Lumpectomy didn't work - now what?

cheezelbug
cheezelbug Member Posts: 10
edited February 11 in Newly diagnosed
After being diagnosed on my 50th birthday, I'm now staring down the mastectomy path given we didn't get clear margins on the lumpectomy.  No chemo or radiation required. 

Of course I've got the standard myriad of questions, and given the fonts of knowledge here I'm hoping for some words of wisdom on how people came to their decisions on the following (noting there's no right and wrong, but hoping there's some others out there that can share how they figured out what was best for them):
  • Unilateral v Bilateral?  I've only got in my right breast, but the thought of going through this twice is beyond me.  For those in a similar position that opted for a bilateral, do you wish things were different?  Do you miss having your own tissue?
  • Implant v DIEP?  I'm terrified of the pain and recovery aspects of the DIEP but on the flip side I'm also scared of having to revisit implants in 10-15rs time.
  • Small-breasted women - you're my peeps!  I'm only an A/B cup, so hoping some of you with similar build are able to jump on and let me know your thought processes, too - did you stay small, take advantage of going up a size etc.
Thank you for reading, and look forward to your insights xox

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Comments

  • iserbrown
    iserbrown Member Posts: 5,516
    edited February 11
    https://www.reclaimyourcurves.org.au/additional-resources.html

    By the sound of your post you've already done some research.   The link above is very informative. 

    Not achieving clear margins does occur for some.

    You mention you are small breasted.  Do you have enough tissue for Diep Flap?

    Are you a public or private patient?

    https://www.bcna.org.au/resource-hub/articles/breast-reconstruction/

    The decision is yours and your medical team.........

    Best wishes 


  • cheezelbug
    cheezelbug Member Posts: 10
    Thanks, @iserbrown - I’ve done some research over the past week including RYC website and the amount of information (and the size of my pros and cons list!) is overwhelming.

    The PS I consulted with advised I’ve got enough for a B-cup, much to the surprise or my husband and I! I’m having a CT scan to confirm whether the tissue/veins etc. are suitable. 

    Confirming I’ll be in the private system.
  • Julez1958
    Julez1958 Member Posts: 1,089
    edited February 11
    Hi @cheezelbug
    If you are thinking of reconstruction ask to join  the Choosing Breast Reconstruction private group on here - it has a lot of very helpful photos and stories of ladies who have gone down that path.
    I was recommended a mastectomy straight  up due to the size of my tumour ( 5.5cm) .
    I saw a plastic surgeon early on and he talked me through the options .
    I didn’t want implants ( didn’t like the idea of a foreign body inside me and also he said I might have the have the implant replaced in 10 years) and liked the idea of using your own fat in the DIEP procedure even though it was a bigger operation and higher recovery , also more expensive ( I had my surgery in the private system).
    I decided on a double mastectomy and reconstruction as you can only go the DIEP once and I didn’t want the anxiety of worrying about it coming back in the other breast ( especially as mine  failed to show up on a mammogram only 12 months prior).
    I was an E cup ( originally a D but had put on weight)
    I went down to a C cup and love being able to buy many more clothes off the rack ( especially swimsuits) than before .
  • cheezelbug
    cheezelbug Member Posts: 10
    Hey, @Julez1958 - thank you - I have joined the reconstruction group and had a look at both implant and DIEP examples that those courageous women have shared; I’m after more info on what lead them to make their decisions to see if there’s an angle I haven’t thought about that would give me a lightbulb moment to make my own decision…

    I'm of the same opinion re: DIEP (one shot so get them both done, combined with anxiety over what if’s) but still wavering on the pain and recovery involved, not to mention all the scars.  If you don’t mind me asking, was it what you expected, and aside from the greater shopping options (bonus!) are you happy with the results?
  • MrsMorrisey
    MrsMorrisey Member Posts: 61
    What is the thought process behind the mastectomy?
    Can the surgeon not do another lumpectomy? 
  • Julez1958
    Julez1958 Member Posts: 1,089
    Hi @cheezelbug
    it was pretty much as I expected
    The actual surgery and recovery the first 36 hours were TOUGH.
    I had a catheter 😱😱and a nurse had to monitor my new breasts every hour for the first 24 hours so almost no sleep .
    I had constipation  and bad nausea from the anaesthetic .
    But by day 4 I turned a corner.
    I needed a lot of help at home from my hubby for the first 6 weeks but luckily he was retired.
    I couldn’t drive for 6 weeks post surgery.
    My position now is that I have two “ foobs” ( that’s a cross between fake and boobs) that are soft and  feel real ( although they only have sensation  around the perimeter)  , they match , I’m not worried about the other one killing me or having to have another operation. 
    my hubby ( of 33 years) pronounced them “ perfect”.
    Which was kinda nice.

