Am I being ungrateful/unrealistic?

[Wonkyboob]

A few people have contacted me to ask where I had the DIEP. It was at Queen Elizabeth Hospital, Birmingham. Highly recommended.

[jillybee]

Doubletrouble,you have had a rough time of it.I have had similar problems.....I finally had a DIEP at a large regional hospital in Essex....fabulous place,and surgery was quite amazing.Have had problems with seroma in abdomen and felt a bit let down by them.Funds commissioned for surgery, and check ups,then when problems arose after,felt they were not interested.Referred myself back to my local hospital,they are are sorting me out.where did you have your DIEP?

[doubletrouble]

I too had very similar experiences to you with by bilateral mastectomy (I had cancer in both breasts at the same time) and immediate reconstruction with expanders in September 2013.  The expanders were nothing but trouble and my PS continued along this route but after 5 unsuccessful attempts, I asked for a second opinion and it was deemed that due to the amount of operations I'd had that I was no longer suitable for implant based reconstruction.  My PS referred me to another hospital and in January 2015 I had bilateral DIEP reconstruction and have just had a smaller operation 2 weeks ago to address some issues of fat necrosis and symmetry.  I too, like you, will need at least another operation (possibly more) as they're rather bigger than I'd wanted and I  still need nipples doing.  I completely agree with you, it's the best decision I've ever made and they feel like me and do not hurt the way that the expanders did (incidentlaly when these were removed - they'd only been in since January 2014 as I was left with nothing but my hanging skin from e/o September 2013 - January 2014), the right one had ruptured and had leaked into the surrounding area. My body had developed capsuluar contracture on both sides so luckily, the slimey green gunk that the now empty implant was sitting in was unable to escape and travel around my bloodstream.  Although, I had been feelingn SO fatigued and exhausted for a few months leading up to my DIEP and believe that my body had been working so hard at trying to fight this infection as well as acgtually forming these capsules to isolate the expanders for the rest of my body!  Incidentally, my planned DIEP was on 20 January but had to be postponed to the following week as I was a mess inside and they had to deal with that first and let the infection clear before attempting the DIEP recon the following week.

So glad you are pleased with your results!  Which hospital did you attend for the expanders and then DIEP?

[Wonkyboob]

Haha it sure is!

[jillybee]

New user name.....superboob

[Wonkyboob]

Hello dear ladies! I hope you read this - I want you to know how much your words of encouragement helped me at a time when I was feeling very vulnerable. I took your very sound advice and asked my GP for a second opinion - I can honestly tell you that this is the best thing I have every done in my entire life (except, of course, for finding the lump and dealing with it..) 

I had the good fortune to be referred to a superb surgeon who readily agreed not only to revise my unsatisfactory reconstruction but to improve the healthy breast, which had been left looking quite strange (perhaps I didn't mention this earlier; original plastic surgeon had placed my nipple in a very bizarre postion). 

To cut a long story short, I had left DIEP and right mammopexy revision one month ago, and I could not be more delighted with the results! My new breast is natural, warm, level with the other... i truly could not be happier. Not to mention the tummy tuck - wow! i hadn't accounted for how much I was going to love that! I had virtually no pain post-op, in fact, it was only after that wretched implant had gone that I realised how uncomfortable it had been. The wounds were a tiny bit sore, as you might expect; but the abdominal wound which I thought would be awful felt no worse than wearing knickers with over-tight elastic. 

So thank you, thank you so much, for pointing me in the right direction. I have a bit more to do before I'm finished; minor adjustment, nipple and so forth, but I have really turned a corner. This surgery has changed my life, and I'm not sure if I would've taken the step without you. xxx

ps - I'm going to have to get a new user name 🙂

[NAZ]

Wow Mary, I didn't know that either!! It gives women some control back of their bodies at least ...

[mary32]

Hi

As far as getting a referral from your GP for a second opinion. Do some research and find out the name of a ps with a good repuation and ask your gp to be referred to this person by name. I didn't know that you could do this until recently. I pretty much dictated the letter!

Mary

[Wonkyboob]

Nolton9 Your words really make sense. Self-indulgent and vain was exactly how I saw myself after that PS appt. Thank you for your encouragement - you are right - hopefully I'll be around to look down at this chest for a very long time so it's worth getting it as good as it can possibly be. It's amazing how much better I feel just from being able to discuss this with you and the other women who have taken the time to reply. I am going to make an appt with my GP to ask if she will refer me for a second opinion at another hospital. xxx  🙂

[Nolton9]

You are not being unrealistic at all... there is a ton of research out there that shows that a succesful reconstruction (if that's your choice after MX) gives those women an enormous boost with their recovery and getting back to feeling 'normal'.

