This is a link to Cancer Research survival rates by stage in 2004. How comes Anderson MD in Texas were achieving a 23% survival rate for stage 4 ? Could it be our treatment of stage 4 BC in this country is flawed?
info.cancerresearchuk.org/cancerstats/types/breast/survival/#stage
Worrying (but presumably MDAnderson stats were not so good in 2004 either) - so why/how can we go onto raise the profile of the issue - ref your other posting. I feel a campaign coming on - how can we all really strongly raise the profile of these stats etc - BCC any thoughts since you’ll be aware of the challenges in doing this?
Fran
At the very least we should all be making our oncs aware of the difference in outcomes and pushing for the same treatment protocols.
I’d have thought “our oncs” were only too aware that survival rates in the UK are less good than in many other countries.
I listened to an interesting Lancet podcast recently where a lot of back patting took place but also reminders that e.g. Scandinavian countries have better survival rates.
I don’t think we should be too surprised but yes aspire to influence improvements, somehow.
I don’t wish to sound rude and indeed I’m only primary so maybe you won’t think it’s appropriate to comment on this thread. I understand what you are discussing and why but I think if I were. Stage 4 person who had deliberately avoided wanting to know statistics (and some do) I would find the title of his thread scary and in my face. Is there any way the title could perhaps be toned down a little just in case 
Mary grace, I know your comments are well intended, but survival rates are a very important issue. If we pretend everything is OK, because some would like to bury their head in the sand, nothing will ever change. In any case, just because someone is stage 4 does not mean they want to be wrapped up in cotton wool, and protected from the realities of life. We’re still us, and we’re not victims.
Hi, I am not trying to detract from the importance of the issue at all. Just reflecting how scared I was at dx and wondering if the same discussion could take place without having quite such an explicit title in case it is causing problems for other bc ladies, particularly I would imagine newly dx stage 4 ladies?
I’d hope the title did not upset anyone - I’ve known that’s the basic reality since my diagnosis when my Onc wisely said survival was anything from 6 months to 10 years. The rates in UK do need attention - I know we don’t all have the energy to actively respond when dealing with our treatments etc but I’m glad those who can are actively working to improve the success of treatments for all of us. I’ve had phases when I’m just been coping with my own needs but get as sense of purpose from being part of the bigger picture when I’ve the energy and appreciate having important info shared with me to reflect on if I want to.
I have to agree with Mary grace. I’m stage 4 triple neg + am under no illusions. I’ve chose to do lots of research + know my prognosis is grim. But it is a matter of personal choice- some people don’t want to know the exact figures etc + the title of this thread denies such individuals the option of choosing not to know. I agree that some newly diagnosed especially those at stage 4 at dx could be scared witless.
However I agree that it is an absolute disgrace that the survival rates are so poor + hate the palliative care approach that our oncs take as soon as a stage 4 dx is made.
I think it’s right to raise awareness on this and thanks for doing so but maybe amend the title so the % is only seen if members choose to open +read the thread?
I’d be interested to know if survival rates have improved much in more recent stats?
Thanks 
tina x
Yes i agree, pls rethink the title of this thread. I am stage 4, did not really want to know the % as i am 100% ME!
Thank you
Sadie Xx
Yes, I agree with the other comments that the title should be changed, especially as everytime someone (like me) adds another post it goes straight to the top of the Latest Posts list and everyone can then see it - whether they want to or not - and I guess they would NOT. None of us mets ladies are in denial but I sure don’t want it shouting out at me everytime I look at the Latest Posts.
Nicky
Yes I agree too! I went to bed thinking about this thread and woke this morning doing the same! I’m one of those strange people that consultants are still not sure whether I’m stage 4 or not at dx. spot on liver they couldn’t identify on 1st CT scan, after chemo and ever since (July 2009) no sign, although cysts have been indentified since. So possibly so and am on herceptin past the usual 12months for forseeable future. Have had mastectomy, recon and having further lipo fil next month so I’m expected to be here for awhile!!! I’ve had a look at the info. good that its there but I’m under the impression that it is up to 2008/2009, so 10yr survival is from people dx in 1998? as in my case herceptin has arrived on the scene since then plus other advances, progress is being made all the time we are already almost half-way thro 2011. Who knows what is round the corner eg. there has been vaccine trials (I think in USA) for herceptin and results are good.
