First anniversary

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repascoe
repascoe Member Posts: 4
edited November 2023 in Newly diagnosed
I am new to this group... can't beleive it has taken me 12months to find this platform.  Possibly wasn't really looking.  I was diagnosed with Invasive Duct Carcinoma (no special type) Grade 3, Hormone + HER2 - on the 1st of Nov 2022.  I have had a lumpectomy, chemo, radiation, currently taking anastozole 1mg & a hystorectomy.  No breast cancer or any cancer (except my sister) on either side of my family.  I chose to do a gene test to see if there was genetic link between my younger sister's sarcoma diagnosis 8 years ago & my BC.  Curiosity killed the cat and I have the BRCA 2 gene mutation. Unfortunately so does my sister.  They are suggesting a bilateral mastectomy.  I am unsure whether I should go flat or have reconstruction.
I would love to hear how people have made this decision and how their surgeries went.
Thank you for reading.

Comments

  • arpie
    arpie Member Posts: 7,668
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    So sorry to see you here @repascoe .. but glad that you've found us xx

    On the blue banner at the top of the page, you'll see 'groups' ... click on that link and then ask to join the Private Reconstruction group AND the Flat Chat group. You'll be able to have private discussions with members there and even see pics of both re obstruction and aesthetic flat closures.

    Ask any question ...as there are NO silly questions.

    With so many recalls and problems with gel inserts, some choose to go flat (less surgery in the long run too.)

    Wishing you all the best with your decision making  xx
      
  • Julez1958
    Julez1958 Member Posts: 1,149
    edited November 2023
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    Hi @repascoe
    The decision about whether to have a reconstruction and if so the type is extremely personal.
    I had double mastectomy and DiEP flap reconstruction 2 years ago and am very satisfied with my decision.
    I was big breasted to going flat seemed a bridge too far ( although I went from an E cup to a c cup and really liked that move).
    Ask to join the flat chat staying flat and choosing breast  reconstruction group on here and there are lots of stories and photos to help you reach a decision.


  • repascoe
    repascoe Member Posts: 4
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    Thank you @Julez1958. Excuse my ignorance what us a DiEP flap?

  • Leach
    Leach Member Posts: 33
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    @repascoe
    I am in a similar boat, although different diagnosis and have decided to undergo bilateral mastectomy with DIEP reconstruction.  What helped me come to this decision has been multi layered.  Firstly, I have a little time on my hand and have had since end Aug to contemplate my next step.  My GP gave me wonderful advice to take time to be by myself to process and sit with this information.  I found walking by myself very therapeutic.  It put me in a positive frame of mind and helped me immensely.  Take one step at a time and gather all the information you can.  Speaking with my Breast surgeon a couple of times and meeting with plastic surgeon started to help me identify what was best for me. I am very large breasted and despite my head telling me to just go flat and get on with it, it was the bitter pill I couldn't swallow.  For me I was able to identify that keeping my shape was the most important thing to me.  I also put my headspace into each option and sat there for a while with it to see how I felt.  The PS has made me feel a lot more positive now that I understand the benefits of having the recon.  I now figure if I'm going to go through this I might as well have a makeover.  The added benefit of the DIEP is that I get my abdominal muscle separation (4 children) fixed at the same time, so starting to look forward to wearing clothes that I have never before and I might even be able to run in time!   I have started my preparations for surgery in the next 2-3 months.  I am walking minimum 30mins every day, riding bike, swimming, about to start body balance.  I have been overweight since having kids later in life and this is the kick up the bum I really needed to get serious.  A friend of mine said perhaps Breast Cancer will just save your life?... I think she is right.  I had a stroke this year and heart surgery, so it was almost laughable when I got hit with this too.  It's amazing how resilient we can be. All the best with the decision you will eventually make.  
  • repascoe
    repascoe Member Posts: 4
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    Thank you @Leach. I am not a very patient person but I agree with you this needs time to sort out.
  • Julez1958
    Julez1958 Member Posts: 1,149
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    hi @repascoe
    DIEP reconstruction is where they take fat from your tummy and move it  to your breasts.
    It sounded like science fiction when I first heard about it !
    This type of reconstruction ( as opposed to implants) is much more common in the USA and UK than here in Australia  but is gaining ground.
  • HelenlovesSnoopy
    HelenlovesSnoopy Member Posts: 94
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     Hi @repascoe, big hugs to you as you go through this.  You are definitely not alone on here as there will be women who've had plenty of experience with all these parts of the journey, others like me mid journey, and some in the same stage as you.  I've met such lovely people on here  <3

