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

brightspace
Member
7 years ago
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 best
Bright in hope
kezmusc
Member
7 years ago
@kitkatb The brain scain was an MRI. I requested that because of the severe cognitive disfunction I began experiencing. I assumed it had gone to my brain. As it turns out it was just the lovely Tamoxifen drugs fooling around with my head and turning me into a space cadet. Grrrrr.

Interesting question @Sister.
Sister
Member
7 years ago
Absolutely @arpie

One question I have for those who are more knowledgeable than I am. Every now and then (as happened yesterday on a fb group) I read that someone's treatment has gotten rid of mets tumours (eg lungs). Is it that they're really gone or just hiding and managed?
Kattykit
Member
7 years ago
Too true @arpie life is for getting out there and living not sitting around being scared.
kitkatb
Member
7 years ago
Well said @arpie Here's to more fishing. :)
arpie
Member
7 years ago
We have so many courageous ladies in our midst xxxx Life is a bitch sometimes.

You cannot rely on mammograms and ultrasounds, alone, to dictate your fate.

None of us asked to join this BC club. The fees are extortionate.

None of us 'want to' get BC (or Mets) .... that is a 'given'!

We all have BC of one sort or another

Some have had Recurrence

Some will have recurrence

Sadly, some will get Mets

Please - just be aware that Mets is 'on the table' - do not assume it won't happen :( This is not a threat - it is reality.

Knowledge is a weapon - and hopefully identification & medication will improve & prevent us from joining this rather exclusive club.

Personally, I tend to look at the 70% '3/4 full glass' myself .... so I just keep on doing what I love doing!

You should too
kitkatb
Member
7 years ago
So true @kezmusc and @Kattykit I'm going to follow through on an MRI when I am due for check up in June. what is the brain scan, is that just a normal cat scan. Do I ask my Onc when I talk to him in March/April, my surgeon ( who will look at the ultrasound and Mammogram in June ) or my BC nurse to arrange. Not dwelling, just want to be armed with as much knowledge as possible.
Kattykit
Member
7 years ago
Truly I think just a mammogram and ultrasound on their own are useless mine came back in my bones, right femur both hips skull and scapula, how is a mammogram gonna find that.
primek
Member
7 years ago
To be honest I'd rather believe I'm likely cured than thinking I'm one of 30%. I think in reality most people with breast cancer fear it becoming metaststic. Just focusing on that though can suck the joy out of life....however long that is.
kmakm
Member
7 years ago
@kezmusc Thanks. Will have a rethink once I've had a chat with the CHEK2 expert.

Forum Discussion

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

92 Replies

Recent Discussions

Share Your Voice: Metastatic Breast Cancer Awareness

📱 Help Shape a Support Program for People Living with Metastatic Breast Cancer

New kisqali packaging

💛 Help Shape a New Text Message Support Program for People Living with Metastatic Breast Cancer

Complete Metabolic Response De Novo TNBC