Confused. Brave face, crumbling inside

krystel Member Posts: 4
Long story short have had a lump over 12 mth. Mammogram found nothing. Us an biopsy and
Left breast only, IDC er and pr positive, her negative +1. No special type.cribform subtype.
Done pet scan and now Mri is more extensive then they think. Want to do masectomy in 2 and a bit weeks. Told that I can't have any extenders. Ill have to wait 3 years for any sort of reconstruction.
Will be cut off. Unsure if in lymph but 5 more areas of concern showed up on Mri and no other tests.
Unsure then what to do. Is this right?
Unsure what stage I am.
Single Mum work full time. Just my income. I'm 45 daughter 8.
Feel like I'm at a loss as to what's been told to me. 
Might have chemi after. Unsure how effective it will be. Take tablets and maybe radiation.
Just getting worse and worse.
Tried to stay positive by every appointment turns out to be worse than they first thought.
Positiveness slipping away.

Previously had thyroid cancer and then neck dysection and 30 nodes removed.and Rai

Have pain in underarm and breast. Is it all related. Freaking out


  • arpie
    arpie Member Posts: 7,803
    You've had a tough time of it, @krystel .... I hope you have good friends and family support to help you thru this xx.   It is all very confusing and anxious at the start - once you have had your surgery, and have a 'game plan', hopefully you'll feel more settled xx

    Try & keep yourself busy (and away from the computer & do NOT use Dr ) doing things you LOVE doing!   Get out with friends, try new things as you wait for the surgery day xx.  Remember to be kind to yourself too xx  Cook up some meals & freeze them, so you have stuff 'ready to go' after your surgery.

    Check out this post ... there are lots of 'other areas' on the forum that may take your interest ..... show us your gardens, your furkids, art & craft ..... and check out the 'funny bits' as well, as we all need a laugh now & then! xx. 
    At the bottom of the post are some downloadable docs on self assessing yourself, both physically and mentally .... print them off & keep a copy for your team to check out as well!   (Sometimes it is easier to give it to them to read, than to talk about it with them. xx) 

    Also - consider ringing our helpline on 1800 500 258  to have a chat .... your team should also be able to refer you to a psych for a chat as well if you'd prefer that. In the mean time - click on this link and listen to Charlotte Tottman's podcasts on everything 'BC' related .... she is a BC specialist psychologist who was diagnosed in 2018 and had a double mastectomy (choosing to remain flat.)  So she really 'gets it', more than others who haven't experienced it themselves.  Below is her story in PDF form.  And the podcast link is here: tottman
    Make sure you Click on 'view 22 tracks' and start with No 13 (which is the first episode of Series One - weird that they've put Series 2 'first'!)   They are really good as she talks more as a BC survivor, not a Psychologist - and they are very easy to listen to!

    Take care & all the best xx
  • krystel
    krystel Member Posts: 4
  • Julez1958
    Julez1958 Member Posts: 1,177
    Hi @krystel
    Totally agree with what’s said above.
    I found the Dr Charlotte Tottman podcasts very helpful .
    I also had a couple of sessions with a psychologist specialising in cancer related distress and that helped too.
    One thing she said was “ it’s ok to cry” - I did a lot of crying in those first few weeks and at the most random times - supermarket checkout, Doctors waiting rooms , you name it!
    I liken the diagnosis to a death - it’s the death of your formerly bulletproof self, and like all grief you just have to give  it time .
    Take care 🌺

  • jennyss
    jennyss Member Posts: 2,006
    Dear @krystel,

    from jennyss in Western NSW
  • Afraser
    Afraser Member Posts: 4,392
    If at all possible, take someone you trust to your next appointment to help you get some answers to all your perfectly reasonable questions. Any diagnosis is shocking and hard to come to terms with. And the terms used by medical specialists, with the best of intentions, can be confusing and difficult to understand, at least at first. Make a list of things you want and need to know. Best wishes.