use the fat (TUG) from Thigh that not only will I have a huge scar there but I am quite hairy on the inner thigh and regularly wax and the hair does not stop growing when the skin and fat moved! I dont fancy an obvious waxing session on the boob thank you!
The op with the muscle from shoulder needs an implant anyway so perhaps the implant is the way forward for me.
I have met so many people who have had their expander filled far more regularly than those on the nhs (thus meaning they are ready for the implant sooner!)
I wish there was a set of standards that they followed all over the country for how they go about things…it will have taken two months to get my first fill in nov, they could have done weekly smaller amounts to expand instead of one large uncomfortable hit!!!
Beryl, please contact me Im happy to chat to you. I would say your in a really good position in having the diep as a second option, By far it has been the most amazing look and yes the tummy is flatter but if you have a “Tyre” above your tummy button it will be pulled down slightly but you still have it! The pain and tightness is do able. Results amazing I guess I am just devistated I cannot have the same for my good side…they always say dont mend whats not broken and I guess I am still trying to deal with that…
I’ve got to say I try to only use this site now and again, as sometimes I feel it can make your mind work overtime!
Anyway, thank you so far and hopefully anyone who has had a diff op might share there experiences with us.

Moderator Lucy, sorry only just seen your email re:spam in my text. No idea how it got there as I have a really good security on computer! Just tried to edit it but said someone else has already done this, thank you
Speak soon folks
x