Please remember we are all different and not just numbers on statistics!
Best wishes to all xxxx
I agree with nicky. Am not in denial and I also know we are all different.
However, i also just drop into the latest posts about 10 times a day.
It is not great to be presented with that, even if fleetingly so many times.
Psychologically it is not great… but there is all that research about imprinting things into your brain at a subconscious level.
I do not know if i believe that or not. It is just not what I wish to see.
Yep, another one in agreement. It’s our right NOT to ask/reseach prognosis-and this is something I have studiously avoided. Only to have it emblazoned in a very irresponsible manner here-not good.At least, I, and most others with stage 1V, don’t labour under the misapprehension that we can be cured. Perhaps when this fact is more widely accepted, we may not have to be subjected to threads such as this one.
With respect to those who don’t like being told the awful facts, I would point out that burying our heads in the sand won’t get us anywhere. I also think there are a few double standards going on here, because those who have posted to say they object to being presented with the harsh realities, are the same one’s who posted on my other thread saying they they hate the pink campaign because it trivialises BC, doesn’t tell it like it is, and turns women with BC into victims.
Time for the moderators to step in now methinks…
Hi Lemongrove,Your threads are well informed and you obviously know a lot about Breast Cancer.You remind me very much of another lady who has sadly passed away.In my opinion your heading is no more controversial than anything that was written by that person and who i is well respected by many forum users.Your other thread had mention of free speech,must we now be careful in chosing a title.I think if you come on an open forum you know that you may read something that isnt palatable to yourself,this is the risk you take,however this is often balanced by other threads that are very positive with people doing very well when maybe there stats had predicted differently.The site is moderated for anything that is deemed inappropriate.
Hello Anxious, I agree, and had those who have objected to the thread read the post they would have seen the encouraging news that the Anderson Cancer Centre, they were achieving 10 year survival rates of 23% in 2004 for stage 4.
What I’m trying to get across is that there does seems to be a better way of treating metastatic cancer, and those of us with this awful disease need to work together to change this. Sniping at each other, and criticising the way campaigns are run is divisive, self destructive, and won’t change anything.
Just to add again to this discussion - I really appreciate the informative and passionate way Lemongrove has presented ideas on this thread and others. I, for instance, get very upset sometimes when I see a RIP thread but realise they need to exist and it’s my choice whether I open them or not and I put this thread’s title in the same bracket. Secondary breast cancer is not easy to cope with - some days I have to protect myself and other days I can open up more sensitive threads - I have the choice as do all other participants. The title of this thread reflects the initial content so is, in my mind, useful in helping to select what to open. Can we please move on to the content of survival rates - and if anyone does not want to participate they don’t have to… It’s important to me to have information shared and I’ve appreciated having this info shared with us by Lemongrove and, hopefully, by others. I would, for instance, like to know about survival rates in France and any alternative treatments that are emerging around the world (I trust my hospital up to a point but am realistic that there are other treatments emerging and want to be fully informed about them)
Fran
Is it me that you are attacking again Lemongrove ?
If you read my postings about pink and fluffy, that is not what I actually said. I did say that I gritted my teeth and accepted it but I actually do find pink bunny ears trivial, oh and tickled pink underwear endorsed by jordan trivial too. I find the whole notion of being 'tickled pink ’ abhorrent !!
I object to the notion that I am head in the sand. I am truly not. I am more than aware of the statistics thankyou very much. I just do not want to see them in excess of 10 times a day. Does that make me an ostrich ??
Some people seem to enjoy posting deliberately contraversial posts. Ok they do provoke discussion. But why is it that when people respond in a way that you do not like they are shot down in flames.
I wonder if I ought to start a thread…" Think you’re clear after 5 years think again " or "scared of a recurrence you should be ". Well no I just would not do it…sorry…