  • cheezelbug
    cheezelbug Member Posts: 10
    @MrsMorrisey - I was advised a mastectomy due to the margins involved (pathology recommends immediate re-excision) and that it compromises my nipple (which I’ll also lose). I’ve got a divot from the lumpectomy already so there’s not much left to take!
  • cheezelbug
    cheezelbug Member Posts: 10
    @Julez1958 - thank you for your honest and candid response x

    I’d read about the catheter and hourly obs and had got my head sort-of around it but it’s the rest that I’m struggling with, particularly the pain and recovery (I’m not good with needles and husband has to remove his own splinters as blood grosses me out 🤮)
  • MrsMorrisey
    MrsMorrisey Member Posts: 61
    @cheezelbug oh I see. So it’s about the position. 
    I need to get a 2nd op due to margins but my incision is more my armpit, pretty much sits on the bra line, so my surgeon is going to go back in the same spot. 
    Very annoying and  I hope  the recovery is simple. 
  • cheezelbug
    cheezelbug Member Posts: 10
    @MrsMorrisey - I had a benign lumpectomy a couple of years ago so that breast has taken a bit of a beating… funny, I’d not really thought about it in that way until your note talking about going back in via the same incision!

    Sending good vibes for your op - hoping you can send them back my way when you’re finished with them 🙂
  • Julez1958
    Julez1958 Member Posts: 1,089
    Hi @cheezelbug
    I hate needles too !
    I did a meditation course years ago when working full time and had let it go but I took it up again to help me get through needles, scans, and the multiple medical procedures I have endured since my diagnosis.
    It’s not for everyone.
    The pain was hard as I never even take a Panadol as I don’t even get headaches - it took a few weeks to be pain free .Also my ( new flat) tummy was “ tight” for a number of months.
    I saw a physiotherapist who specialised in breast cancer surgery and that helped.
    Also I bought a wedge pillow for sleeping on my back - I got it from Amazon.
    I slept on my back for about 6 weeks.
    Also have a look at the website  “Reclaim Your Curves”
    it has a lot of practical advice . 
  • GorgyS
    GorgyS Member Posts: 52

    My case is similar to MrsMorrisey's. My big lump was very close to the armpit. I had a lumpectomy and re-excision, with lymph nodes removed as well. I was able to keep my nipple. Only one spot used. The shape and size of the breast are bearable, and with a bra, no one can notice anything. When I received the news of clear margins after the second operation, I was so happy, especially knowing there wouldn't be any more surgeries, at least for now. I celebrate every piece of good news and move forward.

    If I didn't have the option for two surgeries to completely remove the lump and clear margins, I would have opted for a mastectomy, of course. I've never been one to prioritize cosmetic concerns over my health. As for the tests, scans, biopsies, blood tests, needles, and chemo that were never pleasant and often painful, I simply put them behind me.

    If anyone ever asks me about what I've been through (and by 'anyone,' I mean people outside this network), no one will hear it from me unless I can help someone going through a similar experience. However, I will never forget the pain and the scars, which will always remind me of the journey that many women go through. How brave each of us are. <3. Even just going through the mammogram is so painful.

    This week I will have an insertion of PICC catheter and I hope there will be less needle pains for chemo and blood tests. 

    all the best to all of us ( and men too) 

  • Daina-BCNA
    Daina-BCNA Administrator, Staff, Member, Moderator Posts: 28
    Hi @cheezelbug,

    Great to see so many people replying to your post and that you have already connected in to some great resources.

    In addition, I wonder if you've had a chance to sign up BRECONDA? This is an online breast reconstruction decision aid you can access from our website and aims to help you decide, along with your surgeon whether breast reconstruction is right for you and if so what type.

    All the best. 
    Daina

  • cheezelbug
    cheezelbug Member Posts: 10
    @Julez1958 - thank you again - more to think about re: pain management.  I winced having the canula put in for today's scan so I'm now thinking DIEP may be a step too far for me...

    @GorgyS - thanks for your insights and soothing words - I wish I had the same strength as you do x

    @Daina_BCNA - I've had a look around BRECONDA as well - tried to tick all the boxes before coming onto the forum so it wasn't groundhog day for everyone else :smile:  Think I'm one of those people looking for the elusive 'perfect' solution, but in reality just grappling with how much I think I can (realistically) take.
  • Julez1958
    Julez1958 Member Posts: 1,089
    Hi @cheezelbug
    Did you have children?
    I didn’t but a lady who had the double mastectomy and DIEP reconstruction told me it was a bit like childbirth - hellish at the time but as time goes on you forget  about it ….