    Excuse my using dot points below, it's just quicker because I'm mid chemo though that's going quite well, I'm into the hair loss stage today.

    Anyway, I found out I needed a bilateral mastectomy because I had two cancers, one in each breast, and I was fairly small breasted as well.

    I made the decisions 1.to agree to the bilateral mastectomy 2. and axillary clearance (if sentinel lymph nodes were to test positive in surgery, which they did), and 3. to go flat, more or less at the same time.  

    When I first got my diagnosis the lovely dr and nurse at the WA Breast Centre gave me information and told me it was early days but they were planting seeds so I would have time to think about them.

    They're all personal decisions and important you weigh up what you can know (because no one can tell you everything) and what you want, so here were my thought points:
    1. My faith helped me feel sure I was going to be ok, no matter what, and it's helped my stay positive.
    2. My mother had breast cancer at 70 and 82 - she had a single mastectomy and regretted not having the double.  By the way we were told it was unlikely to be genetic, but now this has happened I'm getting genetic testing, and my older sister is considering pre-emptive surgery like Angelina Jolie.
    3. I have three teenage daughters and a bit going on.  When I had my twins I had preeclampsia and a bit of a rough time with emergency surgery.  For this reason I wanted everything to be as simple as possible, surgery wise.  I didn't want to be returning to have implants replaced down the track, and I didn't think I was up to doing the plastic surgery with my tummy having taken a beating from the twins.
    4. With 1,2 and 3 in mind, I decided yes to the bilateral mastectomy if the surgeon deemed it necessary, and my gut instinct told me I wanted to go flat as well.
    5. When I met my lovely surgeon, she was gutsy and gave me her opinion straight away to go for the mastectomy, and she was willing to put implants in straight away or send me to talk to plastics, but we talked through everything logically (she is a great communicator, and a mum with 3 teens like me), I told her I thought I'd prefer just to go flat and she said I could have something done later if I changed my mind.  She booked me in for surgery, but I also had the weekend to change my mind about anything.

    In my case, surgery went well - everyone who's seen my chest (I'm now about 7 weeks past surgery) has commented on my neat chest wall and tidy scars.  I had 13 lymph nodes taken under my right arm and some cording since but that's almost sorted now.  My physio at the hospital is wonderful.

    There's been some tears and grieving over the breasts, I forgot to mention my hubby, I did include him in my thinking but he wanted me to do what I felt best.  But I am really happy with my Berlei Bra (that you will be given) and my proper prostheses which I got last week.  I'm not really thinking about it a lot, but that's me.

    I hope this helps a little bit!
    Helen xo
  • Abbydog
    Abbydog Member Posts: 482
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    I started with R Mastectomy with axillary clearance, Chemo and R/T
    I considered going Flat both sides. But I decided that I would be too bottom heavy, without boobs.
    I would have liked a DIEP to both sides, but I was unsuitable.(based on a CT scan of my abdominal blood vessels)
    Symmetry was very important to me.
    So my final decision was to have a Lat Dorsi on my R side.
    The other side I had prophylactic Mastectomy, with a reduction of skin.
    I had tissue expanders both sides, later changed to Implants.
    I am very happy with my results. I will get 3D nipple tattoos soon.
    My only regret is that I should have gone up another 50-100mls
    When I shop for bras I would ideally need a 20C. They don't make many.
    Maybe i'll eventually lose weight, and I'll be an 18C.