Breast Reconstruction disaster story

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Krissi_Cat
Krissi_Cat Member Posts: 10
edited July 2018 in Breast Reconstruction

Dear all

I live in the UK but have been so comforted to have found this site and some of your comments. I would be so so grateful for any advice. Please forgive the length of the post. Ill try and be as brief as I can.

Im feeling desperate and quite suicidal about the results so far. All treatment has been on the NHS. Due to a significant sized tumour in my right breast (although thankfully stage 1) I had a right mastectomy (skin sparing nipple sparing) with immediate reconstruction with an implant. I repeatedly requested a double mastectomy. This was for my peace of mind (close family history ) and also because I was completely convinced I would find the lop sided look too awful. This was turned down flat. Being still in shock and very frightened so near to my diagnosis and on my own I wasn't assertive or able to even think to ask for a second opinion.

I met the surgeon who was doing the reconstruction the same morning it happened. I knew instantly he wasn't taking in anything I said. I was sure he thought it was all about size where as I wanted symmetry and said I didn't mind a smaller implant (with a view to reducing the left breast at a later stage). He put in an implant that I believe was too large and which could not be reached by any blood supply from the chest wall - so it failed and I got an infection requiring its removal. He replaced this with an expander and I didn't see him for a further 6 months by which time the breast tissue such as it is has shrunk around the expander leaving a completely deformed odd shape. Also the breast itself is mottled as the nipple that was 'spared' was all part of the infection site. This includes other scaring. I now feel horribly deformed. The surgeon simply said oh we can just inject some saline into this and it will be fine - ignoring my distressed state and my friends questions. Increasing the saline will simply result in a ball shaped rather false looking breast and will be nothing like the left breast.

During this time Ive also been enduring horrible chemo and hideous cold cap ouch ouch ! .... due to end in Sept of this year.

But back to the reconstruction - I have found a few places in London Im investigating - all private and also found a place in New Orleans and spoken to a Dr. Sullivan - he was very informative and helpful and not at all patronising. I just wondered if any of you U.S. ladies might know about this place - ? I think there are some photos on this site actually that are from there.

I really thought I was odd or going mad until I read other posts of women feeling distraught and unable to manage post surgery - with feeling hideous. thank you so much if you have read this far - any comments or advice would be so terribly welcome.

I wish you all well and think you are all very brave.


Krissi Cat


Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2018

    Krissi_Cat we are so sorry that you have gone through all of this. Perhaps it is indeed time for another opinion.

    We have been long-time partners with the Center for Restorative Surgery in New Orleans. https://www.breastcancer.org/about_us/supporters/c... People are very pleased with this team.

    Have you discussed payment/health insurance if you come to the States?

    You may want to listen to this podcast (a transcript is at the bottom of the page, if you prefer this) on "Revision Reconstruction: What You Need to Know"

    (information from Frank DellaCroce, M.D., F.A.C.S.).

    Hang in there with the chemo and cold caps!


  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    dear Moderator


    thank you so much for your reply - Im not sure what my financial situation is in the States and may have to fund myself (in the UK we have the NHS which we pay for by national insurance through employment etc. & is therefore free when needed).


    I will look into options and will listen to the podcast


    thank you again

    Krissi Cat

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited July 2018

    I feel like i can really empathize with you. I had a non-traditional reconstruction after my BMX. It failed within days. I had a huge gaping hole on the right side and an enormous, leaking seroma on the left. It took 16 weeks for everything to heal and i look totally mutilated. And my PS was perfectly fine with that. She said she would just "pop some implants in there, no problem." Except that i had told her and anyone who would listen that I emphatically DO NOT want implants. Well, when I stopped by the office to pick up my records to take for a second opinion, she heard my voice and came barreling out of the back, yelling "I TOLD YOU I COULD FIX THAT." Whaaa...? I don't think so! I took my records and left.

    I have heard so many good things about the Center for Restorative Breast Surgery in New Orleans that i sent them my records. They feel certain that they can fix all the damage. I hope so. I'll be flying from Atlanta to NOLA in August for my stage 1 DIEP surgery.

  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    Hi mustlovepoodles

    Im so sorry to hear about the terrible time you've been having and thank you for endorsing the Centre - even if I end up spending everything I have - I feel I need to do something to restore my life. Please do let me know how it goes for you there


    thank you again

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited July 2018

    Krissi, i feel the same way. I really thought I could be okay with it. It took me over 6 months to admit to myself that i was desperately unhappy with my botched up breasts. And then about the time i was ready for surgery, my mother got seriously ill, so i shelved those plans to take care of her. Recently my DH asked me whether i ever think about reconstruction. I answered, "only every day." He was truly shocked. He thought that because i don't talk about it, i must be okay with the way things look. He told me to book the surgery ASAP. What a good man!

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2018

    Krissi- I had Skin/nipple sparing BMX with DIEP flap recon at NOLA. My PS was Dr Dellacroce who founded the center with Dr Sullivan. They are amazing there. Unlike any hospital experience I have ever had (and I’ve unfortunately had many). Their before & after photos tell quite the story. Those photos are of their everyday outcomes. I see those results in the mirror everyday and stare in amazement. I am so thankful for their passion and expertise; they really are all about restoration not just reconstruction.If i had to do it all over again, I would go to NOLA again in a heartbeat. Let me know if you have additional questions!

