5 years wasted

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Lily55
Lily55 Member Posts: 3,534
edited September 2017 in Breast Reconstruction

Long story short, still not reconstructed, on waiting list for DIEP via public system but did not think I was evaluated well enough. So I went for a private consult today and guess what? A DIEP is IMPOSSIBLE for me due to prior scarring and insufficient tissue, all things I pointed out to and asked questions about during public health PS assessment......

So my ONLY options are nothing, prosthesis, or Lat Dorsi and prosthesis ALL with a further reduction on my remaining breast......NEVER EVER will I have what I wanted, NEVER EVER will I feel relatively normal again, my only choices are all things I don´t want, have never wanted or are not suitable for me for various reasons..............and I will look ridiculous if I go any smaller with my remaining breast - I honestly cannot find words for how I feel, I cried all the way home (2.5 hours drive) and am still crying now.  I struggle to find reasons to keep going as everyday is such damn hard work since BC.........

And that public health BITCH of a surgeon just added me to a waiting list no doubt hoping I would be one of those who died first......it is inhumane and my nightmare just deepened today.....she could have just looked at me as a human being and bothered to aSsess me properly 32 MONTHS AGO........and in case anyone is confused I had to fight for over two years to even get them to agree that reconstruction actually IS a right........

Sorry if this sounds self pitying but I HATE how I am, I HATE being mutilated, I HATE silicone, especially the feel of the prosthesis and now I find I will NEVER feel even remotely normal again


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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2017

    Oh Lilly. It just sucks. I'm sorry. Sending you a big hug. I'm sorry.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited July 2017

    Lily I am sorry this has happened. I know how you feel. I lost my right breast implant after 2 bouts of cellulitis and that was after suffering with expander than the reconstruction. When I lost it I said no more surgeries. I was just over it. I felt self conscious for a long time. Now I just dont care. Im over it. I pray you get the results you want. Hugs.

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  • Tara17
    Tara17 Member Posts: 386
    edited July 2017

    lily --many gentle hugs. It has to be so frustrating --this stupid disease that affects so many aspects of our sense of self . I am so sorry that you have to fight so hard for what you deserve ---i admire your tenacity, your perserverance in advocating for yourself. So many hugs your way right now . Dont say sorry , it doesn't sound self pitying, you are just venting the way you need to do right now. Be gentle with yourself

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  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2017

    THanks for replies, I just feel broken now, totally broken

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited July 2017

    Hi girls,

    My heart goes out to you Lilly but can I briefly share with you my situation in the hope that it may make you feel better .....I waited 10 years for a reconstruction, the only option available to me was a lat dorsi procedure, all I could think about at that time was getting my breast back. I had the surgery and the process of tissue expanders and fills.....20 months later I had a reoccurence just above my implant, before I knew it chemo had started and the implant remained in place! Following treatment I had 5 ultrasounds with concerning shadows coming up each time as the implant was blocking full view. I had had it by then and insisted the implant be removed, not the end of my problems it seems.....now left with chronic pain and a pretty(not!) deformed breast!

    I should NEVER have been a candidate for this surgery, I weigh 48kg and had had radiotherapy on that side in 2002 (first diagnosis) also my left breast after the recon required a lift (mastopexy) which I could not afford! I live with the regret of my surgery on a daily basis. I am very active and refuse to let this surgery spoil my life any more than it has done!

    I hope this makes you feel even the tiniest bit better!

    Love to all you amazing girls xxxx






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  • Gypsymex78
    Gypsymex78 Member Posts: 2
    edited August 2017

    I'm having my 12th surgery on Wednesday. PS is removing my left breast implant. I've had like 9 surgeries to get to implants. I'm so heart broken. My oncologist thinks I should just have them both out and be done with it. I had DDD amazing boobs before. I loved them and no matter how much I prepared I miss them so much. I feel bad for feeling bad. I hear the would you rather be dead or have no boobs? Would you rather have an infection or get the extension out? There just boobs! Today it's would you rather have more scars or have no boobs. I cracked. I'd rather not have to Fucking make decisions like this! Sorry throwing another pity party. 😖

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited August 2017

    Gypsy - I'm so sorry. These decisions are terrible, I agree. I'd rather not have to make ANY because NONE are what I want. I get it.


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  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2017

    Gypsy and Bonnie - OMG I have no words that are sufficient...........

