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-cAnd 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=63yTZxj7FOkAn interview with Holley Kitchen re Mets BChttps://www.youtube.com/watch?v=ijN11LLteTwThere needs to be more research into Mets BC - to be able to identify it earlier & treat it better.

I saw this video awhile ago, it is confronting how could it not be? I've been in the system about 14yrs, but strangely it took about 4yrs and at a routine mammo I had DCIS? hmmm really? that's a coincidence I thought. Even with aggressive treatment for DCIS I had a recurrence at the 4yr mark, same spot in the scar tissue...ridiculous really. This was stage 2, grade 3 aggressive, so chemo and tamoxifen was thrown in the bin by my Oncologist lol as he said it doesnt work in a third of cases as it has learned to adapt. Unlucky?? who knows apparently. So now Im 8 years from 1st diagnosis, a year post treatment I had a single mastectomy after genetic testing was negative because only 5% is BRCA1 or 2, mind you they havent identified the millions of other mutations yet...I've only ever had a mammo and U/sound, never in 8 yrs an MRI, its always been successful for me picking anything up. Do I think of another recurrence??? NOPE...but not through ignorance but why?? and do I think about the possibility of METS??? NOPE...why??? because I will miss every single moment of my life right now worrying about something I cannot control. Not everyone gets Mets, my Mum was 25yrs from BC and died from an unrelated cancer at 66. She didnt have mets, I have known of friends who have had after 10-15yrs. So really, every year is a blessing and I just live. I am currently 4yrs clear 2nd diagnosis and I didnt get that far last time, so I am NED all clear and I dont look at it any other way. If it ever happened again, what can I do.So ladies dont get hung up on the maybes, because you will miss the precious moments of your life right now, and that is all that matters, the past has gone, the future isnt here....we only have NOW! Live Live Live however that looks for you..x

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.

Maybe doctors don't want to scare the utter living shit out of everyone when they are about to undergo surgery, chemo rads etc. I guess it depends on where it's at when it's found as to what statistics they decide to tell the person they are treating and how much value they put in what ever studies arrived at that figure.I was never told they were going to cure it. Only that the treatments would lessen the chance of recurrence, no guarantees. The M word was only my original pathology and it didn't take a rocket scientist to work out that wasn't good and put me in a high chance of recurrence group. Plus working where I do as soon as I saw it I damn near peed my pants. I don't think it would do anyone any good to have those figures thrown at them at the start. Most people will go home and dr google as soon as they find out, whether that's a good or bad thing, we all do it so you pretty much know the reality up front.The one thing I was annoyed with is that I assumed once the initial whole body CT was done and clear (my god how terrifying are waiting for those results) all was good.My BS brought me back to reality when he informed me that the CT can't pick up anything that's not big enough to see yet. So I need to viligant forever. Didn't think about that. I am not naive enough to think that with that amount of spread already that chemo zapped every single one of those little nasty cells. However, I hope it did. It's in hindsight, now that we know more that we read different things into what we were told at the beginning.I disagree with changing logos and toning down the pink, add to it yes, but we have come way too far with that pink to change it. Everybody knows what it means. You see that pink and think breast cancer donations, I've seen it in action so many times at random events, supermarkets, pubs, clubs etc.People see the pink and run over with their money to buy whatever it is, to help, to do their bit and give a few bucks. Even though they may know very little about the reality and hopefully will never need to it's still donations to go wherever the powers that be think it should go. That pink raised $38,500 on one day, at one beach in 5 hours.Hope is probably the only emotion that can override fear. The fear of chemo and surgery overridden by the the hope that it works. We hope the treatments do what they are designed to do and this goes for all stages of any cancer. We hope the treatments are getting better, more effective and that new ones are found with less side effects. Scientist hope they can eventually find out what causes it and what kills it for good.xoxoxoxo

Hi @Sister a Metastatic diagnosis is forever ... some after starting treatment have a reduction or disappearance of active cancer sites so we can be classed as NEAD (no evidence of active disease) or NED (no evidence of disease) Australian medicos tend not to use these terms but some women on the US site bc org write their status ..so for me at present I am NEAD I have stable lung mets.What ever the cancer diagnosis we are responsible for coordinating our checkups and need to be vigilant All the bestBright in hope

I just had my final? (at least for now) appointment with my psychologist. At the moment, I'm in a relatively calm place and described it to her as it's as if I can see bc now in my peripheral vision - it's still there, just not right in front of me, blocking everything else. Do I believe that it's gone forever?..I honestly don't know but I have to live almost like I do.

