Also Fran,
I am in agreement with you. If I do not like something I will not open it.
However this is the thread title so cannot be avoided. That is the whole point.
Julie
Juliett I wasn’t referring to you in particular, and I’m sorry if you think that. I was just pointing out there appears to be an inconsistency, in that the same people who say they don’t like the pink campaign because it trivialises BC, then say they don’t like the facts being made explicit.
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.
Let’s hope that 7 years down the line, the survival rate is a lot better than 8%. Good luck to all at Stage 4.
Nottsgal, I’ll drink to that - and I think it will be. There are so many treatments coming on-line now that can knock back secondaries, and delay progression, but at the moment PCT’s are balking about funding them. That’s why it’s so important to keep reminding people, so that we can keep up the pressure.
Lemongrove, as your thread has caused some distress would it not be possible for you to keep, the thread, the link but moderate the title…eg. Stage 4, 10 year survival rate in the UK?? Then those who wish to avoid reading further would at least be able to choose.
Hi Lemongrove and all,
Firstly, I’d like to say that I do admire your articulate, challenging posts and campaigns, Lemongrove and feel that they have certainly helped raise awareness of important issues regarding BC and its treatment. However, I also agree with most of the posters here and find the thread in qustion’s title rather too “in your face” and maybe could be modified to something like " Why do we in the UK lag so far behind the US in Stage 4 with 10 year survival stats?" OK, that’s a bit wordy and not the snappiest of titles, but you get my drift! I also see what you are getting at with the thread, Lemongrove; if they can achieve almost 1/4 survival, why can’t we? Something is amiss in a supposed well-developed nation.
I had a similar “fright” a month or so ago when a ( Brit.) poster who lives in the US started a thread on this site asking various qs etc. She presented with a very similiar dx to myself - ie. supraclavacular mets and in one of her posts mentioned that her onc., unprompted, told her that she should be here in 5 years, but 10 was pushing it. And this is Stage 3 (C)! I was haunted by these words for days and feel that this thread may cause others to go down the same path.
All the best, Sarahx
Lemongrove I’m glad u quickly edited your earlier post as the tone was very aggressive and unecessary. I really don’t think you have the right to decide what information members of this forum shuld be aware of. If people prefer to not know then that is their choice and NOT yours. I feel strongly about this- not for my benefit but for others. I am saddened by your reluctance to edit the title of this thread.
Moderators I am disappointed that you have not intervened thus far…
Tina
It would be nice to have a response BCC.
I’ve had many years to get used to my diagnosis but if I was newly diagnosed, struggling with treatment or having to deal with all this disease brings whilst bringing up a young family I would most very probably prefer a choice of whether or not I click on to read a thread. I admire your passion Lemongrove but in this case I think the sledgehammer/nut title is not helpful to others. I agree with Julie, Elaine and others here it’s not a question of being in denial and I wholeheartedly agree with Elaine in that most of us here accept there is no cure for stage 4 breast cancer.
This does not make us victims or passive patients but perhaps, like myself, the majority aim to make the most of however long they have left, making each moment count whilst still researching various treatments and seeking information. I’ve always found this paragraph from Musa Mayer’s book on living with Secondaries helpful,
Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, preferring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.
Hi all
As you can see (hopefully) we have edited the title of this thread, following feedback from forum members who found the original title distressing. As well as the posts on this thread, a number of people also reported it to the moderators. Although not all the posts here felt the same way, overall it was clear that lots of people did feel strongly about it, and that the issue of the title was dominating the thread, rather than a discussion of the issue raised in the original post.
Best wishes to you all
Leah
Thank you Leah.
Thank you for keeping it on as long as you did Leah - hopefully it will have given some food for thought.
I was following this thread rather late last night and was puzzled by something. I resisted posting cos late at night isn’t the best of times to do some straight thinking!!
I was never any good at debating issues and hoped someone else would have picked up on this, they didn’t so now I just have to ask the question.
I am not very good at looking at a lot of statistics and drawing correct conclusions from them - in fact I get very confused! But surely we are not comparing like with like here. What I am seeing is that the English figures are taken from a group of women in the W.Midlands in the early 90s and the word ‘deprivation’ comes into the article. Would it not be fair to assume that the comparison with Anderson MD (Texas)would involve a much more affluent sector of society? And wouldn’t those facts affect the outcome if they were to be set side by side?
I didn’t feel too comfortable with the heading when it was referring to statistics so out of date. It came across as undisputed fact to me and it is so easy to take 2 separate sets of facts to support a theory that may not be correct. JaneRA was sometimes guilty of doing that and on a couple of occasions I questioned her reasoning - and to be fair to her she always had the grace to apologise :).
dawn
xx
Dawn the stats I have referred to were by stage, not deprivation. On the same page there are other charts that give stats by age, and deprivation etc (and that is what you are have seen). The stats by stage were based on a sample, but cancer research suggest that these are likely to reflect what is happening across the UK. Although they started in 1990, they were updated in 2004 (the year when Anderson reported a 23% 10 year survival rate).
