Garvans Annual Breast Cancer Research Update Thursday 21 March 2019

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  • Glemmis
    Glemmis Member Posts: 343 ✭
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    Thanks very much @Giovanna_BCNA
  • mum2jj
    mum2jj Member Posts: 4,330 ✭
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    @kmakm, whilst I too would love to meet you I actually meant I’d love to hear about the day as I live way to far away to got to it. Sorry if I confused you. 
    One day?
    paula x
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @mum2jj No worries.
  • arpie
    arpie Member Posts: 7,586 ✭
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    All the best for your surgery, @glemmis   xx
  • Jane221
    Jane221 Member Posts: 1,195 ✭
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    @kmakm, I've finally registered so hope to see you there :smile:
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Jane221 Excellent!
  • Jax1964
    Jax1964 Member Posts: 76 ✭
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    I've registered too
  • Jackie50
    Jackie50 Member Posts: 44
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    @kmakm I'm new aftrr a 5 year break sadly...now joining the metastatic group. I'm not well enough to go due to treatment, will it be on here as a podcast???
  • Annski
    Annski Member Posts: 112 ✭
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    Hullo @Jackie50, we haven't been in touch before but I just wanted to say how sorry I am to hear about you going metastatic after 5 years ... I have been trying to get the latest scientific research-based information about rates of metastasis and average times but so much depends on treatments and variabilities in diagnosis and pathology. May I ask if you were on Femara/Letrozole or Tamoxifen during the whole of that time? The statistics are awfully confusing about this. Many people cite around 30% recurrence even for people on Letrozole/Tamoxifen over five years, another set of recent reports suggested a 90+% success over five years. Obviously this is a big difference, and with the side effects issue being so important it really seems we need to know the likely outcomes before deciding to stay on or go off these drugs which the BC fraternity is increasingly relying on. Of course everyone is different and every BC story is different but still I have confidence that statistics are a kind of guide.

    This issue is one of the main reasons I was hoping to get to the Garvan Institute Research update on this Thursday. However I am not sure if I will be able to make it ... As far as I know, the BCNA is not going to be there or to make a recording or a podcast of the event. I think people have been counting on Kate (kmakm) to report back, and there are a couple of others who might be able to contribute. If I manage to be there, I will certainly be willing to give some kind of an update. Meanwhile, take care in every way possible and we will be thinking of you.
  • Annski
    Annski Member Posts: 112 ✭
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    Further to the above, Jackie I am sorry I don't know your original diagnosis and I do know that the Letrozole treatment is only for people who are e+, so maybe you are not in that category anyway. I don't mean to be intrusive, my sincere apologies.
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    Hi @Jackie50. As @Annski said, I don't believe BCNA are attending.

    I'm in Melbourne but am houseminding/dog & guinea pig sitting in Sydney for a few days. The Garvan thing just popped up at the right time for me to attend. I haven't been to anything like this before but I will take notes and report back here as best as I am able.

    I hope treatment is treating you kindly. K xox
  • Jackie50
    Jackie50 Member Posts: 44
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    @Annski thank you Anski for your kind words. I was on tamoxifen for 5 years...hormone positive breast cancer back then. Mets out of blue , brain & liver. Very slight symptoms, felt well. 
    Been told since that 1 in 3 chance of Mets after having bc which I certainly had no idea it was so high & was shocked. 
    I did the pink lady in Melb last year & BCNA conf too. Wonderful info about living well after bc but no info about approximate statistics of Mets occurrence etc. Stage 4 needs more research I truly believe. My oncologist said for me the cancer was back with avengence. And said with bc it can just sneak up on you again.
    That's why the Garvan institute talk would be very interesting to hear especially about the work being done on Stage 4 Bc.
  • Glemmis
    Glemmis Member Posts: 343 ✭
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    Hello ladies @kmakm, @Jane221, @Jax1964. It seems there are 4 of us going on Thursday. Would you like to meet there & we can sit together?
  • Jax1964
    Jax1964 Member Posts: 76 ✭
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    Glemmis said:

    Hello ladies @kmakm, @Jane221, @Jax1964. It seems there are 4 of us going on Thursday. Would you like to meet there & we can sit together?

    Sure... I'll be the one with the white motorcycle helmet and red jacket :-)
  • Annski
    Annski Member Posts: 112 ✭
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    Hullo all I am hoping to be there and have registered but not absolutely sure I can make it but if so will look out for you - thought I might wear my Howlers T-shirt ... 

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