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

arpie
Member
7 years ago
Thanks @iserbrown ... I guess we can’t get on with everyone in this world .... and he is one of the few!! He is part of the Taree public system. Very disappointing. I don’t think there are private ones up here. Funny thing .... Keith’s Port Macquarie Onc back in 2010 was a cold fish as well.

I saw him initially after rads, then I saw a lovely compassionate Sth American lady (who was still being accredited) who was ‘under him’ ... she was the one who swapped me from Letrozole to Exemestane after listening to my problems. So I was expecting to see her from then on, but was swapped back to him. I saw him the next 2 times and he hadn’t even read my notes or knew my history. In and out in 5 mins last Nov, Pooh poohing my pain and problems ... ie put up with it.... I felt I was wasting his time.

So my latest referral is with the lovely one!! She will be opening a local office too aparrently!

Mt Rad Onc had high praise for her and I have to agree.
iserbrown
Member
7 years ago
@arpie
That's no good having an Onc that didn't give a stuff!
Was the Onc part of the team?
I am a private patient and everything has been very good. My first Onc appointment was within quarter hour of seeing breast surgeon and we didn't have an appointment prior. As time has gone on I can see they accommodate accordingly, especially if like me you are not in suburbia
Best wishes for your review and your 'new' Oncologist
arpie
Member
7 years ago
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:
https://www.bcna.org.au/metastatic-breast-cancer/what-is-metastatic-breast-cancer/
and
https://www.bcna.org.au/metastatic-breast-cancer/living-well/  ;

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.
iserbrown
Member
7 years ago
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
Afraser
Member
7 years ago
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.
melclarity
Member
7 years ago
@Romla my Oncologist has always been up front for 4yrs about Mets and why Ive been seen every 6 months, only now have I gone to yearly visits with him. I've done alot of research and had a friend pass away last year from mets that she got 10yrs post diagnosis. There is alot of information out there absolutely, and so many great ladies like @"Patti J" sharing their story to help others. I think for me I live life to the fullest because I'm informed and aware of what may be in my future, it doesnt mean it will be, only possible. So I think knowledge is power, the more you understand the better, it has enabled me to let go...because it doesnt matter what you do, you cannot control it, regardless of what they all say.

He said I didnt get BC twice because I had a drink now and then or I enjoyed chocolate. I was exercising before and after. He said thats not the reason at all and to only ever do what you feel helps you feel good in yourself. :)

x
M
Mira
Member
7 years ago
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:
Romla
Member
7 years ago
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.
Sister
Member
7 years ago
As far as I know, there is a "Cancer Bank" - I'm not sure if it's in every state.
arpie
Member
7 years ago
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!!

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

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