Reconstruction not what I was told to expect.

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Jess33
Jess33 Member Posts: 12
I’m near the end after a double mastectomy 2 and a half years ago with failed reconstruction. 10 operations later and I have died flap reconstruction 4 or 5 rounds of fat grafting (I’ve lost count), two lots of silicon implants and I don’t look normal at all. My upper chest is lumpy and concave and looks a bit like I’ve had a very bad, uneven boob job. 

I’m really struggling. I’m very badly scared from all the skin and tissue necrosis and lost so much skin on the side that had no DCIS ( got both done as knew I wouldn’t cope if I didn’t look ok), that they had to leave the skin paddle (skin from my stomach) so even more scares.

on top of that the mesh has failed twice so my stomach is very bloated and often painful. 

My legs are covered in cellulite and uneven with hollowed out bits. I don’t recognise my body and I feel hideous. My surgeon keeps saying how good I look considering where I’ve come from. I know I should be grateful to be alive. I know I should be grateful it could have been a lot worse. I feel very alone. I’ve not found anyone who’s gone through something like this. Are my expectations unrealistic? My appearance was my armour and now it’s gone. This started when I was 45, just before my daughter’s 7th birthday. She keeps asking if she will have to have this done. Reality is it’s more aggressive and earlier every generation in my family and seems to affect almost all the women. I can’t even show her it will be ok because I’m not physically or mentally ok. Sorry for the long ramble, just need support.

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  • Julez1958
    Julez1958 Member Posts: 1,152
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    @Jess33 I am so sorry to hear this.
    Where are you located? You can add this to your profile and ladies can give you more targeted advice.
    I am in a Sydney and had my DIEP surgery just over 2 years ago.
    I was very anxious about the whole  thing especially as it was not “ essential” surgery.
    It all worked out ok but my surgeon did advise me that all surgery carries risks and that things do sometimes go wrong despite the best of care and attention.
    It is a big complex surgery that’s for sure.
    Seeing a psychologist specialising in cancer related distress would be important and if you haven’t listened to the Charlotte Tottman podcasts on here “ What they don’t tell you until they do” are very helpful / she is a psychologist specialzing in cancer related distress who got breast cancer herself.
    Also it might be worth getting a second opinion from another plastic surgeon who specialises in DIEP display surgery - I can recommend the one who did mine but that would only work if you are in Sydney.
    Take care and remember you are more than the sum total of your  visible body parts - my hubby said when I was told I needed a mastectomy “ well it’s not like they are essential organs”.
    Thats not to minimize the emotional distress you are going through but life goes on after this diagnosis and we all have to find a way to get through it as best we can.
    🌺
  • Cath62
    Cath62 Member Posts: 1,312
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    I sorry you have had this experience.  It sounds like you have had a hard time. Whether to from here. Are you expectations ok or not, I guess that's not something I can comment on as we can't tell here but you do say your surgeon says you look great.

    Have you seen a counsellor? Maybe they can help work if your expectations are right and help you process all tthis. I saw a counsellor with my treatment and I still see a counsellor as I am metastatic. I find them really helpful to manage processing what is happening to me.

    You said every generation the cancer is earlier. Have you had genetic testing for the brca gene? It would be very hard to answer your daughters questions about this but maybe the test would help. 

    Regarding cellulite, I don't think many people male or female over 40 font have cellulite. Unfortunately as we age our bodies change dramatically. I am now in my 60s and there many things not as they were. I remember my mother saying to me that aging is great fun because it isn't kind to the body but it's a privilege. 
  • Jess33
    Jess33 Member Posts: 12
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    My mother and some aunts and second cousins have had the gene testing done. No braca but definitely genetic. I was told to get it done urgently 2 and a half years ago… still haven’t. Was too overwhelmed and the idea of passing this onto my daughter is too awful. My partner doesn’t work so I can’t afford more time off if I did need a hysterectomy and I’m not sure I could cope emotionally with more trauma. 

    While I place a lot of importance on my appearance it was also on being healthy and fit. I now can’t do much gardening, open a jar or hug anyone properly… so many things are limited or not possible now. I wasn’t warned or prepared for this. 

    My partner is supportive but also brutally honest at times. Driving me home after the first lot of implants I was still a bit drugged and said something about being able to finally wear a dress or normal clothes. His response was “maybe not yet but the surgeon isn’t finished yet”.

    The surgeon is almost finish and I feel incomplete unattractive and sick to death of wearing high neck clothes. I miss the beach. Mostly I miss feeling normal and not scared of what people can see. I’ve had some pretty awful responses from people men and woman when I bend over or my scared stomach shows. It’s painful. 
  • Daina-BCNA
    Daina-BCNA Administrator, Staff, Member, Moderator Posts: 33
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    Hi @Jess33

    Looks like some of the members have already jumped in to share their experience and some suggestions. I hope you can find some support as it sounds like a really emotional and stressful time both physically and emotionally for you. 

    There is an article I wanted to flag that is in BCNA's My Journey tool Changes to the way your body looks and feels - you may find it useful, and I think @Julez1958 mentioned it, but Dr Charlotte Tottman's podcast, with a specifically focus on body image issues may be worth a listen - although her experience is of staying flat, it is a really insightful into how she was and still is feeling, which you can find it here.
  • Afraser
    Afraser Member Posts: 4,388
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    This is hard work. And it’s hard work at a time when your expectations were that things would be a bit easier, a bit more ‘normal’ . Feeling that you should be grateful to be alive simply reinforces that you’re not feeling all that grateful. At least not yet. Like @Cath62, I would recommend a good counsellor - someone accustomed to cancer patients but also able to encompass all of you. Talking to an informed, empathetic and insightful stranger can be immensely therapeutic. Your body has been through the mill but so has your mind and your feelings and some professional help in that quarter may be overdue. Loved ones may be supportive but they are not the right mix for the task in hand - to sort out your feelings, hear you, hear you say things you would never want to burden loved ones with (and which may be very temporary) and find your balance and inner strength again. Best wishes.