Reconstruction - I hate it!

[Ladybird_dance]

Poor you!
So far I haven't let them touch me with a knife. How does your back feel after taking away part of your Latissimus Dorsi? Can you actually use your arm on that side?
I wish you the best with this ongoing nightmare.

[NAZ]

HI Grumpy
Thanks for sharing your experience with me (and the other ladies )
I am pleased to hear that you have now accepted your body for what it is and that all the fighting has paid off.
The feelings which i experience daily, are a mixture of anger, sadness and frustration.
I have not accpepted the new me, because i am not finished and because i have not come to terms with, as you say, being mutilated (and badly at that!) in order to save my life. I stuggle with this constantly and am also seeking some help from a counsellor.

It is a long hard road to recovery for some and for many, very exhausting.

Naz xx

[grumpy]

Reading these comments has struck a chord with me.
My surgery was WLE on both sides followed by rads, which left me with Droopy and Perky, and after a 2 year battle I've just been evened up. So very minor surgery.....
The emotions have been similar to yours, sheer anger and profound distress that I had to allow someone to mutilate mybody inorder to keep me alive, and yes other people don't get it, it is such a personal thing.....
Anyhow, keep fighting for what you need, it is your entitlement!
Also I took myself off for some counselling and that was VERY helpful - I took back control and kept making a fuss until I got what I
needed. I know my bobos will always a bit lopsided but it's slight, and I can actually look at my naked boobs without weeping now.
And of course we have to do this fighting when we are so vulnerable and it is exhausting.
very best wishes to you all
grumpy

[NAZ]

Hi Sarah
Thanks so much for sharing your story - you sound really positive about your new recon which is great..:-)
I do think plastic surgeons vary considerably..My original surgeon was not even a plastic surgeon and made such a mess, yet he did not think he had done anything wrong. As a consequence i am pursuing a claim of clinical negligence towards the trust. which is hanging in the balance at the moment!
For me now, the scarring is the issue. My new surgeon had to work hard to repair the damage, but in the process has left some bad scarring. That in itself is a reminder of the stress i have had to endure during the process and in turn has delayed my recovery.
In time will have scar revision surgery to make things better for me..

Annie, i have had the nipple done and just the tatoo left to do now. I hope it will look better over time.
My OH is also 'mourning' lost breast i think - (but has not actually said as much, i just know, because he does not go near recon at all)
I will be honest and say i find it hard. I know there are many women out there who feel whole and feminine again after recon and that is great for them. But for me the process has been long, painful and pyschologically damaging.
I hope to learn to accept soon, but not there just yet.
Naz xxx

[Sarah1967]

Hi,
I often read the posts on here but don't often reply to them. I really felt I should reply to this thread as it is a subject very real to me also. I'll give a bit of history.............
I had my original right side MX in August '09 but couldn't have recon at the time due to where I lived (they could only offer delayed recon). In April '11 I had recon on the right side and a MX and immideate recon on the left side. I had bilateral LD flaps and small implants on both sides.
When I first saw the recon I hated it! To my friends and family I couldn't even admit how I felt. I'd been so looking forward to having the op that I felt like I was somehow letting them down by moaning about it. One of the reasons I had the 'good' left side off was not only to decrease my risk of a new breast cancer, but also to help with symetry. The problem was, they weren't even the same! My chest just lookled so odd.
I went back to the PS for check ups, and at my last one with him a year ago (I lived in Wales at the time), I broached the subject of trying to make them look more even by using lipofilling, which I had read he did. He was very dismissive and basically persuaded me to not bother. I left his surgery feeling so low. I didn't know how I was going to accept my chest as it was. The silly thing was, I felt better in lowish cut tops when I'd had my original MX because the MX bra hid my flat side and the upper part of my chest still looked like it always had. After the bilat MX I ended up with an uneven upper chest area. Friends and family would try to tell me that it looked fine but I could tell easily that the left upper side was much more concave than the right. I really felt that I wouldn't feel confident wearing nice sexy tops or bikini tops for that matter. I felt that the recon - for me - was a waste of time becuse the reason for having it done was to be able to wear pretty much anything I liked.
Anyway - fast forward to the end of last year.......
I moved to Cornwall last year and decided that I would get another opinion from the PS down here. OMG what a difference in attutude! They could see straight away why I was unhappy and offered me lipofilling straight away. I had the proceedure a week ago, and so far, the results look SO much better. I know I may need another 'go' because of some of the fat my get reobsorbed by my body, but it was a fairly easy op, and I would do it again in order to get the look I've always wanted.
Finally, I feel that my chest can look 'normal' again. I know they're not real boobs, but I have hope that they will be acceptable to me and that I will finally be able to move on with my life. I didn't reaslise how much the original recon was holding me back.
I reaslise that everyone is different and that for some, having reconstructed breasts is still difficult to accept but I do think that if you can get the best cosmetic look you can (and the right one for you depending of what is important to you), then it makes it that much easier to accept the change in your body and your life.
After feeling like I just wanted my reconstructed boobs taken off, I can honestly say that for the first time I can see light at the end of the tunnel. I now actually feel like I want to keep them and with my PS's help, I will hopefully get to the place I want to be
Much love
Sarah xxxx