    I have waited and pushed for recon for 5 years.......to find now that it was NEVER going to be possible to do a DIEP when no one bothered to tell me, even when they added me on a waiting list for one.....and even when I ASKED all the relevant questions and was told don´t worry......I am so sick of the inhumane attitude..........I have struggled to hold on to hope for 5 years and now I have none has actually broken me........................my spirit and soul feels broken to the core, I will never feel whole or symmetrical again.........never........never wake up feeling ok or normal enough.....never relax at the beach and so on.........it is only that my eldest dog needs me that I just about hand on if you can call sobbing every few minutes holding on............

    I dont want to eat or do anything except try and numb myself................I can only see one way out of this nightmare,


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2017

    Lily, your last comment is scaring me. Hold on, my friend. This latest news is a terrible blow to you, and the way you have been treated is such a betrayal. No wonder you are grieving in a huge way. Please know that this time of grief will pass, and you will feel better. I don't mean it will be as if everything is just fine, but that the extreme feelings you have now will soften and you will be able to find some happiness again. Please reach out to people around you and ask for support. I'm so sorry.

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited August 2017
    Hi Lily,

    Have you looked at the forum, opting for no reconstruction after mastectomy? I wore padded bras for years, no one was any the wiser, bikinis too - have u checked out how padded they are, without prosthesis seriously!!!!!

    As long as I had my mascara on and my hair was presentable - it was good enough for me!!!! I am sure you are just liovely the way you are 💛

    By the way I totally get the 'dog' love, I have 2 and wouldn't be without them, there has been many a tear shed with them privately....

    One day at a time ,,,,,,,,,,big hugs xxxxxxx
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  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2017

    I am not opting for no reconstruction though, I have wanted recon since diagnosis...............I cannot understand how anyone can be happy to be flat, it looks totally unnatural to me and a padded bra is no good when the other side is a DD cup...my sheer misery is still there but i have been deliberately distracting myself with othe things like saving animal´s lives etc......BUT whenever I get a minute to thik I feel the same total despair and just cannot envisage the rest of my life like this, it is sheer misery...I cannot relax or feel ok like this, no matter waht i do......I hated photos of women without breasts long before I was diagnosed.....sorry if that upsets some but its a Deep rooted repulsión in me that goes back before my own diagnosis ...........I don´t like feeling like this as its not feminist at all, BUT it is how I feel and to pretend otherwise is lying to myself and others........of course I am not repelled by other women but there is nothing uglier than even the neatest mastectomy scar..,

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  • Lisey
    Lisey Member Posts: 1,053
    edited August 2017

    Lily, I'm not offended at your revulsion, you haven't met me. To each their own. I dislike the look of pumped up lips, pumped up butts and pumped up boobs.

    I seriously think if you met me, you wouldn't be revolted at all, having little to no boobs looks good on my thin frame, youd probably assume im naturally flat, and i rock yoga pants and tank tops just as much as i did with huge DDs. I'm very very feminine, at least my hubby seems to think so. So again, not offended at your revulsion to the idea of flat.

    I think what Bonnie was saying, is there are women rocking being unis, even if they didn't pick it. They can offer you support, as can those of us who are flat. They can offer suggestions to help live life in the meantime.

    I hope you get the results you desire.

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  • chef127
    chef127 Member Posts: 891
    edited August 2017

    Lily55, are you out of options really? Expander? lat dorsi with an implant and a reduction? I'm sorry you waited 5 f'en years before you were told your not a candidate for your desired recon. It is inhumane and barbaric. Are you on a waiting list AGAIN?

    I had large breasts and when my BS told me a MX was my only option, the thought of my 'healthy (DDD++) breast dangling from my chest all alone, terrified me so I walked away and found a BS that was willing to do a LX knowing that a MX may save my life. I just could not do it. You did the right thing being ILC.

    When I see pics of BMX or uniMX It brings me to tears. It is truly a brave, life changing step to try to save your life. I'm not sure, if my ca came back, I would be able to handle the amputation(s). prob not, and I'm not a wimp???

    Please get in to see the PS and do whatever is possible to give you a pair of matching boobs, even B or C cups. Stop your suffering. It's been too long.

    sending you love and hugs xoxo


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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited August 2017

    Hi Ladies, I'm new to this thread...Lily, my heart breaks for how you feel. Breaks.

    I recently went in for a consultation but knew what to expect for my options (lat Dorsi). If I go this route, I can't do a few of the activities I like anymore.

    But I am a small woman with tiny breasts. I can imagine it's much more difficult for much larger breasted women. I struggle with the loss of my breast often.

    I guess I'm at a point where I'm really trying to figure out how to move forward. I am 48 and I still want to feel attractive. But I also am realizing that the true key to self love lies within and that I am more than my breast. This is so hard, but it's what I'm attempting to navigate. I think daily about the famous idea of accepting that which we cannot change. I fail daily in doing it (ie. accepting), but I know it is the only way for me. I will need to accept and feel gratitude. Does this sound like I don't empathize? Please don't read me that way. I live your pain; many of us do. It's so distressing and yesterday I broke into sobsjust driving to do errands.

