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



  • MeganM
    MeganM Member Posts: 60
    At the 5 year mark when I thought I was “cured” my oncologist said I had a 50% chance of reoccurrence. So every day has been acknowledged but still at 10 years it was a shock to hear the “metastatic” diagnosis.
    Never have I heard 30% of all BCS will become metastatic and no one suggested regular blood testing without symptoms to me.
    I for one will be advocating regular blood and other tests for my “pink” mates.
  • Brenda5
    Brenda5 Member Posts: 2,423
    edited January 2019
    I guess this sort research is where the funds raised end up. Mind you at $950 to get an interstate test done its a lot of money for me but I will ask my oncologist about it when I next see him.
  • arpie
    arpie Member Posts: 7,801
    edited January 2019
    WOW!   @Brenda5  Good find!!   How did you learn about this one?   I've never head of this trial ...... I will definitely mention this to my surgeon on my 1st review on Tuesday!  

    How wonderful if it was available cheaper & back when you are first diagnosed?  Then there is something to compare it with, after surgery & any active treatment is completed.

    I can see this being a wonderful test for ALL cancer sufferers!

    Apparently, only a tiny amount of the the BC research money is used specifically on Mets (in the USA it is about 7% of what is raised, spent on Mets.)   :(  This really needs to be addressed.  

    I wonder how long our pathology samples are kept before big biffed?  Most medical records only need to be kept for 7 years (I went looking for Keith's Specialist allergy tests at Westmead, to find it they were biffed 6 months ago.  :(  )    

    If someone is diagnosed with mets further down the line, the researchers would really need access to the original tissue as well as the Mets tissue, to compare the changes ..... and it could be way more than 7 years before being 'needed'?
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    @arpie. I think you will find that the amount spent on metastatic breast cancer research in the USA is more like 2%. 
     I have been following these posts with interest. For me, it is just rehashing what I  have been reading about since my mets diagnosis. 
    I haven't spent the last 16 years worrying about whether my cancer was going to come back. I have a life to live.
    Now that I  do have mets I don't want to spend my time complaining about every little ache and pain that might happen to me. 
    Sure, there are people on this forum who have serious illnesses. I get that. But, stop whinging! Tomorrow is Australia Day. Be grateful you are alive!

  • Brenda5
    Brenda5 Member Posts: 2,423
    edited January 2019
    @arpie there is info on storage in this link. https://www.bcna.org.au/media/2140/breast_cancer_pathology_fact_sheet_0.pdf
    I thought my bc nurse said they store them for like 25 years or something? I vaguely remember signing paperwork for them keeping and owning my breast when I had the mastectomy.
    There is also a bc tissue bank https://www.abctb.org.au/abctbNew2/default.aspx
  • arpie
    arpie Member Posts: 7,801
    edited January 2019
    That is VERY interesting, @Brenda5 - if offered this 'breast tissue saving' option prior to surgery, I reckon I would have said 'yes'!

    Whilst quite a few of the NSW collection centres aren't currently open - there are some in NSW that are currently taking tissue samples - including North Shore Hospital & John Hunter & Liverpool ..... 

    Also just knowing that your own Breast Tissue & blood samples may assist in future research - is a WIN/WIN situation!!
  • Sister
    Sister Member Posts: 4,960
    As far as I know, there is a "Cancer Bank" - I'm not sure if it's in every state.
  • Romla
    Romla Member Posts: 2,092
    I have had pain in my right elbow for about 3 weeks now for no discernible reason . I went to GP and had an X-ray which came back clear.Guess you know why I went - any new unexplainable issue brings up anxiety and that was BEFORE I watched the video above.

    I need to ask some dumb questions probably .What exactly does Mets mean ? I thought as I didn’t have it at diagnosis it was a bullet I had dodged . Here am I doing my best to prevent recurrence and I didn’t even consider this down the track.What are the signs of Mets ? What treatment is available for Mets ? I read above someone has Mets but they are stable - what does that mean for our ( bad choice of words) longevity ?