[Annie22]

Naz, Is it just the tattooing left to do, or are you having the nipple made? If it is having the nipple made, given what you're feeling about your new breast, I'd be concerned that you might hate the nipple too. You can have it done at any time, so there's no rush. Also, don't forget that you can get a second opinion about the 'new' breast if you think it can have been done better - and it would be better to do this before you go ahead with the nipple and tattooing.
I do understand how you feel (my husband wasn't one of those who say that they love me whatever I look like - he told me that he was 'mourning' the loss of my breast - nice!) - but if it is important to you, you need to insist on getting the best looking breast you can.
Annie

[NAZ]

Went to see ps today. He seems pleased with what has been achieved so far..
Next step is tatooing of the nipple area..
He has reminded me that the final outcome has been jeopardised by the previous surgeons inability to make the correct mastectomy incisions and by taking too much skin away! I cannot believe i was in the hands of such an incompetent surgeon!

[NAZ]

Hi Happy shopper
Thanks for your message..
I am sorry to hear you have also had a rough time of things in the past, but i truly know what you mean about the alien rocks attached to the chest!
I am at war with my body right now and it is not a battle which i am winning to be honest. So i know i need some help in accepting the new look. This is hard as it has to come from within me and is taking so long.

You are so right Happy shopper, there does need to be more support for women who are facing a mx. For me it was very daunting and terribly distressing. The recon is distrss on another level and i am torn between being grateful for life and hating the new me!

I hope to find peace within myself very soon xxx

[happyshopper]

Dear Naz and Beryl,
Reading your posts was exactly the way I felt when I had my bilateral recon 6 years ago. I went into hospital anxious though optimistic about how nice it will be to have breasts again, but when I woke up, the overwhelming distress that I felt about my recon hit me like a ten ton truck.
like yourselves, I absolutely hated it. I had bilateral expanders in and I just wanted them removed. They were alien rocks stuck to my chest, nothing like a breast at all. My first check-up appt i was in floods of tears (infact I seemed to be constantly in tears), asked for them to be removed, much to the shock of the PS. No-one appeared to understand how I felt- noone - it was almost like an out of body experience and unfortunately those feelings never went away.
To round it off I had a PE (blood clot on lung) post-op, and a nice dose of cellulitis around one of the implants, meaning that I had to go back into hospital again. The infection then triggered off truncal lymphodema - I just didn't think it could get any worse and the regret of having that op was massive. I felt bad because others seemed so happy with their recon and I didn't.
I wasn't able to have them removed for at least a year due to the PE, and I underwent many counselling sessions in an attempt to accept the recon. Although my distress did reduce, it never went away and I remained determined to have it removed.
I did eventually have them removed in 2008, and went back to being flat chested with prostheses.
I didn't choose to have breast cancer, but I did get it, and as a result I lost my breasts in order to survive. I strongly feel that their should be more support for women undergoing mx tohelp them to accept their change of body image, instead of the solution to the problem being recon. In many cases recon is ideal and acceptable for many women, and the thought of remaining breast- free unthinkable for many.
I really do understand and hope that you both find an answer - just don't rush into doing anything and remember that you are recovering from major surgery - effects of anaesthetic etc. which can have a dramatic effect on your emotions. The dust needs to settle so you can make informed and rational decisions and I wish you a speedy and peaceful recovery. XXXXX

