Tracey62Tracey62 Gold CoastMember Posts: 298
dont take this personally ladies . . . but I had really hoped not to find myself back here <3

2015 wide local excision, chemo 6 months, rads 6 weeks and 2 years Letrazole later I find myself back in the club that none of us wanted to join, but so grateful to know I am not alone.

New scan shows THREE new primary tumours in my other breast. Thankfully other tests show no spread to bones, liver or lungs, and lymph nodes are not enlarged on scan. Much to be grateful for.

so because this is not a recurrence or a secondary, but, lucky me, a whole new bc x 3, the surgeon is recommending bilateral mastectomy. I agree with him that sadly it is necessary. 

Ive been looking up mastectomy without reconstruction on the internet. There are some good sites like Flat & Fabulous that recognise not everyone wants reconstruction after mastectomy. I am a 38DD & the thought of not having heavy breasts interests me. Just think, no more sore shoulders and strap marks  :D

I had almost decided to remain flat after surgery when I saw some great results with DIEP flap reconstruction. Would really like to hear from anyone who has had bilateral mastectomy and either no recon or a flap recon. Did you get recon straight away, or after chemo? How did you decide and what has life been like for you since?

How on earth do you make this decision?

Yeah though I walk through the valley of the shadow of death


  • nikkidnikkid Member Posts: 1,090
    Hi @Traceyt62, I had a DIEP Recon 11 weeks ago...as did @melclarity. Our photo stories are in the Breast Reconstruction Group -  it's a closed group so you just need to request to join.

    I am very very happy with the DIEP results, as it's so natural...but it isn't for everyone and we all make decisions that are right for us. Only around 10% of women in Australia who are diagnosed with BC actually end up having reconstructions.....

    Anyways, we are there to help with any queries you may have...just join the group :).

    Nikki x
  • Tracey62Tracey62 Gold CoastMember Posts: 298
    Thanks Nikki, 
    I thought the group was for those who have had a recon, didn't realise it was also for those of us still exploring the options.  So glad you are happy with your results.
    hugs, Tracey
  • nikkidnikkid Member Posts: 1,090
    No...for anyone thinking about it or having or had it  :)
  • melclaritymelclarity Member Posts: 2,834
    @Tracey62 Nikki is right :D it's for absolutely anyone exploring options, that's the whole great idea behind us popping our stories in there, so its relatable for others. Here's the link

    Hugs Melinda xo

  • ZoffielZoffiel Regional VictoriaMember Posts: 1,475
    The logical approach would be to ditch the tits then make up your mind about reconstruction later--particularly if you are in two minds about what you want to do. Unfortunately, it's a bit more complex than that.

    First hurdle is finding out if you need to have chemo before surgery, which seems to be pretty common if you choose reconstruction s or have certain types/grades of cancer

