I’m in a state of shock

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Well results day after op has arrived, was trying to keep as positive as possible, waited over an hour for my appointment this afternoon, then lead into a room, could hear the discussion next door and the nurse mentioned my name and said it’s going to come as a shock having more surgery, but even then I just thought the margins weren’t clear. 
My original diagnosis was grade 1 ductal carcinoma HER2 negative 9mm oestrogen positive.
My current diagnosis s grade 2  21mm lobular carcinoma with 2 other areas, one 1.5mm and one 3 mm and also DCIS low grade and LCIS, 2 nodes affected out of 4, and it’s also HER2 positive. So my initial treatment of surgery, radiotherapy and tamoxifen has now changed to surgery and auxiliary lymph node clearance, chemotherapy, herceptin, radiotherapy and tamoxifen and I have to have an MRI scan to check everywhere else and my other breast.

I feel devastated to say the least, the only positive is that they removed it all with surgery and there was a clear margin.

  • That must have been awful when you thought your treatment plan settled.  Focus on positive.  Your breast is cancer free after surgery.  The next surgery is node clearance?  I know having chemo is a big step but you will get through this.  hugs xx

  • Thanks for replying Grogg, yes trying to focus on the fact my breast is cancer free, but so difficult. Yes node clearance next after MRI, at least the MRI can check my other breast too, my head feels like it’s going to explode to be honest.

  • Oh Di154 so sorry to read this. Am sending a huge virtual hug.  Xx

  • Thanks Imarah, I need all the hugs I can get x

  • more hugs from me then.

    What a huge mental adjustment to make Pensive

  • Dear D154, so sorry to hear that, what a lot to take in and so scary, of all those chemo is probably the hardest but even that is not as bad as it's reputation, loads of us will follow you on your journey and use our experiences to help and support you, you are defo not alone, Love Ann

  • I feel like I’ve been watching a film or something and this is happening to someone else, I asked the nurse for a copy of the pathology report as it wasn’t computing with my brain, I still can’t get my head around it and I suppose I won’t for a while, I just want to curl up in a ball.  

  • It is a shock having your treatment plan changed, I went to my breast surgeon appointment after MRI scan (at the beginning) thinking I would be getting booked in for lumpectomy and they then told me they weren't happy as it was bigger than they had thought and on my chest wall so they couldn't be confident of clear margins. I had to have chemo first to shrink it, when I'd been expecting to be back to my life after I'd recovered from surgery in a few weeks' time.

    The worst wait was for the full body CT scan to check it hadn't spread anywhere, but luckily I was all clear.

    It is a shock but they now have more information so are tailoring the treatment plan to your personal cancer. You'll get through this and have your life back again, knowing they've done everything for you to help prevent it coming back.

  • FormerMember
    FormerMember

    Hi Di54

    Mine was similar started with a very small lump lobular probably needing radio only that changed to finding another lump on mri to having 53mm removed and 10 lymph nodes 1 of which was affected clear margins . Now waiting for chemo to start next week I’m absolutely terrified it totally consumes your life . It more of a mop up and I did deliberate about having it as the cancer removed but just incase any nasty little cells have drifted off as I realise radio only deals with the affected areas. I’m having my hair cut short today and even that is making me cry . Good luck with your journey it’s just all so horrible x

  • Sending more hugs from me.  We will all support you through this.  And yes yr right MRI  will check your other breast.  I did not wait long for my MRI and results, although it seems like a lifetime waiting, but yes it checked my other breast.  Lots of hugs xxx