    I don’t want to depress either myself or anyone else  and I agree with all the sentiment about living life to the fullest but really think this topic should be discussed more on the main blog page and not just tucked away in a group as sounds like 1 in 3 of us may be effected at some stage.

    Should we talk about this in more detail ?As awful / awkward as it may be it won’t go away by ignoring it and maybe if we had a bit more knowledge/ awareness about it it may help not only ourselves but maybe encourage more research ??? I for one admit to being somewhat bedazzled by bc survival rates as no doubt the community is but with Mets in the equation that’s a different story that needs telling and widely.
  • Mira
    Mira Member Posts: 678
    edited January 2019
    If anyone is on facebook, check out the "Breast Cancer?  But Doctor...I Hate Pink!" page  She's been having Mets Mondays where she posts the story of people who have had mets for at least 5 years.  :smile:
  • Afraser
    Afraser Member Posts: 4,392
    Mets is simply short for metastasis, the development of secondary cancers at some distance from the primary source. As far as I know, this is different from a new, totally unrelated cancer occurring after the first, which of course can also happen. Some people already have metastasis when first diagnosed, unfortunately. This video is about the percentage of those diagnosed with a primary cancer, but whose cancer metastasises at a later date (sooner or later). Beyond the recommended treatment and as healthy a lifestyle as possible, I don't know how metastasis can be prevented and assume that if there are any sure fire precautions we would know! But I also don't know if I will be in a car accident next month, or if an embolism is forming! Like @melclarity, I will do everything I am asked and feel is sensible, but I still have a life to live. And as we know, from the many people on this site, there can be a life after a mets diagnosis too. 
  • iserbrown
    iserbrown Member Posts: 5,604
    Wise words from @melclarity
    This post, an awareness thread has made some of us very concerned.
    My Oncologist visits were 6 monthly but with the body rejecting and adjusting to the aromatose inhibitors I'm on 3 monthly visits until the body settles into the new routine.
    Some cynics on here have poohooed Oncologist visits as a money grab and to that I say each to their own. I know I am being monitored constantly and at times I long for life before BC but what I  am confident in is that my team are guiding me towards a life after BC.
    Awareness is a good time thing but there's no point dwelling rather living for now and let my team guide towards life after BC!

    Take care
  • arpie
    arpie Member Posts: 7,801
    That is terrific, @iserbrown that your Onc is being so proactive in your ongoing treatment.  I hope my 'new' medical Onc is as on the ball like yours, as my original medical Onc didn't give a stuff!  :(  

    @Romla  - good questions & good on you for getting that elbow checked out.  I have 3 close friends with mets  - one from BC, one Prostate & one Bowel Cancer.   One has it in her ribs, the other two, in spine and/or liver.

    BCNA has good info sheets here:

    I thought as I didn’t have it at diagnosis it was a bullet I had dodged . Here am I doing my best to prevent recurrence and I didn’t even consider this down the track.  
    And this is why I put the thread up - as an 'awareness' thing.  I was made aware of it last year by a forum member, even tho mine was 'found early, removed, not spread, and had rads & tabs'.  It was a wake up call for me.  

    What are the signs of Mets?    
    Prior to being diagnosed with Mets, they experienced unexplained, persistent pain in their back & ribs (for years in one case) prompting X-rays, CT & PET scans.   Sadly, there is no cure, yet. But there is ongoing treatment that helps relieve the symptoms.

    What exactly does Mets BC mean ?   
    Mets BC is when Breast Cancer cells move to other areas of the body & grow (e.g. lungs, liver, bones & brain)  - so even tho it is 'in the lung' - it is treated as Breast Cancer, not 'Lung Cancer'. 

    What treatment is available for Mets ?   
    As I understand it, Treatment is usually chemo and/or radiation (less so) and pain control. The plan is to stabilise the Mets or shrink them.  

     I read above someone has Mets but they are stable - What does that mean for our ( bad choice of words) longevity ?   
    People can lead productive lives with Mets for 10 years +.   Every advance in research hopes to extend this.

    Leaving the thread here would be the way to go, I reckon.  About 1000 have read it already.