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

@Kmakm,   I just jump up and down until they give it to me to shut me up I think LOL. 

I've never paid for a CT especially the initial staging one. Maybe they only do it if your node positive upfront,  I don't know.
I do not trust under any circumstances the U/S and mammo on its own. With my  latest referral, to check up on the mystery MRI find, I've made them include a rescan of where the lymph nodes were and chest nodes.  I realised that in all my follow up it had only been the breasts they'd been scanning and not where most of it was......bit slow on the uptake huh? 

The registrar  (I think she is scared off me, she kind of avoids me at work now) said "well, that part shouldn't be a problem because we took a lot out"  Sure....nope that won't cut it, so she added it on the paper work.

If you are keen on it for peace of mind and can get yourself referred by a consultant you shouldn't have to pay.  GP referral you might.  MRI's are trickier with getting it paid for and they can pick up a lot of we don't knows but I've paid for one because I wouldn't have stopped worrying without it.
Our  hospital has recently changed their policy  and if you are referred from outpatients clinic for follow up the hospital will pay.  So that's a big relief.  
I got my brain ones bulk billed because my GP knew to put that I was suffering headaches on the referral.  Just have to have the right words on it.  Ridiculous...yes.

xoxoxo

Yes doctors can’t predict the future I suppose and if unknown it’s better to encourage patients to have a positive outlook. I found them being positive helpful,it helped me to move on, I try not to think about it coming back as these are the moments I feel panicked and that won’t change what will happen anyway. 

I found out about the 30% stat on this forum several months ago. I'm glad I wasn't told it at the start. My breast surgeon has never said cured. At our first meeting, the diagnosis, I said I needed 10 years to get the kids raised. He said he'd get me that.

No CT or MRI for me. I didn't qualify for the subsidised one, and neither my BS or Oncologist were keen. I'm still in two minds about these scans.

Like everyone, I've done/am doing what I can, crossing my fingers and hoping for the best. And if along the way I can use my experience to help, to raise awareness and raise money for a cure, I'd like to.

This just brought a tear to my eye when I was watching it at work  :'(

@kezmusc - well said xo

So sorry to hear that @maggie14   we so have to be our own advocate in this shit fest of a disease.   So often we are questioned or advised by the powers that be of what might be in our best interest.  I have total faith in my oncologist but for someone whose mother picked up mets in the brain and lung from BC i have very definite concerns about future checkups.  I just don't feel that an ultrasound and mammogram for my one boob is going to cut the mustard.  Will have to have that discussion with Onc and GP I guess.
I was like you @kezmusc  I was advised that treatment would lessen the chance of recurrence.  Sometimes the Doctors are put between a rock and a hard place.   My sister when she was advised she had stage 4 inoperable double hit non hodgkins  got advised,  "  I'm thinking that possibly your cancer is not conducive to living "  Took her a while for that to sink in and then WTF !!  ( luckily she's still out there walking 5 km a day and enjoying life and working )  albeit been to hell and back. 

Yes I'm  one of the 30% ,standard  treatment  for early bc, told that i didn't  need hormone therapy  and probably never have anymore problem  with bc .
Yes I wished  that I had seen  something like this  video it would of helped,  my instincts were telling me things weren't  right, my gp wouldn't  listen,  this video would have  made me push harder, but we all would  have ,should  have,  just need to make the best of each day

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

Milly21 said:

I think as I finished treatment nearly 2 years ago.......
I didn’t know 30 percent becomes Mets,I thought there was much less chance than that, that’s very depressing indeed and terrifying.

@Milly21
I'm sure this post was not meant to  put you in a tailspin. I get it!  I do understand your concern as I was less than happy when I read this post.
Not everyone equates to whatever % and some are fortunate enough to sail through. Others have family history and as my GP reminded me recently you can't run away from your genes (not BC related comment for me).

For me, I met my breast surgeon at Breastscreen. He delivered the diagnosis and I had quite an audience,  husband, counsellor, nurse and others. Amongst his comments were you will be my patient for the next 10 years. I was astounded by that comment but needed to keep up with the diagnosis. 
Upon reflection I understand the 10 years as I'm in it and collected both a medical and gynaecology oncologist along the way as well as now on my third set of aromatose inhibitors. 
I haven't been given a % nor  NED.
I'm in the middle of it and following instruction to hope that METs doesn't turn ip. My Mum had METs. Is it in the genes or is it just how it will unfold. Who knows!  At present I'm in a world of pain but that's outside of BC.
Be confident that you've given it your best shot.  Look after yourself 

Take care 

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.