Further diagnosis details following surgeon meeting - gd 2-3 DCIS/IDC

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Prime time
Prime time Member Posts: 19 ✭
edited June 2018 in Newly diagnosed

So met the surgeon today and have a bit more of a clearer diagnosis..

Not given me a stage as I have to have CT scan and bone scan Wednesday and blood tests to check it’s not spread past lymph nodes ( another anxious wait where every ache I’m convinced the worst)

But it’s a 3.5cm lump on ultrasound but surgeon says around 4cm. Grade 2-3 combination of DCIS/IDC.

 ER - PR- Her 2 +

Surgery booked for 02/07/18 - mastectomy with immediate implant recon and axillary node clearance ,then chemo with Herceptin and possible radiotherapy after. 

I was upset about this and hasn’t really prepared for the mastectomy word as was hoping I could have a lumpectomy but trust my surgeon 

I dont really know what any of it really means even though I’ve spent 2.5 hrs there with them...not sure I was in the frame of mind as just kept giving me so much information 

Meeting surgeon again Thursday to go through CT/bone scan results....hoping they come back ok if anyone has similar to me I’d appreciate some comments or thoughts 

Thanks in advance xoxo

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  • Eastmum
    Eastmum Member Posts: 495 ✭
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    Hi @Prime time - it’s such a whirlwind of information at those first appointments and it’s so hard to take it all in, especially if what they’re telling you isn’t exactly what you were hoping to hear. 

    The most important thing is to have faith in your medical team - then, it’s absolutely essential that you feel well informed and confident that you know exactly what your diagnosis is, what they’ve recommended, and why. 

    Make sure you arm yourself with a long list of all your questions when you go back on Thursday. Include absolutely everything you want to know - there is no stupid or useless question - and the surgeons are used to being asked lists of questions. Take someone with you if you can, or record it all on your phone or take notes. Just make sure that when you leave, you feel 100% well informed. 

    I was so worried before my staging scans! I convinced myself that my persistant cough, my aching knee and my headaches were all signs that my breast cancer had spread. Ultimately everything came back clear - I was lucky - but the scan-xiety drove me nuts! It’s so hard not to dwell on it - but a very wise friend once advised me ‘not to write the story before it happens’ and I’ve tried to just take one step at a time and go with the flow. 

    No matter what your results will reveal, the anticipation is always the worst part. Once you have a plan, you feel much more in control and can move forward. 

    My breast cancer was bilateral invasive lobular carcinoma and very big - 10cm in one side, 16cm in the other. I had a full acillary clearance on one side with 2 nodes involved. I wasn't able to have an immediate recon after my double mastectomy because I was always gong to need radiation, and my plastic surgeon didn’t want the recon to be compromised, so I’ve been given air expanders for exchange or DIEP surgery down the track, after I finish chemo and radio. 

    Best of luck for all your results! Please keep us updated xxx
  • Sister
    Sister Member Posts: 4,960 ✭
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    It is too much to take in and as @Eastmum said, take a list of questions and if you can, someone with you who is calm and good at picking up on things.  Also ask if you can contact the surgeon by email (or other) if there is something you have forgotten or are unclear about.
  • arpie
    arpie Member Posts: 7,584 ✭
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    All the best with your scans etc, @Prime time

    You now have a pretty good idea of what is ahead now - It is all still very confronting and a tad scary and spooky ..... is there any chance you can have a Breast Care nurse with you in any of your meetings as well as a family member - so that you can also contact them with the slightest query that you may have?  

    One step at a time, deep breaths, try & keep busy in the meantime and all the best xxx
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952 ✭
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    @Prime time so much to take in.  Hope all goes well on Thursday xo

  • iserbrown
    iserbrown Member Posts: 5,552 ✭
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    @Prime time 

    I do hope your appointment yesterday gave more clarity.  

    When you're up to researching try this link
    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

    It will also give you the opportunity to look around the BCNA website as there is a wealth of information

    As to your surgery date this link and list of what to pack for hospital may help you

    https://www.reclaimyourcurves.org.au/preparing-for-surgery-and-recovery.html

    https://www.reclaimyourcurves.org.au/information-sheets.html


    There's always someone on the forum any time of day or night if you need to come on and natter or vent or seek information

    Take care and wishing you all the best


  • Prime time
    Prime time Member Posts: 19 ✭
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    Thanks all
  • Eastmum
    Eastmum Member Posts: 495 ✭
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    Hi @Prime time - hoping that your appointment went well yesterday and that your breast surgeon was able to answer all your questions. xx
  • onemargie
    onemargie Member Posts: 1,264 ✭
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    Hi there @Prime time. Make sure you stay engaged with us if you want too. Get your head around things and keep us posted. We are all here for you. Big hug. Margie.  Xx
  • primek
    primek Member Posts: 5,392 ✭
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    Well it's great there is targeted therapy for your cancer and I believe a new trial also for a tablet version after the 12 months is available for some so do ask about that it's called lapatinib.

    It's standard for her2 cancers to do that  workup. I had mine pre surgery. Hope its over quickly and your on your way to treatment phase very soon. Kath x

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