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

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arpie
arpie Member Posts: 7,733
edited January 2019 in Metastatic breast cancer
My sister just shared this video on Facebook - this video went viral in 2015 in the USA and around the world, currently with 54,000,000+ views on Facebook alone.

Holley Kitchen passed away in January, 2016, from Mets BC, age 43.

30% of those diagnosed with 'early, treatable, non spread' BC who have been told there is NED (No Evidence of Disease) will go on to be diagnosed with Metastatic BC - whether they have had their breasts removed or not.  

Most with BC are not made aware of this possibility in consultations with their surgeon or Oncs - but you NEED TO KNOW - so that if you DO GET unexplained ACHES & PAINS in the coming years - GET CHECKED OUT!  It COULD be an indication of a problem.

https://www.youtube.com/watch?v=QDQ0FjP7J-c

And her follow up video a few weeks later - a 40% increase in awareness of Mets BC due to her earlier video.

https://www.youtube.com/watch?v=63yTZxj7FOk

An interview with Holley Kitchen re Mets BC
https://www.youtube.com/watch?v=ijN11LLteTw

There needs to be more research into Mets BC - to be able to identify it earlier & treat it better.

«134567

Comments

  • Patti J
    Patti J Member, Dragonfly Posts: 589
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    You reckon????!!!
  • kmakm
    kmakm Member Posts: 7,974
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    @arpie The BCNA says 5 - 10% of breast cancers are due to a strong family history or genetic mutations.
  • arpie
    arpie Member Posts: 7,733
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    Hmmmm  ....  Interesting, @kmakm -  So that ups it to 90-95% who have no family history or expectation of getting BC?

  • kmakm
    kmakm Member Posts: 7,974
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    @arpie One in eight women get breast cancer, so say, 12 in every 100. Of those 12, one will have a strong family history or known genetic cause. For the other 11, it will come out of the blue, ie for as yet unknown reasons.
  • Kattykit
    Kattykit Member Posts: 252
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    I actually was initially told I  had a 25 percent chance that my cancer would come back, and guess what it did, so I guess I wasn't lied to.
  • Afraser
    Afraser Member Posts: 4,390
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    Me too. I chose to look at it as a 75% chance that it wouldn't, but same figures. No family history of cancer. You're never out of the woods really. I'd be cross if I had been told I was cured, or never told about dense breasts, and then found out cancer was back and incurable. But my breasts were never dense and are now very transparent, and the language with my surgeon and oncologist had always been along the 'doing well' or 'so far so good' basis, encouraging but keeping the regular appointments! 
  • Kattykit
    Kattykit Member Posts: 252
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    I looked at it like that too Afraser until it came back,, it really is a crapshoot.
  • Afraser
    Afraser Member Posts: 4,390
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    Truly is ....I count every year as immensely lucky. As they say, there's statistics and damn lies. 75% sounds almost comforting, except for that 25% hanging around! 
  • arpie
    arpie Member Posts: 7,733
    edited January 2019
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    Yes, false negatives will always be a big worry @Aggie

    Maths was never my high point, @kmakm!   :( 

    :(   That's a real bugger, @Kattykit. That is great that you were able to access the subsidised program.
    Out of interest (and not wanting to pry) - when they told you about the 25% chance of recurrence - did you assume it was just 'regular BC recurrence'  - or were you made aware it was 'terminal Mets BC' that they were talking about?
  • kmakm
    kmakm Member Posts: 7,974
    edited January 2019
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    I am waiting to hear with interest if or how having the CHEK2 mutation affects recurrence. They may not even know. Yep @Kattykit, crapshoot is a good word for it. How are your pain levels at the moment? K xox 
  • Kattykit
    Kattykit Member Posts: 252
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    Yeah, I did know that if it came back it was for good but I tried not to let that thought intrude too often, I have a great oncologist though, she's the bomb, Very little pain from the mets, the letrozole gives me the most grief, so I feel your pain @kmakm, I've found the best thing for me is stretches before I hit the ground every morning, I actually feel pretty good most days.
  • Sister
    Sister Member Posts: 4,960
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    I'm NED but very aware that it could come back as it did for my sister (just after the 5 year clear).  At the moment, I'm focusing on the positive side of the stats but I do know that the negative side is quite big.  I'm hoping that if mine does recur, it's far enough down the track that new treatments are available.