I had a uni diep reconstruction a few months ago and whilst I have been delighted with the result there are a few areas on the "journey" I've had to push the hospital on/ or challenge what they've offered and I've found myself thinking like you, perhaps it doesn't matter or feeling self-indulgent/vain that I'm hung up on the "finishing touches" but then I tell myself none of this is my choice and I'm determined to get the best for me (and hopefully some women that ask a similar question) that I can.  I also think to myself I hope I'm looking at this for another 40 years or that some people spend hours picking a new car/paint for their sitting room - what ever!! we all just want the best really

Don't feel bad about wanting to look normal or even as good as possible  or politely disagreeing/challenging a PS (although I completely get that when you're there, bare, changed-chest to face with them that can be tricky!!)  whatever job we are in we have to deliver to a certain standard and keep our customers/clients happy or at least be very honest about the possible issues and work hard to put them right.. 

It's hard to keep getting back in the ring, I really get it but you have every right to it, perhaps take a friend along to help you with the appointment??

Good luck,

[NAZ]

Yes, it makes perfect sense to me 100% !

You are right, when we are going through treatment, we are indeed in a very vulnerable position and we have to place trust in the professionals who say they can do the best for us, In my case, this did not happen. There were other recon options available (even 5 years ago) but he did not share those with me. I thought TE was the one and only and because i was desperate for 'something' to replace my lost breast i went with him.

Do stand your ground, just because we are alive, does NOT mean that we have to acccept second best reconstruction. Many women on here report great results and you are no exception!

So, get out there, get a second opinion and stamp your feet!

Best wishes

[Wonkyboob]

NAZ - thank you - THANK YOU! I'm so sorry you had a horrible experience but yours sounds so similar to mine that it has given me hope, since your LD recon went well afterwards. Listening to your story is just what I needed; a bit of a jump start to go out there and assert myself. The treatments we have to endure make us very vulnerable and leave us without the energy and clear thinking needed to evaluate our options and at those vulnerable times we need to be able to trust our surgeons implicitly, and that's what I did, which is why this kind of feels like a betrayal. I hope that makes sense? x

[NAZ]

Hi

I could not read and run! You have every right to feel cheated and you certainly should not feel grateful for a less than satisfactory result!

As well as some briliant surgeons out there, there are also sadly some C ++P ones - my first surgeon fell into the second bracket unfortuantely for me. Same experience as you, TE recon, didn't go well, skin split in several areas, lots of fluid leaking down body etc etc. He failed to recognise the error of his ways, so left me with a large high sitting mound on my chest, full of holes and crap and was also planning to do a nipple recon. He then realised that this was not going to happen and referred me over to another hospital for advice. New surgeon took one look and was horrified. End result, a better recon using own muscle and implant (LD). i tried to sue idiot surgeon for negligence (but that is another story!)

DO GET A SECOND OPINION -it is worth it!

PS where idiot surgeon was going to place my new nipple was a mystery to me too as there was a 4cm mismatch between the two nipple areas! would have looked very freaky indeed.

Best of luck xx

[Wonkyboob]

Thanks so much Mary, I feel better just for having a rant! I don't think I can go on like this. I'm supposed to get a nipple reconstruction on this thing, which seems ridiculous; where will he put it, in the middle of the reconstruced mound or level with the other nipple? You are right, I should get a second opinion. x

[mary32]

Hi

You should not feel guilty. Your ps has done a bad job, and how dare you question him!  You have every right to feel aggrieved. You need a second opinion maybe?

Mary

[June_BCC]

Hello Wonkyboob

Welcome to the forums.

Whilst waiting for replies maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

best wishes

June, moderator

[Wonkyboob]

Hi, I had left sided mastectomy October 2012 with immediate tissue expander; chemo and fills with TE in place. It was very hard going, but I didn't mind. March 2013 I had more lymph nodes removed and TE removed as it had become infected - two leaky holes with fluid running out and down the front of my body, to be be exact. But I didn't mind, because I was alive, and shortly aferward I got the news that the cancer was gone. SO GREATFUL! March 2014 had reconstruction with implant and reduction of right breast. I wasn't offered another option by my plastic surgeon and was SO GRATEFUL!!! that I trusted him fully and didn't question it. The trouble is, it looks awful... Puckered, sits much higher than other breast, looks worse than I did when I had only one breast and used a prothesis. Went to my review appt to ask about revision - plastic surgeon was quite annoyed with me; said it would be too difficult, I would hardly see any benefit, and there is no funding for further surgery. I came away feeling dreadful - after all, I'm alive and cancer free; how many women would gladly swap places with me. But still, can't help feeling cheated, and because of that, guilty.