'too much pink awareness and not enough reality' - yes indeed.
Should this thread be re-titled SCARY LACK OF STATISTICS? How difficult is it to collate the numbers with mets for crying out loud? No wonder the answer to so many of my questions has been 'there is no evidence....'. There's plenty of evidence, it just hasnt been collected and analysed usefully enough.
And how difficult is it to inform us of mets signs and symptoms before we are cheerily discharged from primary treatment and exhorted to go and live our lives because we might fall under a bus?
I feel a conspiracy theory coming on......
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?
Thank you Anna!
Mals- I am sure the fact that I am working past retirement age has affected the perception of professionals about my treatment. Almost an argument in favour of not retiring! Almost I say. If it was up to me I'd have retired years ago!
Emma Pennery, our Clinical Director has sent me this further information which I hope may help answer some of the points you have raised.
We don’t have reliable figures about the percentage of people with secondaries at diagnosis or the percentage of people who go on to develop mets. This is because until last year, no national data was collected on the incidence of advanced breast cancer. As a result of our campaign, it’s now mandatory for data on all new diagnoses of recurrent and secondary breast to be collected in England, but it will take time for this data to be collated and analysed.
There are some estimates, but these are from incomplete regional (local) data only, and derive from people treated in the mid 1990’s, so they have to be taken as best guesses, rather than definitive figures. They indicate about 5% of women and men diagnosed with breast cancer had metastases at the time of their primary diagnosis. The data also suggest between 20 and 35% of all those with a primary diagnosis went on to develop metastases in the 10 years following diagnosis.
With the figures you cite, such as 90% of people survive 5 years, you cannot assume that the remaining 10% died of breast cancer. The figures only show the percentage of people still alive five years after they were diagnosed. They do not indicate cause of death. Some people surviving five years will be free of disease, some will already have recurrent or secondary disease, but the data doesn’t tell us how many fall in each group.
But survival and mortality figures don’t apply to individuals because they don’t take into account the type and stage of breast cancer. Each person’s risk may be much higher or lower than national figures for breast cancer outcomes.
WOW so many different figures, it would be nice if everyone would sing from the same hymn sheet!! no wonder people get confused,
I would like to know how they can predict an individuals survival rate ,when 2 exact same cancers,that look the same , as in size, stage, grade,hormone status etc, but are not the same, as they can express different gene molecules, i.e. a subtype (they have found 10 different subtypes so far) but at present all the tests ONLY use the standard, characteristics of a tumor to decide on treatments?, i.e. adjuvant online etc, the reason likely why all cancers don't respond the same is due to these different subtypes , i.e., why some recurr ,some don't ,whatever the stage , unfortunatly at present I do think it is a bit of a crap shot, at the moment it is a one size fits all in treatment decisions, but clearly it doesn't fit all !!
So personaly i am not that comforted by the present stats given, as stats cant tell us what will happen to us personaly , breast cancer is not one disease, it is many, roll on the future of personalised cancer treatments.
But that is probably another debate!!
It is, as many of you have said, really healthy to have open debates and discussions especially when the subject may be perceived as a difficult or challenging one. There are so many statistics and figures mentioned here on this thread and that has made it difficult to respond as they all appear to be coming from different sources, a bit like comparing apples and oranges!
Because this is less than straightforward our Clinical Director has written a blog http://www.breastcancercare.org.uk/news/blog/understanding-breast-cancer-statistics to try and address the questions and comments that have been raised.
It was felt that by responding to this thread via a blog we can also share this information with others who may also be having the same questions, not restricting it to forum users only,
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.
I am afraid I take a very simplistic view of statistics - you will either be lucky or not. There is no real way of telling what side of the coin you come up with. As said earlier a number of low risk people end up dying and a number people with a very poor prognosis live for years. Researchers are still working on finding out ways of predicitng how disease will progress - hence the current trend of overtreatment on initial diagnosis in some cases. I also believe that researchers are working their socks off to come up with better and more effective treatments for this disease - they can do no more.
Like the gentleman said I am enormously grateful to the NHS epsecially having an American aquaintance who had to borrow nearly $60,000 dollars to pay for treatment due to small print on their health insurance.
At the risk of causing offence I think it can be stressful and counterproductive to get bogged down in statistics which are possibly out of date or have a very definite bias or are poorly collected and analysed. Take a look out of interest if you need to but don't dwell or tie yourself up in knots is my attitude.
On wards and upwards - Jacqui (bone and lung mets)