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

Dory65
Member
6 years ago
Breast Cancer Recurrence Risk Lingers Years After Treatment Ends
https://labblog.uofmhealth.org/body-work/breast-cancer-recurrence-risk-lingers-years-after-treatment-ends
arpie
Member
6 years ago
Let's hope that continued research is going on re identifying who will get it - and 'catch it' earlier .....

Here is an interesting 'look' at Mets that I received today by email - where it can occur & what signals to look for.

(Keeping in mind that Mets in older women can be slow growing & in some cases, almost considered as a 'chronic condition' rather than a terminal one.)

https://www.webmd.com/breast-cancer/metastatic-bc-forward-18/slideshow-breast-cancer-metastasis?ecd=wnl_brc_042820&ctr=wnl-brc-042820_nsl-LeadModule_cta&mb=AW2iavDYFI4y%2fvyWhTDt8RJZpsk9%40mj5fQDpgpP8ifE%3d
melclarity
Member
7 years ago
@Anne94 I totally agree with you, in that there is so much time and money put into early BC, but you would think there would be a priority also in Metastatic BC. I lost somebody dear last year to Mets, hers came back after 15yrs. I agree also that a recurrence is and would be hard, and Ive lived through 1 already, so in total Ive been going 8 yrs with 2 diagnosis. BUT...honestly?? it is NOTHING in comparison the fear of a recurrence compared to Mets.

My Oncologist is not watching for Breast Cancer after each checkup I have with my Surgeon, (makes me wonder why they bother doing a mammo on my right then) he is watching for a secondary. 3yrs ago I thought he was pessimistic and I was so angry as Ive been great ever since well relatively lol. Thing is thats his reality and his job and nobody knows. As you say how it travels around our bodies without ever knowing. To have been through it twice I am still baffled how I never felt a thing nor felt sick absolutely nothing...only treatment ever compromised my living...so odd to me.

You sound like you are doing well and I so believe regardless we just live to the fullest, I dont think beyond that anymore because I dont want to miss a single moment of right now :)

Here's to a complete cure!! because really, you would think by now we would be far more advanced especially at picking it up before it actually has hit but my Oncologist said we just aren't there and there are no tests that are in front of it. :/

Big hugs!!! hope youve had a great weekend!! xx M
Anne94
Member
7 years ago
Hi @Sister,
I believe that we must be our advocates, and its important to do follow-up appointments, being vigilant with our health regardless of early stages or metastatic. Your life is never a waste of time, but fear can be and it can cripple you and lock you into places with no escape. It is important to put fear in its place by being purposeful and living life to the fullest.
I'm truly sorry to hear that your sister passed away from this dastardly disease. I have 3 sisters and a brother and 2 teenage children and I see the worry and fear in their faces, all the time. And I'm relatively stable with this.
All I hope is that the money that goes to research fundraised by a number of charity organisations will one day soon, have a cure or at least the knowledge of how to treat breast cancer without having a reoccurrence and have the knowledge of why BC likes to travel around the body like mine did without me knowing about it.
xo
Sister
Member
7 years ago
Hope all goes well with the future treatment @Anne94. I do think you're right. The pink theme has brought in awareness and money but it is soft and fluffy and there seems to be little place in the spotlight for Stage 4, regardless of how you get there. That is your reality and for those of us treated at earlier stages, our fear. I don't feel that my visits are a waste of time as I am examined carefully and my concerns and questions are listened to however I do wonder how it is really going to change things. My sister was treated for very early breast cancer at 32 and died from it at 46 - once it recurred it, it moved fast. I take comfort that much has changed since her recurrence in the 90s but whether it has changed enough - who knows? My medicos have told me that at this stage the cancer is gone and quite possibly they are right but they know that I don't really believe it as I have seen it disproven before. In the end, we do what we can do and live the best we can with what we know.
iserbrown
Member
7 years ago
Anne that's fantastic that your Oncologist was able to access on your behalf on compassionate grounds.
Best wishes for the 19th and continued stability.
Take care x
Anne94
Member
7 years ago
Hi. @iserbrown,
i have currently mets to bones still. About to go and have my 3 intermedullary nail inserted on my left femur on the 19/2. These as you might be aware keep my long bones stable. I’ll also be starting Palciclib & fulvestrant in the next week & month. My oncologist was able to access the Palbociclib on compassionate grounds.
Being your own advocate and vigilant is important when dealing with your doctors, it is, what I find gets you what is required for your treatment.
Xo Anne
iserbrown
Member
7 years ago
@Anne94
Nice to hear from a perspective of a mets diagnosis. To have stage 4 from the start is certainly a so and so.
The fear of recurrence is real however I can't see the sense of worrying about something that may or may not happen. It's awareness of self and maintaining appointments that helps with vigilance. Some on the forum recently have commented about in and out appointments with registrar or oncologist with no physical examination. Thank goodness mine is diligent as I work my way through treatment and time passes.
Anne where are you at with treatment? Do you have stability?

Best wishes
Take care
Anne94
Member
7 years ago
Recurrence would and definitely be a scary thing for women to go through. But here in Australia and worldwide, there are a large bunch of us that have been diagnosed with Metastatic Breast Cancer from the beginning or de novo. There is a lot of noise and publicity for early breast cancer cures and treatment which is great and important.
But nobody wants to talk about us, the media shies away from the word Metastatic or Stage 4, they use softer words like secondary or advanced. Trials are hard to find, or even access, not to mention medications as well.

Don't get me wrong, recurrence would be awful, scary and a horrid thing for women and their families to go through. I certainly would wish stage 4 cancer on anybody.

xo Anne
Annski
Member
7 years ago
Good point, @sister, and heartening to hear that this changing view is coming into focus, at least among some oncologists. A major issue though is that the research and laboratory-based work is proceeding apace but it takes so long for clinical trials and then for public health bodies to authorise the use of the new methods and techniques. People who could benefit immediately aren't able to access new treatments fast enough. Hopefully this too can change.