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sw2012's avatar
sw2012
Member
10 years ago

Moving forward and feeling better

After getting the call from surgeon on Wed to say they didn't get everything out last week and falling to pieces, we had my surgeon appointment yesterday and can't believe how much better I am feeling today.  Not knowing what is going on is just the worst!  When I know what's going on and what can be done, I am superwoman!  Waiting for results and appointments, I'm a basket case!

So on Wednesday, it's back to hospital for double mastectomy and level 2 lymph node clearance.  Went in to surgery knowing there was 3 lumps (1 I felt and 2 small ones found in scans), biggest one supposed to be 15mm.  Surgeon thought she got them all and believed there was nothing in the sentinel node.  Pathology showed very different - 2x small Stage 1 lumps, 2x stage 2 lumps (one 28mm) and one 47mm DCIS - where the hell was that hiding!!  No-one was expecting that!!  Still wondering if it was a typo!  Surgeon says 1 in 5 women get back results like this - tumors that don't appear on any scans, etc, even she didn't know it was there when she took it out!!  Anyone else had anything like this???  And 10mm was in Sentinel node too so more work needed there too.  Good margins on all though.

So not messing around this time, I thought I'd have double mast. the first time around and decided not to, this time nothing is changing my mind - it's both off.  I'm flat chested anyway, not like I'll notice much!!  After that, chemo, possibly radiation, whatever else they throw at me, then reconstruction once I'm better.  A new me before I know it! A bit of crap to go through to last another 50 years!

Thanks for all the messages for support, can't believe how much it helps.  Sorry I've not commented on anyone else yet, focusing on me and my family, but knowing there is this support online is wonderful. 

much love and hugs to all the amazing women (and men) out there

dx

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  • airlie's avatar
    airlie
    Member
    10 years ago

    Hi Narelle

    2/28 came back cancer Could've been higher. 

    It all just sucks. 

    Let me know how you get on with your results. 

    It's bloody agony waiting.

    Hugs Airlie ?? 

  • primek's avatar
    primek
    Member
    10 years ago

    It feeks so good to make the decision. Hope all goes well. Kath x

  • narwoo's avatar
    narwoo
    Member
    10 years ago

    Hi Airlie

    I am not sure what to make of the grade 3 diagnosis. The tumours are grade 3 but I am not sure what stage my cancer is as that is different again. It was scary when the Registrar said the 3 mutifocal tumours were an aggressive type as the core biopsy's had said they weren't ( stage 2). Together the invasive tumours add up to 2.4mm so still relatively small and hopefully highly treatable. I am more concerned about the 3 involved lymph nodes. I know this is serious but I am not sure exactly how serious yet. Details about Chemo hasn't been discussed yet as I am having a mastectomy first. They gave me a choice and I opted for surgery as there may be some cancer left in my breast and I just want it all out.

    Airlie so you know how many of your nodes are involved? I think that info is a game changer. 

    Take care  xx Narelle 

  • airlie's avatar
    airlie
    Member
    10 years ago

    H Narelle, 

    I have to laugh with you. I did say to the surgeon " are you sure ". 

    Guessing they have that happen a lot.

    How are you coping with the higher grade diagnosis??

    Do you know yet what chemo or length of time your chemo will be.

    Keep in touch. Would love to hear from you and give you any support. May not be a lot, but when I found other ladies suffer similar efffects it made me more at ease to deal with chemo and the unknown

    Hugs Airlie ?? ?? 

  • narwoo's avatar
    narwoo
    Member
    10 years ago

    Hi Airlie

    Thanks for your support. I am thinking WTF as well.

    It is unbelievable how quickly the information changes suddenly even with all the scanning and biopsies pre-surgery that they can still miss important info like one a whole tumour.  My initial small tumour 10mm was found on a screening mammogram and for several weeks after was told no lymph nodes were involved and the biopsy said it was low grade. Wondering if the lab mixed up my results with someone else now. ( I know they didn't). 

    Narelle

  • Anonymous's avatar
    Anonymous
    10 years ago

    What a lot you have dealt with, it's huge and like being in a fog for most of us. You have a wonderful clarity of mind and strength of a lion. Just take it 1 treatment, appointment or surgery at a time and it will pass. Best wishes to you for a speedy recovery from your surgery. Keep checking in with us, cuddles, Trace ????????

  • airlie's avatar
    airlie
    Member
    10 years ago

    Hi Narelle. 

    A lot to get your head around isn't it. I can understand what you are going through.

    My story is similar. First diagnosis was good and low grade. However double mastectomy, cancer in nodes. All of a sudden I went to stage 3 grade 3. 

    We all went into shock and disbelief. Same thing too. Tumour went from 1cm to 4.5 cm. WTF. 

    Takes time to digest the news and come to terms with a different diagnosis. 

    Thinking of you and wishing you speedy recovery with your op.

    Stay in touch we are all here for support

    Airlie ?? ?? 

  • narwoo's avatar
    narwoo
    Member
    10 years ago

    Hi

    I have a similar story.

    I also got my results back on Friday after my lumpectomy and level 2 axillary clearance on 28/4.  Prior to surgery and since Feb, I was told I had one small 10 mm invasive ductal carcinoma and one 5 mm high grade DCIS in the same quadrant.  After surgery they now tell me they found 2 invasive ductal tumours ( 16 mm and 6 mm), The DCIS is also now 40 mm. I am also wondering if that is a typo. How does it grow from 5 mm to 40 !!.  Unfortunately the margins are not clear and there seems to be more suspicious areas left behind so now have to have a left mastectomy. 

    I was told prior to surgery after the MRI and needle biopsy the cancer was in 1 lymph node but after surgery they say they have found cancer in 3 nodes and micro-cancers in another 2 more. So I now need to have Chemo. 

    I am told the cancers is stage 3, very aggressive and ER neg. Still waiting for HER2 results

    I had had every scan know to man, 6 core biopsy, full body bone scan, CT x 2,  MRI x2 , even a liver MRI as they found 2 suspicious lesions in my liver and yet all along one invasive cancer was hiding all this time. The surgeon said it was an unexpected finding. < really>,  They don't want to do a biopsy on the liver due to the risk of bleeding and a MRI was inconclusive so don't know what that means. Doc couldn't really give me any more info about prognosis etc and he wants to wait until after the next surgery to say anymore. They were taking about a red cell scan re liver lesions.

    Completely overwhelmed atm and my head is spinning. 

    Narelle

     

    I