    But you are so much more than your breasts. So am I. If you have no options you like and can realistically pursue (and I'm hoping you can; you've been through hell) I hope you can learn to love you in a new way. I hope that for me and for all of us. We have been thrown an awful shit storm and we need to find a way to feel joy.

    Wishing I could hug you tonight.

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  • secondchancetoo
    secondchancetoo Member Posts: 50
    edited August 2017

    I feel such empathy for the OP Lily. I cannot imagine the frustration you must feel after pinning your hopes to a reconstruction that can never happen.I can only offer compassion, as I certainly can relate to all of us women who have lost our breasts to this thief. I was small breasted for most of my youth and only morphed into a nice size that I truly loved in my middle age. It was all taken away from me, first one with a failed reconstruction effort, then the other 4 and 1/2 years later with a new primary.

    Although I have come to accept my flat chest, there isn't a morning that I wake up and don't say " oh my God, this really happened to me"....I honestly don't think it's humanly possible not to miss something that is such a large part of being female. I miss my breasts, that will never change. I have ranted at the moon over this, but the truth is harsh and evident every day. My husband is loving and accepting of this whole situation and always makes me feel desired....but still, it's a loss I cannot reconcile...only bear

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  • Bonnie7
    Bonnie7 Member Posts: 57
    edited August 2017

    My advice would be to stay well clear from Lat Dorsi surgery, fully appreciate that everyone's experience is different. I am 48kg and it was my only option.....had a recurrence a yr later and the donor site has been soooo problematic, even with the implant out.....please think about this carefully! Don't want anyone to have a similar experience to mine! 😄


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  • Icietla
    Icietla Member Posts: 1,265
    edited August 2017

    Please hang on, Lily, Please! I am so sorry about your situation.

    (((Hugs)))

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2017

    I am tearful Reading some of your replies, lat dorsi is not a realistic option for me given my back problems but i am so desperate for recon I have consulted with people about it, but at the end of the day my little voice says no, you will have more problems and I cannot go against that.....

    The only option I MIGHT have although ,any surgeons have said it is ipossible is fat transfer but I think the fat I had done already has moved to my other side.............I am just buryingmyself in not eating, driking lots of wine and taking lots of cannabis oil, I have stopped all my medication for everything wrong with me and just want to be left alone.....

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2017

    Lily, please reach out to someone where you live, any medical caregiver or pastor or mental health provider like a therapist or social worker, and tell them you need some help with this trauma and depression. Don't isolate yourself. Please take care of yourself. Let us know you are ok.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2017

    I have a cáncer psychologist who is very good but she cannot give me back symmetry or a sense of feeling whole can she?  Nothing can.....I spent 5 years working towards getting recon only to find they were playing with me, not even a moment of consideration for me, the pàtient and incidentally tax payer who pays them, indirectly!! I have just been distracting myself and supresing myself and its been yet another summer I did not go to the beach (as I cannot relax there anymore as I am) whereas I used to be there all the time and loved it...

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  • Gracejoy
    Gracejoy Member Posts: 48
    edited September 2017

    Hi Lily, Can I ask you how old are you.I had a right breastmastecomy 3 years ago at the age of 51. I have no plans for reconstruction because I rather have no boob then a fake one. I wear my prosthesis under my swim suit and go to swimming once a week and you can't even tell that I am wearing prosthesis underneath. Try to love yourself and accept new you. Hugs

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2017

    Grace - I am 60 now, I have really worked with prosthesis etc but still I hate them, I am never comfortable and feel constantly ashamed of being found out.  I cannot relax in any public settings like changing rooms, pools, beach, gym. I have been out and notallowed this to stop me but if I cannot relax or enjoy myself then its not worth it...............maybe the key difference is that you chose to stay as you are, I have not had any choice.........and I cannot help how I feel........I have done therapy, hypnosis, havening.........

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  • pupmom
    pupmom Member Posts: 5,068
    edited September 2017

    I think we should be just as tolerant of those who want and seek reconstruction as those who choose to go flat. If I had gotten a mastectomy, I would have definitely gone the recon route. Lilly I completely empathise with you and hope you can eventually find a way to get the recon you clearly need to feel whole again. Hugs sweetie.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2017

    Hi Lilly - I've been thinking about you all day. I'm sorry things haven't worked out. Did you tell us once you had a dog? My best therapy these past five years is sunshine and animals. I've amassed quite a few rescue animals and I love each one with all my heart. The thing about animals is that they are good listeners. Clairabelle the donkey is an especially good therapist, except when she is trying to take a hunk out of my shoulder. I love that animals never judge, they don't care what you're wearing or if you've had a bath. They just want to get and give affection. I wonder if you might be interested in working with a local rescue or shelter.

