the breast cancer
support charity

Member
zibzab
Posts: 89
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

I red this discussion. I can not keep quiet anymore. I would like to tell my opinion and expierence.Maybe for somebody this will help to decide.I had been breast cancer - stage 2b. My breast surgeron sed that I can to decide to do mastectomy or to do just lumpectomy. My hasband also is breast surgeron - after I discuss this with him. He sed - no lupmectomy! I thought - all right he knows what do. After mastectomy - when I started to think about reconstruction - he did not allow to do.What I wanted to tell - never ask for doctor what you will do if something like that will happen to your wife. At this moment doctor never can to be objective. And what else - my husband put on table lots of different reserches. I was very influenced and therefore have waived (refused) the reconstruction at least for now.
Sorry for my language - english is my third language.

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Hi all

Me again!

I had a meeting with my breast surgeon yesterday, regarding my letter of complaint.
He was of the opinion that skin thinning is a very common occurance with tissue expander recon. He said i was unlucky that mine had thinned too much!
Now he is talking about lipofill as a possibility? He referred me to a ps at another hospital back in April , and this man said i would need LD flap as my skin is too thin to do grafting for the nipple recon (which is what i initially went to see him for!)
My original bs does not see what the big deal is and basically has said that these things happen! But also says that i do not necesarily need the LD flap .

So my next step is to have another conversation with the ps at the new hospital and see what he makes of the original bs's comments.

Please use plain text.
Member
Nottsgal
Posts: 507
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

No, you don't deserve this on top of BC.

I hope all goes well for you.

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Thanks Nottsgal.

I have already been put in touch with a plastic surgeon, who can hopefully put things right for me.

I also have a set of very 'tight' questions for him (no room to escape and be evasive!)

Just wish i didn't have to go through this.

Please use plain text.
Member
Nottsgal
Posts: 507
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Good luck with your meeting with the surgeon Naz. If he discusses the complaint fairly, fine, ask him to recommend what can be done to put it right - and the name of a good surgeon. But if he starts wittering about the risks were explained to you etc, then ask him 'what would you think if someone had done this to your wife?' I've started taking this tack with my (female oncologist) who is, to put it politely, detached. Now I say, 'if it was you, what would you do?' etc. You're not just part of a caseload, you are a person with valid feelings.

Sorry I can't make it all better but I really hope there is a plastic surgeon out there who can.

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Got a meeting with the surgeon on Monday to discuss my complaint! STRESSED!

Please use plain text.
J01
Member
J01
Posts: 539
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Naz gonna PM you

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Thanks Jane

Had a down in the dumps week this week. Think i underestimated how much it has affected me. God i hated the 'breast' without the nipple, now i have to face the fact that i am not going to even get a nipple unless they operate on me all over again...how can this be??????????

It is total rubbish! :-(

Please use plain text.
Member
Jane
Posts: 361
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Hi Naz

It's totally rubbish, isn't it! And to feel so unhappy is the pits. Perhaps you will get some response re the complaint but I would not hold my breath if I was you. I feel your pain and you should not have to be in this position, recon gone wrong is almost as bad as losing the breast, in some ways worse cos the hope of a good outcome starts to feel less likely. But it's happened and honey, you need to really focus your energy and push for the best recon option available to you.

Sending love

Jane x

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Me again!

I have written and sent my letter of complaint to the hospital. It has been received and it will now be forwarded to the relevant department.

Just waiting for the paper work from the house insurance now, as we have legal cover. There may or may not be a case, who knows until the solicitor has had all the info.!

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

thanks Jo, but i do not find the helpline useful.
they do not seem to be able to empathise with how i feel right now.
but thanks anyway.

Naz

Please use plain text.
Moderator
Jo_BCC
Posts: 6,031
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Hi Naz,

Sorry to hear you are feeling like this, have you given the helpline here a ring? If not, give them a call when they're open again on Tuesday and have a chat about your situation, it may help.

Take care,
Jo, Facilitator

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Feeling totally fed up at the moment!
Just feel that NO-ONE cares about how i feel regarding this mess of a recon that i have had.
What is it with people, they seem to have had an empathy by-pass!

Going to draft my letter of complaint to the hospital next week...phase one!

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Hi Jane

You are so right, i do need to focus this year, and i will definitely be doing my research, as i am not consenting to anything that i have little knowledge about.

I think that most people other than my immediate family are already tired of me and what has happened to be honest. No-one really undertands what it is to go through this, how could they, unless they have experienced it themselves, but i am quite shocked yet again, at the lack of empathy people have at the moment, they could not give a damm! Few people have taken the trouble to ask how i am or how i am feeling, it disgusts me to be honest.

