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



  • arpie
    arpie Member Posts: 7,276
    Double bugger, @Kattykit ... I think we all hear the 'recurrence' word often enough even from our very first appointment with the surgeon once diagnosed - but to be honest, I just thought it related to 'regular BC' not Mets.

    I don't recall actually hearing the Mets word (or even being aware of it as an advanced cancer condition) until many months later ... and it was driven home to me when one of my Uke ladies was diagnosed with it mid last year (after months of a niggling rib pain and 15 years after her surgery & treatment.) Then a wonderfully fit offshore kayak fishing buddy who's had back pain for years was diagnosed straight up with it (his was from undiagnosed prostate) - and he had all the checks regularly - both bloods and 'finger'!  His prostate never enlarged until his PSA went off the scale this time last year. Sadly, he is too far along for any treatment other than pain control.  :(   But he is still getting out there on the water, chasing those big fish.  I will be joining him in Feb at South West Rocks!

    oh dear, that's a wake up call, @Aggie

    Absolutely, @Sister - as do we all! It is best just to get on with your life - but also the need be aware of following up on any changes to your body, unspecified pain, in particular.

    2 sisters in law's mums are in their 90s and had their BC surgery/treatment 30 years ago.  I also have several friends who are 15 years on without recurrence of BC (tho have had brushes with other Cancers with good results.)  And of course, my husband, Keith with his stomach cancer - 5% are lucky to get past the 5 year clear mark with the one he had - and he is now nearly 9 years ..... Bryce Courtenay (the writer) being one who didn't make it.

    The real bugger is that our bodies are currently getting 'conditioned to continuous pain' as the medication we are on GIVES it to us in big doses - so it could already be masking pain from possible Mets.  We just need to be very aware - and act on any suspicion of unusual symptoms, quickly.  

    Take care, be aware xx

  • kmakm
    kmakm Member Posts: 7,974
    @Kattykit Oh that's good to hear. Where abouts in Oz are you?
  • Kattykit
    Kattykit Member Posts: 252
    @kmakm I'm in WA, not that far from JJ770
  • Milly21
    Milly21 Member Posts: 111
    I think as I finished treatment nearly 2 years ago ,I’ve been very naive,I really struggled at start being positive but because time has passed I thinking I’m done with cancer,I didn’t know 30 percent becomes Mets,I thought there was much less chance than that, that’s very depressing indeed and terrifying.
  • Milly21
    Milly21 Member Posts: 111
    Doctors never said that,they always act like it’s finished with 
  • Vallerina
    Vallerina Member Posts: 183
    Thanks @Afraser for ur grounded response. Personally i find 
    Being told ive got a much greater chance of dying than i thought isnt  particularly helpful  to me . My Glass is 70% full.
  • iserbrown
    iserbrown Member Posts: 5,441

    Milly21 said:

    I think as I finished treatment nearly 2 years ago.......
    I didn’t know 30 percent becomes Mets,I thought there was much less chance than that, that’s very depressing indeed and terrifying.

    I'm sure this post was not meant to  put you in a tailspin. I get it!  I do understand your concern as I was less than happy when I read this post.
    Not everyone equates to whatever % and some are fortunate enough to sail through. Others have family history and as my GP reminded me recently you can't run away from your genes (not BC related comment for me).

    For me, I met my breast surgeon at Breastscreen. He delivered the diagnosis and I had quite an audience,  husband, counsellor, nurse and others. Amongst his comments were you will be my patient for the next 10 years. I was astounded by that comment but needed to keep up with the diagnosis. 
    Upon reflection I understand the 10 years as I'm in it and collected both a medical and gynaecology oncologist along the way as well as now on my third set of aromatose inhibitors. 
    I haven't been given a % nor  NED.
    I'm in the middle of it and following instruction to hope that METs doesn't turn ip. My Mum had METs. Is it in the genes or is it just how it will unfold. Who knows!  At present I'm in a world of pain but that's outside of BC.
    Be confident that you've given it your best shot.  Look after yourself 

    Take care 
  • kitkatb
    kitkatb Member Posts: 442
    So sorry to hear that @maggie14  we so have to be our own advocate in this shit fest of a disease.   So often we are questioned or advised by the powers that be of what might be in our best interest.  I have total faith in my oncologist but for someone whose mother picked up mets in the brain and lung from BC i have very definite concerns about future checkups.  I just don't feel that an ultrasound and mammogram for my one boob is going to cut the mustard.  Will have to have that discussion with Onc and GP I guess.
    I was like you @kezmusc I was advised that treatment would lessen the chance of recurrence.  Sometimes the Doctors are put between a rock and a hard place.   My sister when she was advised she had stage 4 inoperable double hit non hodgkins  got advised,  "  I'm thinking that possibly your cancer is not conducive to living "  Took her a while for that to sink in and then WTF !!  ( luckily she's still out there walking 5 km a day and enjoying life and working )  albeit been to hell and back. 
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    @kezmusc - well said xo
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    This just brought a tear to my eye when I was watching it at work  :'(
  • kmakm
    kmakm Member Posts: 7,974
    edited January 2019
    I found out about the 30% stat on this forum several months ago. I'm glad I wasn't told it at the start. My breast surgeon has never said cured. At our first meeting, the diagnosis, I said I needed 10 years to get the kids raised. He said he'd get me that.

    No CT or MRI for me. I didn't qualify for the subsidised one, and neither my BS or Oncologist were keen. I'm still in two minds about these scans.

    Like everyone, I've done/am doing what I can, crossing my fingers and hoping for the best. And if along the way I can use my experience to help, to raise awareness and raise money for a cure, I'd like to.