    I'm worried about you. When I was just coming out of the pit I went off all my meds including my antidepressant and boy oh boy - that was tough- I had a complete relapse.

    We're still here and listening. I hope you find a little joy tomorrow. I'm wishing that for you, ok? Hang in there. Muah!
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  • macb04
    macb04 Member Posts: 1,433
    edited September 2017

    Hi Lily, I felt the same way. I just could not accept remaining horribly lopsided. It was a constant miserable reminder. I too felt like I was going to be unmasked at any time. It made me feel just awful and terribly anxious all the time, like I was strangling and choking. My stress level has decreased a good bit in the last year since I completed my over Pectoral Implant Reconstruction ( Prepectoral Implant Reconstruction).

    I don't expect you to feel differently than you do. That dumba** PS should be ashamed for stringing you along. I really hope you find a way to get put together, someone who will really work with you. HUGS to you.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2017

    Thank you, its good to feel understood, macb04 your words resonated with me a lot.......

    FarmerLucy I already do a lot with abandoned and ill treated dogs and have thrown myself in to that again big time over this summer , have saved about 30 dogs.....I can get on and do things but inside I carry a very heavy weight and just am not taking anytime to BE as when I do I collapse in tears.....

    I found out that they took about 90% of my pectoral when they did my so called modified radical mastectomy, not sure how modified it was since I am skin and bone beneath my collar bone and so I don´t know how they could ever put in an implant without adding in some muscle....I am going to investigate implant and fat transfer but I think it will be a forlorn hope to be honest, I feel permanently damaged.

    I don´t understand why I feel the way I do, except I am a perfectionist with perfectionist / OCD parentage and the lack of symmetry and constant anticipation of being unmasked (good description that) really does me in, but it makes no sense as I know other women who had MX and chose not to reconstruct and I don´t feel differently towards them.....................

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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2017

    Lily, so terribly sorry you are dealing with this. My guess is the anger stems from lack of being able to control and make a decision based on full information. Who can blame you!

    I will say, 5 years alive is not 5 years wasted! It sounds like the outcome regarding surgery would have been the same. I'm sure part of that anger, again, stems from having it drag out instead of being told right away. Cancer puts us at the mercy of those we have to trust and the lack of control--waiting and watching and being pushed outside our comfort zone.

    Remember that life is not perfect. That the older we get, the more things will go wrong and the more we will rely on strangers to make us feel better and help us live as full a life without pain/discomfort. Life is a journey. Even if you could have made it all perfect with the surgery you wished for, there would be aspects to the surgery that might have caused other issues. Instead of focusing on what you were cheated from, think about how fortunate you are to be here to be angry about this. None of us looks how we hope for (no cancer and our lovely breasts as they should have been), but you cannot let that torture you or cheat you of the days and years you have ahead of you. That would be the ultimate waste.


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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2017

    THey have not been honest with me, they say no one needs their lat dorsi muscle yet its a 40cm muscle - why do we have it if its not needed?  I have lived in hope for 5 years, false hope while they played with me........I don´t feel fortunate I wish I had died and others who are loved and have children who care had not lost their lives......I know all the guff about gratitude etc......this just feels like punishment, like its extra hard and extra tough as some kind of punishment for previous lives or things I did when Young that I would not have done with maturity (nothing terrible but we all have skeletons), I am angry that they did not care but mostly what affects me is that I don´t want to keep on struggling without any hope, I need to be symmetrical again, just in clotes, I don´t need a perfect shape or nipple or anything except i need a shape and to not be forced to wear a prosthesis that is hot and uncomfortable in the temperatures we get here, i need to feel ok and I don´t and I cannot see how I ever will as women with no breasts or just one turns my stomach and that applies to my own reflection too

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited September 2017

    Lily, - I may have missed something here, - but is there a reason that you cant have a lat flap procedure? I must admit that even though not easy, the results are amazing.

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited September 2017

    PS Lily, - I did NOT want lat flap done, but my ps encouraged, - and he was right. Most important though, is to be SURE that the ps is very experienced in the procedure!!

    Although a different issue, I, too, feel that I was deceived, not only about the reconstruction hurdles that I've had, but also about my hair regrowth. I am one of those cases where my hair never really regrew. It is extremely thin, and I either wear a hat, or a wig. My feelings about the wig are much the same as your feelings about a prosthesis.

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