You are not to blame for all that has happened Jane, people have let you down, people who should have been able to give you a good result!

xxxxx

Please use plain text.
Member
Jane
Posts: 361
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Hi Naz and everyone

Naz, think you are wise to focus on the most important thing and work towards getting that sorted first. I hope the PS gives you a result which at least you can live with or even better feel good about! word of caution though - try to do some research on the PS as there is a variation of skills even among experienced PS.And use that energy to advocate for a good result - pour it into being assertive! I find that families can tire a bit of all the surgery, drugs, campaigns when they drag on and support sometimes vanishes so you need to focus honey.

Welshgirl - you are a sweetie! But don't worry, I don't feel bad when other people get a good result, I am genuinely thrilled for them. When I meet someone who says she is pleased with the result I am delighted as let's hope this becomes reality for more women after mx. I am not so bad now - faith in doctors and medical types still nil but this recon is still for me better than the alternative of nothing there, though I respect everyone who feels they don't want or need recon. I get by, reminding myself that I agreed to all this, I signed that consent form so I only have myself to blame.

Love

Jane x

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Thanks Welshgirl, I so hope it will all be sorted out too, as mentally, it is very draining to deal with afer everything that has happened over the last 18 months or so.

I will keep you posted...

Thanks once again.

xxx

Please use plain text.
Member
Welsh_girl
Posts: 871
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Dear Jane and Naz,
I hope your stories can provide some 'comfort' to both of you as this whole nightmare you're going through must be so isolating!
Knowing other women can have a positive experience of reconstruction must destroy you both!!!
You don't want to feel so angry but I can well understand why you must want to ask, 'Why me?'

I really do hope you find the energy to continue this fight either through legal or medical routes (or both!) You both deserve to have a positive outcome from this nightmare. I hope your medical team can offer you realistic support and counselling.

Thinking of you both, Welsh girl xx

Please use plain text.
NAZ
Member
NAZ
Posts: 835
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Thankyou everyone for your replies.

Zibzab,sorry if i came across a bit stroppy in my last post, i guess i am very bitter and angry at the moment.

Cheshire cheese, yes i am looking at the household insurance and legal cover, i think we are covered, which is something isn't it...

Thanks Welshgirl for your supportive comment, they do mean alot at a time like this i can tell you! xx

Jane, it's a nightmare ! I cannot believe that this has happened to me to be honest. I went through two general anaesthetics last year for nothing! Not to mention the emotional trauma and physical pain recovering from the ops.
The sheer thought of even having blood taken,turns my insides, as my veins are so fine and feeble now!

I am also very sorry to hear that you have had a bad time of it too...it is indeed very draining on the mind and body.
Having a good cosmetic result is very important to me, as i struggle to deal with the loss of breast, it has really affected the way i feel about my body now.
It is hard Jane and i feel for you, i really do..xx

I need to gather energy to sort this now,so here goes!

xxx

Please use plain text.
Member
Jane
Posts: 361
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

hi Naz

I am so sorry to hear about this after all you have been through. It's appalling and I am so sad to hear of yet another woman for whom reconstruction has gone wrong. I too have had this happen, short story: mx and LD with implant recon Autumn 2008, muscle would not settle so had twitching, jumping and painful implant. Eventually, managed to get referred for revision in Feb 10, despite the best efforts of the BCN and the Surgeon who did it to encourage me to live with it, sent me to a pschologist who completely missed the point.The PS was able to sever nerves to make it settle - cosmetically it is a big disappointment as the repeated surgeries (had WLE as well) have left the skin in poor condition. If I knew what I know now I would never have agreed to mx.

You sound like the recon is really important for you - I think you probably need to focus all your energy on getting the right kind of recon for you - maybe put your energy into exploring what that might be. with regards to a legal case, solicitors etc - my friend has had a case ongoing for years as she was severely disabled by a botched recon and I suspect Zigzab is trying to say do not underestimate the emotional turmoil of a legal case.

Finally, nearly three years on the recon started in 2008 is still not finished although the end is finally in sight now. The fact it takes so long in itself takes a toll, I am sick of feeling half finished so I have just called it a day although it is not very breast like (dents,odd shape, scars etc)despite the PS's best efforts. I feel like those people in DIY programmes who run out of energy to finish their houses so they live with falling down walls - would never have thought I could be like this! I guess what I am saying is you only have so much energy and you need to figure what will give you most reward - sounds like getting the best cosmetic job needs to be your priority.

Take Care and Good Luck

Jane x

Please use plain text.
Member
CheshireCheese
Posts: 928
Registered: ‎01-05-2012

Re: Reconstruction all gone wrong!

Following on from what Tors said earlier about getting legal advice from a solicitor another option might be to do it through your house insurance legal cover. Most house insurance policies include it and it isn't limited to legal matters related to the house - so check your policy, assuming you've got one!

Please use plain text.