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Video re Mets BC .... EVERYONE needs to watch it
Comments
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Double bugger, @Kattykit ... I think we all hear the 'recurrence' word often enough even from our very first appointment with the surgeon once diagnosed - but to be honest, I just thought it related to 'regular BC' not Mets.
I don't recall actually hearing the Mets word (or even being aware of it as an advanced cancer condition) until many months later ... and it was driven home to me when one of my Uke ladies was diagnosed with it mid last year (after months of a niggling rib pain and 15 years after her surgery & treatment.) Then a wonderfully fit offshore kayak fishing buddy who's had back pain for years was diagnosed straight up with it (his was from undiagnosed prostate) - and he had all the checks regularly - both bloods and 'finger'! His prostate never enlarged until his PSA went off the scale this time last year. Sadly, he is too far along for any treatment other than pain control.
But he is still getting out there on the water, chasing those big fish. I will be joining him in Feb at South West Rocks!
oh dear, that's a wake up call, @Aggie
Absolutely, @Sister - as do we all! It is best just to get on with your life - but also the need be aware of following up on any changes to your body, unspecified pain, in particular.
2 sisters in law's mums are in their 90s and had their BC surgery/treatment 30 years ago. I also have several friends who are 15 years on without recurrence of BC (tho have had brushes with other Cancers with good results.) And of course, my husband, Keith with his stomach cancer - 5% are lucky to get past the 5 year clear mark with the one he had - and he is now nearly 9 years ..... Bryce Courtenay (the writer) being one who didn't make it.
The real bugger is that our bodies are currently getting 'conditioned to continuous pain' as the medication we are on GIVES it to us in big doses - so it could already be masking pain from possible Mets. We just need to be very aware - and act on any suspicion of unusual symptoms, quickly.
Take care, be aware xx
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I think as I finished treatment nearly 2 years ago ,I’ve been very naive,I really struggled at start being positive but because time has passed I thinking I’m done with cancer,I didn’t know 30 percent becomes Mets,I thought there was much less chance than that, that’s very depressing indeed and terrifying.0
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Doctors never said that,they always act like it’s finished with0
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I have a bit of sympathy for doctors - heads they're wrong, tails they are wrong too. Making people depressed rarely helps recovery. Giving false hope makes people disillusioned and angry. I don't know how old those stats are, and as @kmakm says, a breakdown would be interesting, but I focus on the facts that a) cancer is no longer seen as automatically a death sentence; b) treatment is getting better - not always great, but better; and c) developments in treatment of many cancers (again not all) are getting exponentially faster. Many of us live in a relatively safe environment where we don't expect to be starving, homeless, or die younger than we imagine we should. But older women particularly can face the 2nd gloomy prospect, and car accidents, heart disease, and other joys are pretty effective at achieving the third. When I got a very nasty infection some time ago (thanks seroma!) I realised that 100 years ago I would have simply been filed under "death by sepsis". Cancer was a distant second as a threat to plain old bacteria. Something I think about with superbugs and overuse of antibiotics for ailments that may not really need them. I have kept a quote from Jane Caro since the time I was having treatment - I found then it helped my perspective. Her child was extremely ill, and she was talking to a neonatologist about how to cope.
" He just said the following, words I've never forgotten and that have
formed my approach to parenting and to life (and, it seems, the universe) ever
since. "Terrible things can happen," he said. "They can happen
to anyone. There's nothing special about you and nothing special about Polly.
Danger is reality, safety is an illusion."
Her child survived. Many of us do. And if you can manage it, living without that illusionary safety net can be a wonderful thing. It just takes an awful lot of practice.
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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.5
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@Milly21Milly21 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.
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 care3 -
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.
xoxoxoxo17 -
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 day5 -
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.3 -
@kezmusc - well said xo1
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This just brought a tear to my eye when I was watching it at work
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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.3