[tracyld]

Hiya Naz, It is so good to see you supporting another lady on here. Beryl I wish I could say something profound that would make you feel better but I cant . Only You can make yourself feel better. It is not easy , it is bloody hard work but to be honest we have no choice. We are alive and must make the most of every day.
Sending you both my love and support . Tracy xxx

[NAZ]

Hi Beryl

I have sent you a private message. Please feel free to rant away at me. As i have explained to you in my message, i get how you feel totally xxx

[Beryl]

Hi Naz, I don't come on hear vey often but am so glad I read your post today. Thank goodness someone knows how I feel !!!!! I can fully understand how you feel. It's 5 years since I had bilateral reconstruction and I would give anything to have my flat chest back. I could cope with the bilateral mastectomy and I should have been glad I'd got rid if cancer but I suppose I've paid a very heavy price for just wanting a little bit more vanity. My marriage has suffered, my children have suffered and I have so much discomfort and pain aswell as I feel I look a freak. My flat scared chest looked better than it does now. Like you I HATE IT !!!!!!!
im a strong person but inside I keep locked away a whole load of emotions which I would love to let out but I think I would have a kind of breakdown if I did let it all out. NOBODY can understand unless they feel the same way. Aswell as going through all this I've had a lot of other personal problems to deal with and unfortunately husband says its all my own fault for having reconstruction in first place!!!!!!! So I also know what you mean about the feelings of ANGER!!!!! Hope you have a better partner than me!!
i hope time is a great healer for you and I hope things do settle down.. Please feel free to private message. i would gladly listen to you ranting!!!! I might even do the same.
kindest regards
Beryl x

[NAZ]

I have taken some steps to get some support..
Phoned the Macmillan information and support centre and the lady there was lovely..
She advised me on what is available at my local hospice as well as at the hospital..
I am also receiving some support from a lovely counsellor attached to the organisation i work for whichis great!
Feeling much better already 🙂

[bellakate]

Hi Capital
I had the LD flap 2years ago and then 5 weeks ago. I kept a journal on how I felt the first time I had the op. This was good as I can look back and see how I felt then and the rest of the months. It realy does take time to feel like a breast, I would say up to a year for it all to take shape and fall in to position. My 2 year boob feels very good. Keep doing excerise and moisturise it daily and like me you will feel very good about your boob. I use the Genie Bra for comfort most times but can wear any bra comfortably

[NAZ]

Hi Karen
Thanks for your reply.
Yes so many ladies do say that it all takes time to adjust to the new breast, for me it seems to be taking forever!
I am so grieving for the old me, my old body and i just HATE the recon with a passion. However i know if it wasn't there i would feel even worse..
To me this is not a breast and does not even come close. that is just how if feel about it right now

Onwards and upwards as they say!

[karenp]

Hi NAZ
Sounds like you are having a tough time. I had a tram flap reconstruction last month and am surprised how lumpy the new breast is. I also have a lot of pain and can 't bear to wear a bra. I am praying it will get better as I have read lots of posts where they say it was the best thing they ever did.
Karen

[NAZ]

I am going to make an appointment to see my oncologist in the new year and ask her to refer me to a cancer physchologist . Hopefully once I have talked through my feelings properly I will feel better about things and be able to move on from this rubbish.
Thank you all and in particularly Tracy for you support
xxxxx

[capital]

Hi Bellakate. You said that you had an LD flap 2 years ago. I too had the op in August. Think I made the right decision on having this op. as when woken up I still had a breast all be it a different inner boob but I still had my own skin. My problem is the tightness from the back muscle. I do the exercises regularly 3 times a day, but when I laugh it feels extremely tight, also when I'm cold. Also find it difficult looking behind, especially when driving. I just wondered if you could give me any advice on this problem. I realise it's still early days. Thanks for taking the time to read my e-mail. Love Kathy xx

[tracyld]

WE UNDERSTAND !! But we cant change anything for you .That is why you need to help yourself by going to your GP and explain exactly how you feel. It is all becoming too much for you. Please get the help you need. I have been through counselling and I still take antidepressants to be in this calm place I am now. The lack of oestrogen made be very ill. Dont feel a failure or anything. Dont let people tell you to pull yourself together because without the right help you cant. If your GP does not help then ring for an app with yr BCN. Please ring tomorrow before the weekend NAZ. Lots of love Tracy xxx

[NAZ]

Bellakate i absolutely hate it!
I cannot ever imagine liking this lump of implant, muscle and tissue..
I want things back the way they were..why does no one understand..WHY???????

