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Video re Mets BC .... EVERYONE needs to watch it
Comments
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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.2
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@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.
xoxoxo1 -
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.4
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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.2
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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.1
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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 too4 -
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?1 -
@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.2 -
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 hope6 -
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.0
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@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 future5
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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..x15
