Reconstructive surgery

Hi, I had DCIS and a mastectomy in June. It hadn't spread so all good. I will be having another mastectomy for preventative reasons and my surgeon said I could do reconstruction at the same time.
He referred me to Dr Kane in Brisbane to discuss this. He talked me through tram and tug flap surgery and expander/implant surgery. He showed me some pictures and a couple looked ok but I thought some looked awful. 
Plus the cost AFTER Medicare and health fund rebates is between $12k and $15k. 
Ive found decision making very easy up until now but really don't know if I want to have reconstruction or not. I would like to have it if they will look ok but would be very upset if they ended up like some of the pictures he showed me. I can live without boobs if that's the case, the first mastectomy hasn't worried me. 
Does anyone have any experience of this that they can share with me please? Also, is it worth getting a second opinion regarding the cost. We live in mackay so not sure if there is anywhere closer than Brisbane that does reconstruction. 
Any thoughts advice would be greatly appreciated. 
Thanks, Rach. 

Comments

  • Afraser
    Afraser Member Posts: 4,354
    It's a really personal choice so it can be hard to decide. I had a single mastectomy and no reconstruction, never really felt inclined towards it. I wear a prosthesis and find it simple. But others here can talk about bilateral mastectomies and no reconstruction and of course about options for reconstruction. My surgeon always said no rush, it can be done when you want, so my only advice would be to wait till you are quite sure about what you want. Then it's usually right. Best wishes.

  • primek
    primek Member Posts: 5,392
    I had a bilateral mastectomy and implant reconstruction done through the public health system. My results are pretty good. If you join our group you will have access to many photos of ladies here with many different procedures. 

    http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

    Also many ladies here live flat and fabulous. There are no right or wrong answers. It's very personal. You could have your mastectomy now and go on waiting list for public reconstruction. If you find you feel happy being flat and fabulous, well you don't have to proceed. 
  • Unicornkisses
    Unicornkisses Member Posts: 402
    edited November 2017
    I have had a single mastectomy but have been undecided about taking the other off as my cancer did not show up properly on mammograms and ultrasounds.
    I have seen a plastic surgeon who does DIEP flap reconstruction, using skin and fat rather than the Tram which uses muscle as well. Though due to the position of my blood vessels I will have to have a little muscle taken as well.
    The plastic surgeon works in both the private and public system.
    I have put myself on his public list. We are in NSW and the wait time for this operation is approx 12 months.
    See if your surgeon will work in the public system and what his wait times are.
    If he doesn't I would see if you can find another equally qualified one who does.
    Your surgeon should be able to advise you there.

    The quote for private single reconstruction I had from my plastic surgeon using DIEP was about the same as yours after NIB and Medicare rebates, about $15,000.

    I have also been told that if I decide to remove the other breast as insurance, it could be done at the same time, but it would extend the surgery time from about 6 hours to about 10 hours.
    I have enough tummy fat and skin to do two large B/C cup breasts. 
    I have 12 months to decide what I want to do.

    I am lucky to know several people who have gone through this plastic surgeon and are happy with the results, though I haven't looked at their breasts, of course.
    I have seen some pretty awful results on the Internet, but I think a lot are from overseas and many are very old, I would be inclined to look at the posts on the reconstruction group here and any from your intending plastic surgeon, ask to see some, they usually have some on their PC.

    Of course some people do decide not to reconstruct, perhaps after living without doing it for a while might help you decide. There is no rush to have it done, you can wait quite a few years if you like, and if you go on the public waiting list you will have time to decide whether you really do want to go ahead with it or not.