  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2018

    krissi Cat there are centres of excellence in the UK for private reconstruction surgery. Also you are entitled to a second opinion on the NHS. Contact the Royal Marsden Hospital in London. They have private and NHS Surgeons, a teaching hospital always has more and better options, it will be ridiculously expensive in the US

  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    Lula


    thank you so much for telling me that - Id be travelling from the UK so for obvious reasons need reassurance its going to be worth it

    One question I have is how low is your tummy scar ? as Im feeling a bit squeamish about it ?

    thank you once again for taking the time

    Krissi

  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    hi Lily

    thats very kind of you to take the time - in fact I am also going to consult Fiona Macneill who works privately and at the Royal Marsden - I just wanted to cover all options as Im so desperate. One question I have if you'd be happy to answer - most posts of people happy with the outcome have had double mastectomies - where as you and I have not - are you now happy with the outcome - or you going to have work done ?

    and importantly are you now well - ? our diagnosis are very similar accept mine is stage 1 - but very aggressive grading and large tumour have meant chemotherapy and then Ill have hormone treatment -

    Ill click on the link you sent too - its so helpful to have found a sympathetic space - the first since it all happened - Ive somehow shied away from joining up with anything before now

    many many thanks Krissi


  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2018

    Krissi- the abdominal incision is very low...just above the pubic hair line (well maybe a little lower than that as I had laser hair removal done years above never they lasered some off the top). Anyway it’s very low in front and follows the natural curve to the hips. I’m 1.25 years out from stage 1, 8 months out from stage 2 and the scars are well faded already. I am able to wear skimpy bikini bottoms and tops no problem. Incision placement is one of the big things NOLA makes sure happens so you can just pick up where you left off and not have to worry about anything showing/needing to cover anything up.

  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    Lulu thank you so much - just to be a bit more 'fussy' - forgive me ! what I noticed on the photos is the scar isn't a straight line but slightly jagged is that right ?

    thank you

    scared Krissi

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2018

    the incision looks like a smiley face so it’s not just a straight line. Straight lines can be done but they will be significantly higher up and will show in a bikini as they’ll sit at about belly button level or just below it. The incision itself is slightly I’ll call it wobbly to allow it to heal and fade the best vs a defined line that is obviously unnatural. My scar across the front is not noticeable unless you know where to look and look close. The sides/hip incisions were reopened for scar revision in stage 2 and are almost to that point. Give it another couple months and I think they’ll be almost invisible too. The thing to remember is that with plastic surgery the goal is to not notice/see scars afterward so the incisions and how theyre sewn up will be different than a regular (non-plastic) surgeon’s work.

  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    hi Lulu


    thats helpful - Im not aware of scar revision so you're clearly much more informed - still considering all my options both in the US and London.

    Krissi



  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2018

    Hi Krissi

    Yes I am well.....I stopped hormone therapy too as was feeling far too old and creaky on it but had done 5 years with a break in middle......

    I don´t live in the UK and have just started the recon process after a huge battle here to get them to accept it is my right and to battle the ridiculously long and cruel waiting time.....once started I have been treated very well but its not over yet. I did see photos of women who had implants with fat transfer on one side only and to be honest it was really very similar, not identical but you would only notice if you knew beforehand..........for the first time I feel more normal and happier in myself even though I am still not symmetrical. I am surprised they are doing recon during chemo as that will affect your recovery......and increases the risk of complication

    My friend had recon done at the Marsden and has been very pleased.....if I can be so bold I think you are under estimating the impact of a major surgery and a Transatlantic flight, you would need to stay in the USA for at least 8 weeks afterwards and I am sure you can find good surgeons in the private system in the UK which would save you a lot of cost, expense and financial risk as you would be self funding in the USA.....if anything went wrong you could be bankrupted...........

    I really know how much this affects us women who are sensitive about it.......based on my experience I would get a few opinions and then decide but not rush in to anything. I interviewed various private surgeons and each one told me a different thing....due to my wider health status I decided not to proceed privately after failed fat transfer....but my advice would be take this time to recover from chemo and research which doctors seem most sympathetic and to "get" you......I felt like a freak for 6 years and at times would sob in shame (no idea why I should feel like that but I did) so please don´t think I am not being sympathetic........I just think its too easy to rush in to a solution when you are depressed and feeling repulsed about yourself (been there) - send you big hugs and if you want to send me private message feel free....xx

  • Krissi_Cat
    Krissi_Cat Member Posts: 10
    edited July 2018

    hi Lily

    You're so thoughtful and kind - thank you - yes I wouldn't begin any surgery until my chemo is over which is September so the earliest would be at the end of the year. You are completely right that I need to make thoughtful decisions with time and not rush into anything which is so tempting when you feel so hateful and depressed about your body ... it sounds to me as if you know exactly where I am with this - this is both a comfort and also makes me sad to think of you & others suffering so much

    I have begun to think the US trip might be a bit of a stretch but it has helped me to feel more emboldened to ask for what I want - & am now investigating places in the UK as quite obviously there are significant hurdles as you point out including the need to take an escort (friend) of some sort which adds obvious expense & I don't have insurance cover


    Id be very keen to hear about your hormone treatment and its affects -

    ps wanted to send you a private message but not sure how to !

    Krissi



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