Newly diagnosed invasive carcinoma stage 2

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  • Nicksta
    Nicksta Member Posts: 22
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    Hi there @onemargie. Thanks for replying . I’ve had one of my long dark mornings of no sleep lots of thoughts ......
    Thanks for sharing your journey , wishing you the best . I am still learning where to click on this site so far it’s been great . Each story is so different ., I like the sound of your approach and appreciate your comment as a nurse not having patience . My friends dad ( got cancer at the age of 35 he is now 70)enlightened me last week that  they call us patients this is for a reason .... you must have patience as there is always more waiting and more testing !!!! He is so right ! 

    My surgeon said the MRI  would now give a false in accurate reading due to surgeries and also DCIS may not present itself as it didn’t on my other scans , mammogramne   and ultrasound . 
    She also confirmed at this stage mastectomy and lumpectomy in my case will give the same result as it hasn’t spread and she insists a mastectomy is not necessary for what she is treating . Breast care nurse elaborated in this in a discussion with me also telling me it was still my decision .
    My mind is clearer since my first post . Thanks for your specific comments I take all of it onboard . I admire your strength good girl !!!! 
    Anyway let’s see third time lucky for  margins ....
    all the best to you sending love xx

  • onemargie
    onemargie Member Posts: 1,264
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    @Nicksta see  after much thought you have a clear decision and plan now so thats great, all the very best for friday lovely, keep us posted how you go, fingers crossed, take care, big hug, margie xxx
  • beccabecca
    beccabecca Member Posts: 71
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    @Nicksta  
    so sorry to hear that you have to go for a 3rd operation in the hope of getting clear margins. This is where you wonder if an MRI b4 the 1st surgery may have given a clearer picture, but nothing can be done about that now. That's good for you that you don't need a mastectomy as that just adds more healing etc and possibly harder to adjust to. 
    Anyway best of luck, 3rd time lucky hey for clear margins!
  • Harvey1903
    Harvey1903 Member Posts: 189
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    Hi guys - this is the path that I'm on.  The waiting and waiting, go on Holiday for a week but even that didn't help!  I am booked in for an MRI - it is a three week wait, which we have to pay for $600.  But I thought that it would be better knowing whats there than to have another re-excise.   It has been really helpful to follow everyone elses story and I am amazed that there are so many newly diagnosed since I came on board.  Everyone is so helpful and informative.  I would love to share my photo journey (as have @kmakm - thanks)  I don't know how you managed all that whilst in hospital.

    I am looking at having a double mastectomy and DIEP reconstruction.  Sooner rather than later.