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

92 Replies

Brenda5
Member
7 years ago
@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
Member
7 years ago
This thread is NOT about whinging @"Patti J" - it is about awareness
Patti_J
Member
7 years ago
@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!
arpie
Member
7 years ago
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'?
melclarity
Member
7 years ago
I do remember my first couple of visits post treatment with my Oncologist, he said he's not worried about a recurrence of Breast Cancer at all, he's watching for a secondary. Hard to hear?? you bet, was I annoyed?? yep!! but that's his job?? isn't it? He also said the reality of it is this, they will NOT do constant tests because we havent advanced enough to detect BC before it is actually there. That's why they only will do a scan if you have a complaint out of the normal. They are only as good as picking up when BC is already present, which sucks! So it's evident they have a very long way to go. I just know anyone Ive ever known to have been through BC be it early or Metastatic are the most courageous people I know! Don't underestimate the power of the human spirit.

I lost a dear friend to Mets last year, it was hard on so many levels, I'm not arrogant enough to ever feel this won't be me...the truth is I don't know and neither does anyone else. I'm living a good life, and no all the great diet and exercise in the world won't change a thing if I too face this.

Just keep praying we start to advance alot more than where we are to finally kick this shit of a disease!!!

Hugs everyone! xoxoxo
Brenda5
Member
7 years ago
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.
https://www.niim.com.au/research/circulating-tumour-cells-ctc-trial
MeganM
Member
7 years ago
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.
melclarity
Member
7 years ago
I saw this video awhile ago, it is confronting how could it not be? I've been in the system about 14yrs, but strangely it took about 4yrs and at a routine mammo I had DCIS? hmmm really? that's a coincidence I thought. Even with aggressive treatment for DCIS I had a recurrence at the 4yr mark, same spot in the scar tissue...ridiculous really. This was stage 2, grade 3 aggressive, so chemo and tamoxifen was thrown in the bin by my Oncologist lol as he said it doesnt work in a third of cases as it has learned to adapt. Unlucky?? who knows apparently. So now Im 8 years from 1st diagnosis, a year post treatment I had a single mastectomy after genetic testing was negative because only 5% is BRCA1 or 2, mind you they havent identified the millions of other mutations yet...

I've only ever had a mammo and U/sound, never in 8 yrs an MRI, its always been successful for me picking anything up. Do I think of another recurrence??? NOPE...but not through ignorance but why?? and do I think about the possibility of METS??? NOPE...why??? because I will miss every single moment of my life right now worrying about something I cannot control.

Not everyone gets Mets, my Mum was 25yrs from BC and died from an unrelated cancer at 66. She didnt have mets, I have known of friends who have had after 10-15yrs. So really, every year is a blessing and I just live. I am currently 4yrs clear 2nd diagnosis and I didnt get that far last time, so I am NED all clear and I dont look at it any other way. If it ever happened again, what can I do.

So ladies dont get hung up on the maybes, because you will miss the precious moments of your life right now, and that is all that matters, the past has gone, the future isnt here....we only have NOW!

Live Live Live however that looks for you..x
Kiwi_Angel
Member
7 years ago
@primek - Im with you - I prefer to think of myself as cured and if it does rear its head again Ill deal with it at the time. I have done all I can to get rid of this cancer and will be as proactive as I can in detecting any possible recurrance in the future
Kiwi_Angel
Member
7 years ago
I have had 2 CT scans and all fully funded. The first one was after I was mistakenly told it had spread when even my lymph nodes turned out to be clear. Dont know it this made a difference or not.

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

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