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

arpie

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.

Patti J

You reckon????!!!

wendy55

Hi @arpie,
Thank you I will forward this to my McGrath Nurse and also to the moderators of the NSW Cancer Council Telephone support Group for women with metastatic breast cancer, and to my oncologist in fact to anyone that will listen to it!!!
wendy55

kmakm

I confirmed that stat with my breast surgeon last Wednesday.

I discussed it with someone yesterday who had no idea.

The 90% survival that is proudly proclaimed is glib, and lulls everyone into a false sense of security. It's 90% at five years. I don't know about you but I f*****g well want more than five years. My youngest will only be 14 at the five year mark. 10 years is 83%, but that is that stat all causes of death, or actually BC? If it's the former I'd be interested to know the actual 10 year stat.

The whining you hear from some about how BC gets all the money and publicity, is understandable because the real stats are never publicised. Recently I had a conversation with a woman heavily involved with edometriosis. I explained what a BC diagnosis entails for the rest of your life, and that it is now the most commonly diagnosed cancer in Australia and she looked genuinely shocked. She said she thought it was just about cured and that she'd thought it got too much attention and funding.

If I was designing awareness raising campaigns I include some shock factor ones, including the fact that 30% of early diagnoses will get metastatic disease. For which there is no cure. I'd also include one that explains that more young women are being diagnosed with it, that it's more aggressive in the young, and that if your GP tells you you're too young to have BC (and we've heard that more than once here), to get a new GP. I'd include vision of the ease and speed of mammograms, and that they're at 40 and if you've got no family history, to start at 45.

I get the need to give hope, but as someone whose life has been hugely affected by this disease, I'd prefer reality.

Let's stop pussy footing around this disease. It's time get a new logo and tone down the pinkwash.

One in eight women diagnosed.

Men get it too.

53 per day diagnosed.

Eight a day dying. 

arpie

Yes - we are very much kept in the dark (not unlike mushrooms - feed them shit & all that!)

In reality - it could (and well may be) one of us 'lucky ones' facing this diagnosis any time soon.

This is NOT about spreading fear - it is about spreading awareness and some honesty in the huge statistics that 30% is!  And here we are worrying about 1-5% reduction in recurrence by having radiation or AIs ...... this 30% is VERY REAL.

80% of women diagnosed with BC have NO family history of it EVER - yet 80% (my guess!!) of the advertising (and possibly research $) seems to be pointed towards women with family history.  We (the 80%) are the ones being blind sided - then 30% of THOSE 80% can and will go on to have Mets BC as well.

I am one of the hundreds of thousands who have NO family history of it - where all my mammograms have proven to b e unreliable ..... my diagnosis was a real bolt out of the blue.

Then, once you get over THAT surprise, you also find that you should be having 'other tests' as mammograms don't work well with you - ie  the Dense Breast Tissue issue ......

If women with dense breasts aren't told when they have their mammograms, they don't know that they have a much higher chance of a terminal diagnosis STRAIGHT UP than a 'caught early whilst small' diagnosis which is by far the better outcome.

If we aren't told that we have a 30% chance of a terminal disease (even within 1 year of initial diagnosis) .... we may also not investigate any abnormal aches & pains, because we are already hurting all over from all the other fucking medications that we are on, which  masks everything!

Spread the word.  It is all about education

kmakm

@arpie The BCNA says 5 - 10% of breast cancers are due to a strong family history or genetic mutations.

arpie

Hmmmm  ....  Interesting, @kmakm -  So that ups it to 90-95% who have no family history or expectation of getting BC?

kmakm

@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

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

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

I looked at it like that too Afraser until it came back,, it really is a crapshoot.

Afraser

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

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

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

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

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.