    If you have private health and time to tinker around, take leave etc, you have quite a few options regarding surgery and reco.  If you are relying on the public system, anecdotally, delaying reconstruction can see you languishing on waiting lists for years to get your new boobs finished off, depending on where you live or where you are willing to travel.
  • melclaritymelclarity Member Posts: 2,834
    Tracey, as my 2nd diagnosis in 2015 was a recurrence, I did chemo finished in December 2016, I didnt do the single mastectomy/diep flap reconstruction until February this year 2017. I had a lumpectomy back then so was all clear and had time to think. My Surgeon and Plastic Surgeon are private but they also work in the Public System too. I was put as a Category 1 as it was my 2nd diagnosis of Breast Cancer which meant I didn't have a waiting period. So it depends on your complete history and diagnosis. I'm also big breasted at a 10E, and the diep flap recon has the left side a little smaller which I love LOL, so he is going to reduce my right side to match. Really happy with the outcome. Definitely worth doing your research and checking with your Surgeon what your options are at the time of Mastectomy. Hugs Melinda xo
  • Tracey62Tracey62 Gold CoastMember Posts: 298
    Ok so my quote for the week is now "Ditch the tits!"
    thanks for a good laugh Zoffiel  :D
    Thanks Mel for sharing your story. I was stumped at the 10E, then realised that's dress size, not inches  :o, which makes my 38DD sound humongous. I'm an 18DD and would happily go smaller, just not sure whether that's flat-small or recon-small.
    thank you ladies for responding to my posts, I'm off to read the Recon group.
    hugs to you all  <3
  • Megsie59Megsie59 Member Posts: 5
    @Tracey62 My sister had DCIS diagnosed in 1997. Had a full mastectomy and prosthesis. Back then, I don't think reconstruction was routinely discussed as an option. She had two small children and also another cancer (brain tumour) so elected to have the second breast removed, for prophylactic reasons, twelve months later. She's had no recon and is totally flat.......BUT.......to be honest, and maybe it 'cause I'm used to her appearance, you'd never know. She wears patterned tops, ones with frills etc, scarves, funky chains and necklaces and is a great role model for flat and fabulous! However, for me, diagnosed with IDC grade 3 in Sept '16, recon is my choice. Needed a mastectomy of right breast and currently have a tissue expander. Will have permanent implant inserted in a few months. It really is such a personal choice. Keep researching and thinking about what is best for YOU.
  • mum2jjmum2jj Member Posts: 3,303
    Hi @Tracey62 so sorry you are back here. I feel your pain as I had a recurrence. I initially lived with one Breast and wore a prosthesis however decided to have my other breast removed and at the time of the second mastectomy had a bilateral TRAM flap.  When you join the choosing. Ready reconstruction group have a look at the announcement which appears at the top of all the posts. There are heaps of photo stories there that will give you a realistic idea of what you can achieve from reconstruction. The type of reconstruction you choose may depend on whether you have radiation etc.  It is of course a very personal decision and one of course only you can make. 
    Paula x
  • TennilleTennille Member Posts: 147
    Had a mastectomy at 32 weeks pregnant. 6 years later, still no reconstruction and never had any desire too. I still have 1 breast. I wear a prosthesis when I want too and dont when I dont. Also no boobs means less weight on the scales.
  • LMK74LMK74 BrisbaneMember Posts: 654
    Tennille, does the prosthetic move around, like if you bend over is there a risk it will fall out lol. I'll be ending up with one also and just wondering.
  • BevkkBevkk Member Posts: 22
    i had a left mastectomy June 2016 and so far have elected to not have a reconstruction. I may change my mind in the future or maybe not. There is no pressure to make a decision. At present I wear a prosthesis which slips into a bra with a pocket. I would recommend visiting a mastectomy bra and prosthesis specialist. Medicare refunds are available on a prosthesis. The silicon one I purchased cost $400 and Medicare covered the full cost. I find it very heavy so bought a swim form and wear it every day. There was a brochure in the my journey kit that the McGrath nurse gave me. Good luck with any decision you make 
    Bev xx
  • AfraserAfraser MelbourneMember Posts: 1,462
    I too have a silicon prosthesis (they last about 2 years, I am on my second) and find it easy and simple. I know some people in tropical climates seem to find them hot but I have never had a problem (was recently in 38 degree Spain and hot and humid Singapore). Bra with a pocket, no slipping, either out or sideways. Wash like you wash your body. After a couple of years they get a bit wrinkly, the cost (I also paid $400) is rebatable. Every two years too. I got mine fitted at home, also could choose bra options at home too. I won't have a reconstruction - I wasn't keen from the start, had a long term seroma so wary of more surgery and I don't think I need one. I am comfortable with how I look, a big test was a communal wash room before a hot spa in Iceland last year. Icelanders don't fuss and I felt utterly comfortable in my natural lop sidedness. Everyone has different wants and needs, but I am happy with my prosthesis.
  • LMK74LMK74 BrisbaneMember Posts: 654
    Afraser, that's reassuring to hear.
  • TennilleTennille Member Posts: 147
    The prostetic pulls a little when you bend over but sits in the mastectomy bra well. I get the bras with the lace paneling though that gives a bit more protection. To be honest I got to the point where I felt although I need some modesty, it is what it is and if someone gets a glimpse of scar when I bend over then so be it. 
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