    Thanks again everyone for sharing.  Julie.
  • kmakm
    kmakm Member Posts: 7,974
    edited June 2018
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    Hey @Harvey1903. I'm glad you've found my photo story helpful. It's good to hear as that was the idea! I love photography and am driven to record. I actually wish I'd taken more... Stay in touch, here or in the Choosing Breast Reconstruction group, and hit me up with any questions you have. K xox  :)
  • Harvey1903
    Harvey1903 Member Posts: 189
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    Thanks will definately do....   
  • Harvey1903
    Harvey1903 Member Posts: 189
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    PS  Where did  you go - I'm going to Peter Mac....
  • kmakm
    kmakm Member Posts: 7,974
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    @Harvey1903 I have PMd you.
  • kitkatb
    kitkatb Member Posts: 442
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    Hi @Nicksta like you  I am waiting for a 3rd surgery . Still recovering from my second.  This time I will be having an MRI before hand then back to the surgeon again.  My thoughts are with you. It just sucks we all have to be in this position but deep breathe and one day at a time. Even though it was upsetting at the thought of number 3  I look on it now that at least they found the DCIS now instead of 2 years down the track.  Thinking of you.  xox
  • Nicksta
    Nicksta Member Posts: 22
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    Hi kitkatb , 
    Sorry to hear you are going in for a third time too . Did you request the MRI or is it a suggestion by your surgeon . What did they find in your 2nd surgery?
      I am trying to stay positive, but as I am new to all this it can be hard at times . I had my third surgery Friday and have my next appointment with my surgeon on Friday which is when I will get my results . If the margins are not clear it becomes a whole new scenario.  I am positive but there are so many new things to consider . How long do you have to wait for your MRI .
    Best wishes to you xx 
  • nikov
    nikov Member Posts: 81
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    Hi @Niksta
    I was admitted into hospital New Years Eve 2016 so for 2 days all I had were ultrasounds and antibiotics. I had my mammogram on the 3rd of Jan 2017 and they initially diagnosed me with Inflammatory Breast Cancer. That week was just scans and biopsies. Eventually I was diagnosed with Microinvasice DCIS in my right breast. I had my right breast mastectomy (tumor 9cms) exactly 3 weeks later and they removed 7 lymph nodes. Those being all clear, I was hormone Negative and HER2+. I did my IVF treatment and straight after that I started the Zolodex and Chemo/Radio. I knew that at the back of my mind, I will always be worried with my left breast so I made an informed decision to have a prophylactic mastectomy on my left. A couple week before I was due to go in, I found a lump in my left while I was in the shower and I just burst into tears and thought "no, not again" so I quickly called my partner to come in and check, at this point I knew I had made the right decision of convincing my breast surgeon for 11 months and doing the requested psych reports and second opinions to finally get her to agree on doing my prophylactic. I think it's one of the best decisions I have ever made. I am hopefully having my exchange at the end of the year and then in 12 months I can look into nipple recon. Stay positive and be firm in making your decisions. Just remember if there's not one person out there wanting to do it, there is another person. My second opinion breast surgeon took the time read my report before seeing me and pretty much just sat down with me and told me that she agreed with me wanting to do the prophylactic so it was nice to think that I had a back-up if my breast surgeon refused to go ahead with it. Also, for anyone wondering, I am at Peter Mac in Melbourne xo
  • Nicksta
    Nicksta Member Posts: 22
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    Thanks everyone for all your feedback and comments . I went to my go nomal doctor today as my right breast makes a slushing sound . ( had my 3rd surgery last Friday ) . I went to get the breast checked and found myself sat there asking many questions . Dr said to keep an eye on it it can be normal after that amount of surgery , seeing surgeon on Friday so just to keep an eye on it . 
    My prognosis is good treatment plan is radiation and hormones once we get clear margins . We are hopeful for clear margins but have been since we did the first surgery where we were looking for a 4 mm tumour that ended up being 4 times the size plus a satellite nodule . ( these were not on my mammogramme or ultra sound . )Since then I have DCIS and margins have not been clear hence why the 3rd re excision . So what if I have a clear margin on Friday how do I know that there is not more DCIS in the rest of my breast did we just fluke the margin . I know I just need to wait for the results as margin may not be clear and then there is no question re a mastectomy . Oh boy this is the time my head starts to spin in all directions .....
    A core biopsy 3 samples and 3 surgeries in one month is taking its toll . I am in pain and just using panadol as I am a single mum and I need to function , I have a 12 year old daughter and a business so need to be able to drive and function . The Endone was keeping me too alert and made me feel sick. 
    Ok maybe now I have said it all out loud I can go to sleep .....anyone else have the slushing sound in their breast ? 
    Thanks everyone x
  • Eastmum
    Eastmum Member Posts: 495
    edited June 2018
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    Hi @Nicksta - I’m right here awake with you! Had my fourth AC chemo today and feeling well just went to sleep quite early and now I’m awake - also listening to my husband snoring away in his ‘non-snoring’ position - sigh - only one direction to go to from here and that’s towards the couch! 

    I can’t help you with the slushing sound - I’m just sending you bucket loads of good wishes and positive thoughts. You are an absolute trooper! What a traumatic time it’s been for you - 3 biopsies and 3 surgeries in a month!! Good lord that would be enough to test the patience of a saint!

    I had the same reaction to endone - absolutely hated it. I found that one panadeine forte together with one panadol or one nurofen, absolutely did the trick for me after my mastectomy. Helped me function - ask your dr. If you’re ok with codeine it works a treat. 

    Hang in there! It sounds like your surgeon is really approachable and it’s awesome to have a good prognosis and treatment plan ready. Crossing my fingers for you that you’ll get the result you’re hoping for - otherwise, if you have to go down the mastectomy road, at least you’ll know conclusively. There are so many of us here that can support you with that. 

    Lots and lots of hugs. Yvette xxx
  • Harvey1903
    Harvey1903 Member Posts: 189
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    Hi there - similar to you I have had two re-exisions, going to have an MRI today as there are still no clear margins.  Seems like it keeps getting bigger everytime they go in!  Anyhow I had the slushing sound in my boob after the second op.  Went away after about a week.  Its called a seroma.  Quite normal apparently after surgery.

    I go to BS on Friday to hopefully get my treatment plan.

    Hang in there  Julie
  • nikov
    nikov Member Posts: 81
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    Hey @Niksta I agree, with that amount of biopsies and surgeries in such a short amount, I would've lost my mind. I understand why they've done a lumpectomy but would it be worth maybe just suggesting to have a skin-sparring mastectomy so that you don't have to keep having surgeries and biopsies?