Home Newly diagnosed

On the roller coaster

jamavonjamavon Member Posts: 23
edited November 2019 in Newly diagnosed
Hi, it's been a whirlwind....mammo, ultrasound and biopsy last week. Diagnosed with a malignant phyllodes tumour which is apparently a rare form of breast cancer. The surgeon has ordered CT scan and bone scan this week. I will have a mastectomy next week with or without reconstruction. My question is can I have a double mastectomy? I have large breasts 12ff and would like to go a lot smaller...how on earth are they going to get them to match?? At 50 I still want to look and feel good about myself? I meet with the surgeon on Friday and hope that my other scans are clear. Yes, all this to worry about and I am thinking about perky breasts 🤣


  • kmakmkmakm MelbourneMember Posts: 7,973
    edited November 2019
    You can have a double mastectomy sure, but the trick will be finding a doctor who is prepared to do it. Some women struggle to find doctors who will do it for psychological reasons. If there is no medical cause they are reluctant.

    The plastic surgeons are very adept. Being so large in the chesticles you may have an argument that the imbalance will be too much of a strain on your back, neck and shoulders.

    If you are considering reconstruction you need to have a conversation early with your breast surgeon and get a referral to a plastic surgeon to discuss your options. If you choose to be smaller in your recon I understand that they will seek to reduce the other to match.

    You also need to ascertain the waiting list in your area if you are going public, and check your savings if you are going private. This is an expensive business...

    I had a double mastectomy (cancer in one breast but I was the third woman in my immediate family to have BC so it was on the cards from the start. It turned out I have a genetic mutation) and DIEP reconstruction. I'm sad that it had to happen but no regrets. I am happy with the outcome, having my own warm flesh on my chest. You have to have some belly fat though!

    You might like to join the Choosing Breast Reconstruction group here. You'll find the link in one of the menus.

    Big hug @jamavon. You're in the worst bit now, it does get easier once you have a treatment plan. Hang in there, K xox

    PS HELL YEAH you get to think about perky breasts! No apologies on that front. Your body, your right to feel good about it!
  • jamavonjamavon Member Posts: 23
    Thank you, lots to think about. 
  • HilsHils Edgewater, Perth WAMember Posts: 55
    Kmakm, I too am going through the same as you... it sucks! I also have big breasts and am so scared about being left with one. I've decided on recon after treatment and will have a lift and reduction on the other one to match the new one. Always wanted smaller ones anyway😉 ! Good luck next week, my op is on monday next week too. Sending you lots of strength and hugs 🤗x
  • jamavonjamavon Member Posts: 23
    Hils, all the best for Monday ♥️. Can't wait for my surgery. I can feel my lump and just want it out of my body. Really feeling anxious if it has spread anywhere else..such a waiting game. Take care.

  • arpiearpie Mid North Coast, NSWMember Posts: 5,592
    All the best with your meeting with the surgeon on Fri & surgery next week, @jamavon - the waiting is the absolute pits.

    Once you have the pathology results, the team will work on your whole game plan, so you'll know what is ahead.

    @Hils - all the best for your surgery too.  

    Take care, both of you xx
  • HilsHils Edgewater, Perth WAMember Posts: 55
    Thanks Arpie and Jamovan. Since they did the core biopsy I can feel a huge lump too, the swelling and huge bruise has only just gone. They really upset the cancer. It now hurts sometimes so reminds me it is there, so yes get this thing out of me! You'll feel better once you know its no where else and you have a plan. Never thought I'd be saying that but there you go! good luck! xx
  • Michele BMichele B Member Posts: 135
    Wishing you both all the best for your ops with the best possible outcomes . Best wishes xxx
  • jamavonjamavon Member Posts: 23
    Met with surgeon on Friday. CT scan came back clear, but apparently I am the proud owner of a kidney stone! Immediate reconstruction is off the table as my tumour is close to chest wall and they will need to take some muscle to get good margins...my rare tumour type requires 1-2 cm margins. So coming to terms slowly with only having 1 breast. Keeping busy researching mastectomy bras and other things😊
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,853
    Here's a link to help you! Your breast care nurse should be able to help. I received my kit when I was admitted for surgery 

  • AfraserAfraser MelbourneMember Posts: 3,668
    I’ve been monoboobed for seven years, didn’t choose reconstruction (slightly to my breast surgeon’s disappointment). I found the things that helped were: feeling comfortable about the way I looked - no-one else has to, but if you are comfortable then the (usually small number of) people who see you topless will be too; a really well fitted bra and prosthesis, get a professional with both to start off with; be confident, you are an entire person. Best wishes. 
Sign In or Register to comment.