While researching funding for Faslodex, I came across these figures in an on-line NHS document:
“Approximately 20% of women initially presenting with breast cancer have advanced disease with distant metastases and around 50% of those presenting with early or localized breast cancer will eventually develop metastatic disease.”
This was marked “For NHS circulation only - Not for commercial use” (even though it is now in the public domain as it came up on a simple Google search!), and dated September 2011.
If these figures are correct and unless I’m reading this wrong, 60% of all breast cancer diagnoses will result in metastatic disease sooner or later, regardless of stage at diagnosis, treatment, etc. This is far higher than the 30% I’d previously seen quoted. And even for those much-lauded early diagnosis “success” stories that the Pink Brigade love to throw around, it seems it’s still a 50-50 crap shoot… Has anybody else ever come across similar figures?
I’ve never seen these figures before, I thought approx 45,000 women a year were diagnosed with BC not 30,000 with 5% having advanced BC at diagnosis.
I understand them to be true Angel. I have read very similar and yes they are usually hidden from the general public.
We should be concerned… of course… and so should the organization BreastCancerCare… and the general public…
… but I personally think it is important to look at how these statistics change over time. If they are not improving over the years as new treatments become available, there is something VERY wrong.
Yes that’s very true, I’m a survivor of ten years but I’m stage 4. So although I’m a survivor at the moment I’m young enough to die from breast cancer not old age. I have only just become eligible for the national screening programme.
Angel falls I will send you a PM.
Hi,I’m no expert but the NHS information may be on the internet as it’s out of date as it’s that freedom of information stuff? And old date becomes public,not sure of time scale. My onc told me 20% of patients will have BC & secondaries at time of diagnosis ,myself being one of the 20% . I’m still in my 40s too. I’d had a mammogram 6 months before diagnosis that was clear too! (Family history) Helen xx
Survival rates in primary breast cancer are a bit varied from source to source. I’m in the FAST forward radiotherapy clinical trials which is supposed to raise your risk 2% if you are in the test group (I’m not as it happens) I spoke to my CS who told me normally primary BC is 2-3% local recurrence, but in my case (Grade 2 cancer,NAD in sentinel nodes,) he would have said a lot less.
Before I get too complacent, and remembering friends who were also in low risk groups for cancer,now no longer with us, there are lies, damned lies, and statistics. It is the unknowns both known and unknown that are frustrating, often torturing, us cancer survivors!
Oh how i miss the debates on BCC , even if scarey at times i agree that cans of worms sometimes still need to be opened, i think we need to be able to talk openly about all these isues ,and not brush them under the carpet for fear of upsetting anyone, the only way to fully learn about this disease is by education, and i think the forums in my expierence thankfully have always played a part in that , all to often breast cancer is talked about way too lightly , I get astounded for instance at the nunber of new ladies i come across thinking of refusing treatments on the forums , the general publics view of breast cancer is that BC is completely cureable and nobody dies of this disease these days, this is perpetualted by the media and also sometimes charitys who only want to put across the good news stories and leave out some of the harsh realities of the disease, because well quite frankly it is all to frightening , The fact is lving with cancer is frightening , i dont think it helps anyone to not be able to talk openly about all the issues that surround their disease, because these are the issues that matter , there was a time that noone talked about cancer, it was hushed up ,people were isolated and left to get on with it, im so glad that we have come a long way from that now, because if we dont talk about the uncomfortable issues nothing will ever change , people need to get angry sometimes to bring about change and also to bring about change of attitudes,
Forums are hard, in my expierence they have always been a double edged sword , and im sure all of us at some point have read stuff that maybe we wish we hadnt , that doesnt mean that the serious issues should ever be avioded , we all are responsible at the end of the day for what we choose to read ,even if sometimes scarey.
Thats my view anyway , but at the moment im still a primary lady ,and maybe i shouldnt even be commenting on this thread.
Thanks for your sensible, realistic and well-informed post, CornishGirl. Please don’t ever think you’re not welcome to post on secondary threads! It’s really not a case of “us and them”, rather the distinction between those who want the facts and those who are happy to believe the fiction and that has nothing to do with the stage you may currently be… I hope you will always be a primary lady, but if not, you will certainly be well-prepared for whatever may lie ahead. xx
That’s ok I just wasn’t sure if you knew Kevin.