You may also be interested to read and article on today’s NHS Choices website (see link below), which gives even worse stats. The NHS say that only 10% of stage 4 BC patients survive for 5 years.
news.patient.co.uk/newspaper.asp?ss=15&id=14478
You do however make a good point in that those treated at the Anderson Centre in Texas would probably be affluent, because obviously their healthcare is private. But the difference is too large to be down to that. The fact is that Anderson offer a range of drugs and treatments that are not available here - and that is something we really need to address.
The Daily Mail also published an article recently, that said the 5 year survival rate for all BC’s is 93% in the US and only 73% in the UK. Will find the link for you later.
Hi Lemongrove,
Ive only just caught up with this thread, so i hope noone minds if i put in my two pennies worth if thats ok?, i am glad that the title of the thread has been changed because i did find it a bit depressing too to be honest even though im still a primary patient at the moment, seeing statistics figures as soon as i log on just puts me on a downer. so i can imagine how distressing it must be for some of the other secondry ladies , I remember when i first came to the forums how i would read stuff that i wasnt ready to know and it would frighten the s**t out of me and put me in a very dark place for days.
Im not an ostrich by any means,and ive been around the forums long enough to know how unpredictable this vile desease is,so i certainly have no illusions about my own DX , but i do think people should have the right to want to know this stuff or not and not have it forced upon them. I know we can open threads or not but if someone has already read a title its a bit late isnt it?.
I read something simular a few weeks ago on an “Alcohol” thread where someone posted about “primary patients” greatly under estimating their chances or reocurrence or secondries and quoted the figures which seemed pretty high ,i found that quite upsetting not so much for me but i dont think it was nessessary to frighten people who were already going through a very difficult time.
I was the member who posted about “Freedom of Speech” on the Pink thread and its something that i firmly believe in because in my opinion the forums have become intolerable to different views but, and i hope in my post on that thread that i also made it clear that there is never any justification for any nastiness or personal attacks of another member,i feel strongly about this because ive been on the recieving end many times and believe me it feels pretty horrible.
I think its wonderfull that you campagin so very hard to get new treatments approved for everyone with this B***ard desease and i applaud the work you do in that so thank you for raising some of these very important issues, maybe just be more sensitive to others feelings sometimes on issues like this?Attack the post and not the Poster!
Stats can be usefull and helpfull to some people, but for me they mean Ziltch, they dont tell people what will happen to them personaly , it wasnt that long ago that it was found that the UK stats were wrong and they were much better than previously thought, this was because imput and data was incorectly recorded,Stats are only as good as the people who record them!
I think its important to remember that there are new treatments coming out all the time ,There are also about 500 new generation cancer drugs in the pipeline, yes, some of them may not be available right this minute, but people need hope lets not take that away from people.
dailyexpress.co.uk/posts/view/227397
I realy hope my post hasnt offended anyone ,
Best Wishes
Linda x
Linda thank you for pointing out that people should comment on the post and not the poster. Actually, I happen to care very deeply about my fellow cancer sufferers, and I find the suggestion that I don’t deeply offensive. It’s that I do care that I am so concerned about the availability and quality of healthcare in this country.
However, I do not agree that people have a right not to see this kind of information, because in entering a public forum they must appreciate that they will probably read things they do not like or disagree with.
This forum is not only for support, but information and campaigning, and so freedom of speech is essential.
Lemongrove, I am happy for the mods to edit my post if they wish. My comment was justified though, since you blatantly ignored the pleas of many forum members who felt your title would cause (and was causing) distress. You adamantly refused to change your post and seem to think you have the right to decide what information we are exposed to. Yes you are doing some worthwhile campaigning for bc but I do not think your campaigns should cause distress to the very people you are campaigning for!! I’m not sure exactly what you want us to do with this info other than worry about it! Sadly, many of us at stage 4 are very unwell + are unlikely to ‘get our campaigning heads on’ in the light of your info, as we are already struggling with day to day life, dealing with horrid s.e.'s, and trying our best to care for families etc.
Most of us know the odds are firmly stacked against us and don’t need it thrown in our faces every time we come on here for support. Yes, for support.
I apologise if my comment has offended you in any way- however I read your very aggressive and offensive post before you edited it and and feel there is a touch of hypocricy going on. I am one who is prepared to apologise when I cause offense and that is something you adamantly refuse to do…
Tina
This is all getting very personal again…
Gingerbud I have explained my reasons for not changing the title of the thread.
I would also point out that I had the courtesy to edit my post when I read it, and realised it was probably going to cause offence. You made a very unpleasant remark, and made no attempt to edit it, and now suggest it was justified.
I have been following this post but have not posted out of fear of reprisals. I’m staying away from this now!
Lisa, please post, it’s an important issue, and people shouldn’t be put off by others.