Mastectomy or not

elle1948
elle1948 Member Posts: 4 ✭
edited March 2017 in Newly diagnosed
I am 68 and have been diagonised with breast cancer in both breasts.Have just had 4 lumpectomy's. 3 in one breast and one in the other.  They did not get clear margins in one breast.
Can anyone give advice on your experience on whether to have an implant or not.  And your experience with a tissue expander been inserted.  Is it painful.  
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  • primek
    primek Member Posts: 5,392 ✭
    I had a bilateral skin sparing mastectomy 14 montjs ago with immediate delayed reconstruction. My scars are like a reduction scar. My nipples couldn't be saved due to location of of my tumor. I had tear drop shaped expanders inserted with a dermal sling which allowed the surgeon to place my breasts in there normal position and give a normal mammory fold. My expanders were filled to 300mls (400ml expanders) so I awoke with breasts and no slack skin. It was uncomfortable due to drains and the feeling that a bra is sewn in but by 6 weeks the pain had settled. I had no further fills until after chemo. I believe my surgeon chose this partly due to my 500k distance from him. Anyways following chemo had my last fill off 100mls which I didn't find painful and about to have my changeover surgery in 8 days to my softees. The surgeon has decided on a slightly diffetent shape so I have a bit more upper boob.

    I did find the initial surgery painful but once I could figure out how to sleep on my side it was so much better. It's all about pillows. The expanders are tight but I am used to them. I believe the silicone ones will be so much more comfy and feel more like a natural breast. 

    Any other questions feel free to ask.

    We have a reconstruction group also you can join. 

    Kath x
  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
  • mum2jj
    mum2jj Member Posts: 4,317 ✭
  • nikkid
    nikkid Member Posts: 1,769 ✭
    edited March 2017
    Hi @elle1948 - everyone's experience is very different. In my case: I had a left vertical skin sparing mastectomy in April last year and an Aeroform tissue expander inserted. I've had no trouble at all with the tissue expander (except for the initial pain, which comes both from the mastectomy operation and the nerve pain from inserting the expander under the pectoral muscle and then slowly expanding it, via a remote control, over time). The benefits of the Aeroform are that you can self-administer the C02 gas which expands the tissue and this can be done in small amounts, so that the pain that many experience from the saline injections one can be largely avoided. The drawback is that the expander, once full, feels a bit like you're wearing a handbag on your chest and there's a bit of swelling above the breast, just below the collarbone as the expander is circular and this is the top of it. It's not like the teardrop boob ideal - but it works for me! :p Also, it's not so easy if you're a tummy sleeper...but you can get around this by creating a comfy pyramid of pillows.

    Then, once full or to the size you want, you go into what they call 'maintenance mode' and this means just adding gas one once or twice a week as it leaks 2-10% (depending on the version of the expander your PS uses).

    I don't <3  my expander, but it hasn't been awful. I have given it the nickname 'Brenda' and have enjoyed the fact it has given me a cleavage where there wouldn't have been one. In a couple of days from now, my PS is taking out the expander and creating a new breast from my own tissue via a DIEP operation. I'll be happy to say goodbye to Brenda, but acknowledge she did her job for the 12 months we were together  :). She also gave me time to get fitter, lose more weight and plan and prepare for the much bigger reconstruction operation (mentally, emotionally and logistically). It was 12 months I needed.

    I am lucky in that (1) I don't bruise too badly, (2) I heal well and (3) I don't scar too badly either. Your Plastic Surgeon will be the best one to give you advice on this.

    Good luck

    Nikki x
  • Krooz
    Krooz Member Posts: 66 ✭
    Hi @elle1948 - I have had a delayed reconstruction and used both the aeroform and saline expanders.  My Aeroform failed within 3 months - it is filled with air and when I took an international flight it over expanded and created a slow leak. They say this problem has now been fixed, mine was 12 months ago. I now have a saline expander in and it is more comfortable than the Aeroform - it's softer.  If you have to keep it for more than 3 months I would suggest saline. Both expansions are painful as it's stretching muscle and skin.  The Aeroform was easier to manage myself for the expansion and I could slow it down.  WIth Saline I am having 100 ml injections every 2 -3 weeks.  With both I've had trouble sleeping on my side - the tummy is impossible.

    With the expanders I have experienced quite a bit of nerve pain in my upper chest wall from the pressure the expander puts on the muscle.  It's quite sensitive and the edge of my bra causes irritation.