    Good luck with your decision, Jennie
  • mum2jj
    mum2jj Member Posts: 4,327
    Hi Rachel,
    There is always the option of going public, however as you have already had your mastectomy there will be a wait time. This differs each hospital. I can see you are a member of the choosing breast reconstruction group so this link to the photo stories on there may be useful to look at. Every surgeon will produce different results and it also depends on each patient, for eg how much tissue is available. In regards to out of pocket expenses this can vary greatly from surgeon to surgeon, some may not charge as much for BC patients. It’s really up to them, but it never hurts to ask. You can always get a second opinion. If only we had a crystal ball and could see our results. I have had a bilateral TRAM flap and have no regrets. They don’t look like my old breasts, but living in the tropics I found that I didn’t like wearing a prosthesis as it really restricted what I could wear and I often worried as the weight of it fell forward when I was in light weight dresses and tops and bent forward. Having said that there are many ladies on here who embrace being flat and fabulous. There is no right or wrong, just what’s right for you. 
    Paula xxx
  • onemargie
    onemargie Member Posts: 1,264
    Hi there Rach you can also go through the public system in qld for your reconstruction surgery if you didn’t already know. I had left boob off June last year this was the affected side no lymph node involvement and scans all clear aged 43 and took the other off nov last year as a preventative and am now on the public waiting list for reconstruction but I’ve been waiting over  a year so far just to see the surgeon at the royal Brisbane and won’t see one st least until middle of next year then around 18 months after that for the surgery. And. from memory cairns does recon but I’ve read about women waiting over 5 years for their recon and I think the new Sunshine Coast uni hospital might do it too but I’m not 100% on that and you’d have to check. Ive involved my local mp about wait times and out of pocket costs for recon for private patients so watch this space for info on that but the down side is you have to wait positive is no costs to you. Its classed as elective surgery which is ridiculous isn’t it. I saw dr Alys Saylor for a private consult just for an opinion she does Private and public out of pockets for me being a private patient in a public hospital was going to be around $15000 and we don’t have private health cover either her rooms are in fortitude valley in Brisbane and her consult fee was only $150 and I got a lot back from Medicare too. So she might be worth seeing for you to get a cost I highly recommend her  if you’d like the second opinion she told me I don’t have enough skin for the tram flap (god bless her)! But could do the expanders then implants. I have been in two minds as well about the whole recon thing.... do I want more surgery etc etc so I will see how I feel after I see the surgeon at the royal and go from there. I’ll also have to have 4 weeks off work with the expanders and two weeks off for the the implants surgery can be between 3 and 6 months in between the two depending on how well I expand. So there’s the loss of income there too and bc has already cost us enough It doesn’t bother me either having no boobs and I just use the crocheted prosthetics which are comfy and light and I prefer them to the silocne prosthetics they give me a rash. Hope this helps. Margie x
  • onemargie
    onemargie Member Posts: 1,264
    You can also join the reconstruction group on this website to see pics and loads of info on all your questions too if you haven’t already joined. Margie 
  • My surgeon here in SA didn’t charge a gap for LD reconstruction in the private system. She’s not a plastic surgeon though. She has done 4 operations so far, lumpectomy, mastectomy, LD recon (quite painful) and reduction on the other side. I still have to have the nipple done, but am over surgery for various reasons. It has taken 3 years to get to this point as I had to wait 2 years after radiotherapy to get reconstruction done.

    I am happy with the results, although there is a huge scar across my back and scars across my chest. I wouldn’t go back to just having one boob. I felt self conscious all the time. Now I have size c boobs and i’m happy with them. It was a painful process getting them though. All the best. 
  • Valbox
    Valbox Member Posts: 5
    I had a DIEP reconstruction 3 weeks ago following mastectomy and uplift on my LH breast last August. I had a Aeroform Expander inserted and was put on a mission to lose 15 kgs to ensure surgery was safe. Spent 5 days in hospital and now 2 weeks home all is going well.  I am not regretting my discussion now but you do need time to consider your options.  I had 4 weeks from diagnosis to Mastectomy with a Node surgery in between and felt I was rushed with no discussions with other people to discuss options  This forum is great but I didn't find this option until well after second surgery.  Talk to others, it is so important.  I went Private but it appears there is a lot more help assistance with Health professionals through the Public system. I am still struggling with the mental anguish of this all and "why me" but I am working through it and seeking support groups that I can join and most importantly to help others.  Good Luck
  • Vallerina
    Vallerina Member Posts: 183
    Hi Rachel, I had a single mastectomy, aeroform expander and a silicon implant halfway through last year at Royal Brisbane. I have chosen not to have a lift on my natural side because the reconstruction result was quite good and is a good match. I am pleased with my implant boob even with no nipple. It looks great in a bikini, or bra, no-one would ever know. When I take photos I am actually more bothered by my fat tummy. :)  I had a lovely figure and was devastated  this happened to me but have come to terms with it all.  the recon choice is   very personal and all your decision. Yes it can be very hard to choose, not being certain of the final outcome..I was public patient and was only offered silicon implant so choice was easier. It was the simplest (cheapest) option with least recovery time and It also means I could always have any of the other surgeries later, if needed. (Hopefully Not) The care in the public system at Royal Brisbane was fantastic.  I agree the clinical photos are daunting, they dont show the whole person  and are often taken in bright hospital light before the scars have had a chance to fade.
     Good luck with your choices.