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Video re Mets BC .... EVERYONE needs to watch it



  • Milly21
    Milly21 Member Posts: 111
    Yes doctors can’t predict the future I suppose and if unknown it’s better to encourage patients to have a positive outlook. I found them being positive helpful,it helped me to move on, I try not to think about it coming back as these are the moments I feel panicked and that won’t change what will happen anyway. 
  • kezmusc
    kezmusc Member Posts: 1,544
    @Kmakm,   I just jump up and down until they give it to me to shut me up I think LOL. 

    I've never paid for a CT especially the initial staging one. Maybe they only do it if your node positive upfront,  I don't know.
    I do not trust under any circumstances the U/S and mammo on its own. With my  latest referral, to check up on the mystery MRI find, I've made them include a rescan of where the lymph nodes were and chest nodes.  I realised that in all my follow up it had only been the breasts they'd been scanning and not where most of it was......bit slow on the uptake huh? 

    The registrar  (I think she is scared off me, she kind of avoids me at work now) said "well, that part shouldn't be a problem because we took a lot out"  Sure....nope that won't cut it, so she added it on the paper work.

    If you are keen on it for peace of mind and can get yourself referred by a consultant you shouldn't have to pay.  GP referral you might.  MRI's are trickier with getting it paid for and they can pick up a lot of we don't knows but I've paid for one because I wouldn't have stopped worrying without it.
    Our  hospital has recently changed their policy  and if you are referred from outpatients clinic for follow up the hospital will pay.  So that's a big relief.  
    I got my brain ones bulk billed because my GP knew to put that I was suffering headaches on the referral.  Just have to have the right words on it.  Ridiculous...yes.

  • kmakm
    kmakm Member Posts: 7,974
    @kezmusc Thanks. Will have a rethink once I've had a chat with the CHEK2 expert.
  • primek
    primek Member Posts: 5,392
    To be honest I'd rather believe I'm likely cured than thinking I'm one of 30%. I think in reality most people with breast cancer fear it becoming metaststic. Just focusing on that though can suck the joy out of life....however long that is.
  • Kattykit
    Kattykit Member Posts: 252
    Truly I think just a mammogram and ultrasound on their own are useless mine came back in my bones, right femur both hips skull and scapula, how is a mammogram gonna find that.
  • kitkatb
    kitkatb Member Posts: 442
     So true @kezmusc and @Kattykit I'm going to follow through on an MRI when I am due for check up in June. what is the brain scan, is that just a normal cat scan.  Do I ask my Onc when I talk to him in March/April,  my surgeon ( who will look at the ultrasound and Mammogram in June ) or my BC nurse to arrange.  Not dwelling, just want to be armed with as much knowledge as possible. 
  • arpie
    arpie Member Posts: 7,276
    We have so many courageous ladies in our midst xxxx    Life is a bitch sometimes.  

    You cannot rely on mammograms and ultrasounds, alone, to dictate your fate.

    None of us asked to join this BC club.  The fees are extortionate. 

    None of us 'want to' get BC (or Mets) .... that is a 'given'!

    We all have BC of one sort or another

    Some have had Recurrence

    Some will have recurrence
    Sadly, some will get Mets

    Please - just be aware that Mets is 'on the table' - do not assume it won't happen  :(    This is not  a threat - it is reality.

    Knowledge is a weapon - and hopefully identification & medication will improve & prevent us from joining this rather exclusive club.

    Personally, I tend to look at the 70% '3/4 full glass' myself .... so I just keep on doing what I love doing!

    You should too

  • kitkatb
    kitkatb Member Posts: 442
    Well said @arpie   Here's to more fishing.  :) 
  • Kattykit
    Kattykit Member Posts: 252
    Too true @arpie life is for getting out there and living not sitting around being scared.
  • Sister
    Sister Member Posts: 4,960
    Absolutely @arpie

    One question I have for those who are more knowledgeable than I am.  Every now and then (as happened yesterday on a fb group) I read that someone's treatment has gotten rid of mets tumours (eg lungs).  Is it that they're really gone or just hiding and managed? 
  • kezmusc
    kezmusc Member Posts: 1,544
    @kitkatb The brain scain was an MRI.  I requested that because of the severe cognitive disfunction I began experiencing.  I assumed it had gone to my brain.  As it turns out it was just the lovely Tamoxifen drugs fooling around with my head and turning me into a space cadet. Grrrrr.

    Interesting question @Sister.
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    I have had 2 CT scans and all fully funded.  The first one was after I was mistakenly told it had spread when even my lymph nodes turned out to be clear.  Dont know it this made a difference or not.