[bellakate]

I think it is very early days for you, I had recon and LD flap 2years ago in right breast and in the left breast 5 weeks ago. It realy does take time to settle down and feel like a breast again. I felt like you at first but it will get better in time. Its better than the cancer spreading. So be strong and give yourself time.

[NAZ]

Hi Tracy
Yes i had node clearance also..
I am trying so hard to focus on other stuff and even had a few good days until yesterday. Then wollop - i am angry and bitter again and want my breast back so much. Then i get myself wound up until i want to scream!
NO-ONE understands, NO-ONE! I want them to suffer as i feel i have and go through it to see what it is like!
I want them to know what it feels like to lose a part of them and be told to just get on with things!

[tracyld]

Hi Naz,
As the others have said it is something that in time you will get used to. My recon breast looks fine in a bra. I always wear a T Shirt bra now which has extra padding so that helps. I decided not to bother with a nipple as I knew it would not look the same so I could not be bothered. I am just pleased that I do not need to wear a prothesis. I had immediate recon with tissue expander so now I have one firm breast and one that has sagged with age. My plastic surgeon has siad I could have a breast uplift on the good side but I do not want another operation.
You say that you have no sensation. Did you have an axillary node clearance as well ? I had nerve damage in my arm and went to physio . She got me to use several diferent materials on my arm to get the nerves working again, from a very silky scarf to something very rough. Try it it sounds impossible but it does work. Try and be kind to yourself and just concentrate on something else. I know we become consumed by it all , but take each day slowly and if you dont feel any better in a few days time, visit your GP for something to keep you calm. The Tamoxifen sent me mental so I take Sertraline. I also had counselling with the Cancer Psychologist for 6 sessions which helped me to grieve for the breast I had lost.
Good luck with it all. Love Tracy xxx

[NAZ]

Thank you Lucy
I have already spoken to someone from the one to one support service..
It helped for a bit but i can't acccept the new me right now.

[Lucy_BCC]

Hi NAZ

In addition to the support you have here we have a 'One to one support' service whereby you can be put in touch with someone who may have had similar issues as you and they are here to offer to offer you further support whilst you are struggling, if you want to give the team a call please do so, here are the details:

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support

Take care

Lucy

[NAZ]

Thanks for your reply saffronseed..
I am finding it so hard..i absolutely hate the reconstruction right now..
I started off with a tissue expander recon and that was the most ugly thing i had ever set eyes on !
That failed and i moved on to the LD flap..

I know i can't have my old breast back but i am so grieving for my old body (if that makes sense)

[saffronseed]

Hi Naz sorry you are not happy with your recon - unfortunately you are not going to get your old breast back that was full of cancer and had to go - so whilst you will still mourn for it there is no going back so to speak and your new breast is the 'new you' and its difficult trying to get your head around it and it will take you time to adjust to it - I had a delayed reconstruction so in a way it was easier as I had 'nothing' at all and was totally flat on one side for about 18 months so for me having a breast was wonderful and being able to wear normal clothes again and nice bra's etc was fantastic - You are entitled to rant away and please do - it does seem so unfair that you had lost your lovely boob and now have something which has no sensation and doesn't look that good - but (and there is always a but) it is very early days for you - your breast needs to settle down and you will find it becomes rounder and more like a breast - the scars will go, you need to use cream/oil on them as soon as you are allowed to ask your team what they recommend - and lastly you need the tatoo to complete the task - once that is on I am sure you will be happier. I have seen lots of ladies 2/3 years down the line and they are happy with their look and pleased with the results but it does take time xxxx

[NAZ]

As the title says i hate it!
Had LD flap, nipple and waiting for tatooing.
I hate how it looks, i hate the fact that i have no sensation in that area at all and i hate the scarring!
I just want my old breast back, i cannot believe i have to live with this for the rest of my life!

Sorry for the rant..just had to get that out..