Ah L everything Angelfalls said, it’s just feeling this is the one place out of all the other forums where we should be able to discuss the darker stuff, more than it being exclusive to only stage 4, it’s not. X
I’m relieved you are still confused Angelfalls, hee I thought it was my chemo brain. X
I’m more confused than ever.
Just wanted to say thanks to Belinda for reading my post and to angel falls for her lovely reply. You will have to excuse me if I don’t agree with comments on this thread which state that people over 70 get equal treatment. Age discrimination is rife within the Nhs and I’ve seen it with my own eyes with my own mother. She wasn’t too weak to fight it but was by the time anyone listened to her. I’m pleased if others have had a good experience but please don’t assume that this means the NHS operates like that for everyone.
Thinking of my group all stage 4 with many like me stage 4 from diagnosis the 1 in 10 is way off. And not in a good way either. I think that mirrors those using the forum too?
I read this quote which I wanted to share with you all.
If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
It’s totally understandable to look to statistics for answers and although I’m not in your situation I’ve done the same. When my sister was diagnosed I went online to check the survival rates and then again when my mum was diagnosed. We first discovered mum had BC when they discovered secondaries on her colon. Apparently the statistical chance if that happening is about 1 in 1700 and when I called BCC the very kind and compassionate nurse told me she had never heard of another person with secondaries on the colon. How did that make me feel? Like my mum had been singled out. I then thrashed about trying to work out statistically how long I had left with her and a friend sent me that quote which grounded me. When alls said and done a statistic is just that and frustratingly doesn’t give us the answers we so desperately want. Oh and yes I also know statistically how likely I am to get BC with a mum, sister, maternal aunt and two second cousins. I’m sure I would be studying all statistics going if I’m diagnosed but I hope the quote has given you some hope. Take care
I am only a primary lady, but these statistics obviously are of huge significance to anyone with a primary diagnosis. To me what we are being told just doesn’t stack up. There are roughly 45,000 to 50,000 new cases of breast cancer each year, depending on where you look, and 11,000 to 12,000 deaths. So roughly a quarter compared with new cases. If half of us go on to get a secondary diagnosis, but only a quarter of us die, the number living with mets must be going up hugely year on year. I know treatments are getting better, but somewhere on ths thread I have seen a statistic that says the stage 4 five year survival rate is 13%, which doesn’t tie in with the above.
Also, just anecdotally, I know loads who have had breast cancer, but not many who have gone on to have mets.
Am I missing something here?
I do still believe the 50% stat and if it’s not 50% (I think) it’s very close. But I think some of the reasons you (may) not know many mets women RoadRunner could be because many of them hide away so as not to frighten those who have been diagnosed but are not stage 4. The stats Angelfalls found even gave the game away themselves, Not for the general public. These were not from some obscure site either. As Mema says we tend to stay here on the Secondary forums so as not to frighten others. When others (not all) post here without realising they have strayed into the secondary forums we have, sometimes, been told ( told off ) not to scare others, stop talking depressing statistics etc.
I know some friends just stopped going to get togethers when they were diagnosed stage 4. A friend who died a few years ago now raised thousands of £s for a Maggie centre by swimming round various isles in Scotland. When the press were ready for the presentation of the cheque a well meaning? Nurse quickly wheeled my friend, Alison, the swimmer who by this time was in a wheelchair, into another room as she would have depressed the other bc patients. Just yesterday there was an article in the online edition of the Daily Mail about a lady who had seen her GP many times troubled by a cough. Even though she had been a bc patient a few years before this the GP took none of this into account. By the time it was investigated the lady was found to have bc elsewhere and she died soon after. All the Pink awareness counts for very little knowledge. A comment left by a reader said something along the lines of …it’s very sad, she might have lived longer but once it had spread the outcome would have been the same…This comment got many thumbs down, red ticks. Her parents and the DM said she had lung cancer and her parents, obviously very upset, thought she could have been saved if the spread had been discovered sooner. Why do even BCC talk of cancer coming back? Unless it’s a new primary it was always there. Sorry I have strayed from stats but I was interested by your post and it’s one of those things I want to get to the bottom of but don’t believe I ever will.
Back to stats. There are a significant number of us diagnosed stage 4 from the beginning and I do think, from being here a while now, recently there have seemed to be more of us reaching year 5 of living with secondaries. Though very sadly there are still many that don’t. X
Hi Belinda. Do you have a link to that online daily mail article about the woman with a cough? . I’d like to read it but can’t find it despite googling.