    In terms of reconstruction types - the things to consider are - how stable is your weight?  Implants will not change size with you but tissue flap reconstructions will.  Tissue flap reconstructions are softer and will be your own temperature.  Implants will be cold andmay be uncomfortable when sleeping on your side and many women can not sleep on their tummy with them.  

    Surgery and recovery time is much quicker with implants than a tissue flap.  So, your overall health may influence which procedure you have.  Also, they say that if the implant works well for you, the new models can last 20 years.  But there is consideration about what to do if they don't work or if they do spring a leak.  As we age surgery options reduce and you might think about 10 years down the track - do you want to be considering removing implants and replacing them if necessary?

    Each is an individual choice depending on your personal health circumstances.

    Good luck!  It's a decision we never wanted to have to make!  Krooz
  • primek
    primek Member Posts: 5,392 ✭
    I just need to add that as impants are under your muscle they are warmed by your body, they are not cold. I'm unsure why people believe this. Sometimes my skin feels cool to touch...but so does other areas of my body when I'm cool or in airconditioning. Maybe this is where the myth comes from.
  • nikkid
    nikkid Member Posts: 1,769 ✭
    I agree @primek - my implant has never felt cold :)
  • iserbrown
    iserbrown Member Posts: 5,768 ✭
    @primek @nikkid
    Mastectomy and options of implants and or diep flap surgery et cetera are difficult choices.  I note here that there is a comment that the implants are not cold.  Not sure if your comments are based on experience of having the soft form or an assumption.

    Well perhaps I am different to most!  Mine is very very cold and hasn't improved over the last 18 months, so I am starting to think this is as good as it gets. When I had the expander in, it felt like a giant clamp on the chest and was happy to have the changeover surgery.  Once the soft form (or so that is what they call it) was inserted the breast never warmed up.   As to size, shape and form and how it looks compared to the good breast (or at least it is good at the mo) fabulous! 
  • primek
    primek Member Posts: 5,392 ✭
    edited March 2017
    @iserbrown . I guess it's all different for all. My comnent was based on personal experience and Now we know yours is. Thanks for sharing. 
  • au0rei
    au0rei Member Posts: 252 ✭
    I did not read others' replies. But for me personally, I would not do any implants. I am 43 and I am happy without my breasts, happy to be wearing a prothesis for the rest of my life. My husband (and kids) accepts me the way I am and I will. I had a mastectomy done a week after diagnosis, clear margins. I might remove the right breast which is clear but I am just possibly do it when I am done with treatment and recovered.

    Even if I do not have breast cancer, I would not do implants, for me it's just me. I do not like to complicate my life.

    Just sharing this lady who had complications with implants and breast cancer :smile:
    http://www.chrisbeatcancer.com/how-kim-healed-breast-cancer-costa-rica-retreat/

  • iserbrown
    iserbrown Member Posts: 5,768 ✭
    @primek didn't I read that you are still waiting for your soft form, that surgery is due soon?  So I assume your comment was based on the expander.  I do hope that you find the soft form warmer than I do.  Good luck with surgery as I am sure like me, you will be thrilled with how they look - it's just the hidden extras that you find out about later, coldness
  • iserbrown
    iserbrown Member Posts: 5,768 ✭
    @au0rei - there are a lot of people like yourself who have decided that they are happy to be wearing a prosthesis.  At the end of the day it is about how we feel. It is for us personally and hats off to you for that decision.
  • Hopes_and_Dreams
    Hopes_and_Dreams Member Posts: 760 ✭
    I travelled to Europe last Christmas and was worried that my implant would be cold but even in sub zero temperatures it felt as warm as my natural breast.  We have all had treatment for breast cancer but all our experiences are so different. That's why the sharing on this forum is so valuable.  Jane xx
  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    My implants have never felt cold, but they do get really hot if I'm driving into the sun and my chest is getting blasted through the windscreen. I don't know if its the lack of breast tissue just making the muscles hot or the actual implants heating up ( I suspect the later)  but it can be quite uncomfortable.
  • iserbrown
    iserbrown Member Posts: 5,768 ✭
    edited March 2017
    @Zoffiel
    Exactly - that is why it is so important to share our comments as we are on here and hopefully not frighten those that are considering their options.  We don't know how our bodies will cope but we all aim for the end result of feeling good and not so self-conscious

    Take care

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