I would like to make clear why I didn’t change the title of the thread. It is not that I am oblivious or don’t care about upsetting vulnerable people, on the contrary I care very much. I was hoping that by discussing the reasons why Anderson MD are doing so well, we could have a constructive debate that would provide ideas for those who might be worried about the lack of treatment options open to them (and possibly motivate people to campaign).
I’m aware that we do have to consider the feelings of others, and that is why when I realised I had lapsed into personal comments, I quickly edited my post. However, as the primary purpose of BCC is to provide information ( BCC aims are clearly stated on the Charity Commission Website). Consequently if a person subscribes to a website where the primary object is to provide information, then they have to accept they will sometimes receive information they would prefer not to know.
I hope that explains things.
Lemongrove - this is one time when it would be good if each topic came up only under it’s umbrella area - as many women first log on here when they have just found a lump, or just been told they have cancer, without knowing what grade/stage/prognosis/treatment etc etc - and it is those women who might well be terrified by a headline like that - at a point where everything is terrifying and they are already convinced they are going to die - when in fact they may still just be looking at a cyst, or early dcis, and really don’t need the added stress of statistics that they wouldn’t have had a clue about.
Once dx, yes, information is valuable, and can be life saving, you are absolutely right that we should know, and be aware that by coming onto this site we may unearth information that is not too comfortable. But at initial dx, or suspicion of bc, then that is information overload, and, in my opinion, an unnecessary burden on these frightened, bemused women.
I think that the info you are sharing is truly important, and the questions you are asking, equally, if not more so - but you cannot ignore the issue that the vast majority of us come on here for the first time knowing virtually nothing about our own position in the whole bc rollercoaster, and are all too easily convinced that we are about to die. Tomorrow.
So, thank you for changing that thread title - doesn’t mean the content has to be censored, after all.
Sophie xxx
I appreciate what you say, but the title did say stage 4 survival statistics, and so it was clear that was who it was for.
But did you know what ‘stage 4’ meant before you had cancer yourself, unless someone very close to you had had it? I certainly didn’t. I’m not criticising you, just pointing out that it can be difficult to find the balance between sharing important information, even though it’s difficult to think about, and repeating scare stories, bearing in mind that news headlines tend towards the sensational even when the content is more measured.
Cheryl
I must admit I had assumed the meaning of Stage 4 was common knowledge, but I guess not. Even so, wouldn’t staging be one of the first things you would find out about after dx?
When first diagnosed I read loads, and before I got my results I had convinced myself that I was already stage 4, even though I had no facts to base that on, just the pessimism of The Waiting Room. So a thread saying I had only an 8% chance of survival would have sent me into complete meltdown and I was already perilously close. I didn’t find out stage until several weeks after my lump was removed, so no, staging wouldn’t necessarily be even close to the first thing you find out.
I would like to join others in thanking you for the efforts you are making for the benefit of all of us, it is really appreciated.
Flinty for me no, the fact I had just been told I had cancer was it for me, I had no idea of stages, grades or anything else. Had I have come on and seen the title of that post then it would have really really worried me. My BCC explained stages and grades to me until then I had no idea just assumed I’d been handed a death sentence with the words “I’m sorry its cancer” and that was all I had in my head.
Sorry Choccie - I meant the concept of staging, not necessarily one’s own stage.
This is a very difficult, but for when I was diagnosed I didn’t know stage levels. Some things 1 highest 4 lowest, so yes that would of scared the daylights out of me. And when I saw the title I still went cold. I am one of the posts who support pink and fluffy, that’s my choice my opinion. But also it’s my choice to know what my odd are too. Me and hubby have talked about it before this post and we at the moment don’t want to know. We want to live for today and deal with tomorrow when it arrives, because if I personally look to far ahead I can not cope at all, I will lose my will to fight. It might be said that’s burying my head in the sand, but it’s my choice, my right. And when or if I’m ready then my onc and this site will help me with it, so please please can we be carefully with titles, ‘survival rate for stage 4?’ would tell me not to look, but be there for people who do want that information.
As I said earlier the BCC forum is primarily a site for information, as you can see by looking at BCC’s stated aims on the Charity Commission Website, and by looking at the Community guidelines. Therefore it is inevitable that you will see info that you may not like. But hopefully the info provided will expand your options.
Would that mean that for the sake of thinking about a title I might have to forfit the benefits I get from these thread?
The idea is that you benefit from information, by hopefully recognising that there are more options for you. The whole purpose of BCC is to provide you with information to help you deal with things.
Just wanted to clarify- Noone has requested that this information is withheld from forum members. noone says this is not interesting + potentially useful info. All we ask is that titles are worded in such a way to give us a choice about whether we wish to read that info or not. dragonfly and others have the right to use these forums + to select what info + threads they read without being distressed by upsetting detail within thread titles. Simple request- but still too mch to ask it seems despite yesterdays upset + intervention by the mods 
With respect, there are titles that stage 4 peeps might find very upsetting, but if we constantly censor titles, nothing will ever get posted. Sometimes I get upset when a stage 1 peep announces the all clear, because that will never happen for me, but I would never dream of censoring the title.
As we all know - as we ‘google’ and research after our initial dx we do stumble across info that we either don’t want to hear, didn’t realise or didn’t set out to find. We also find info that is biased and even untrue. We find this whether we want our options expanded or not. However, in this case it’s because we have actively searched for info. The difference here is that the title gave you no other option but to take in the snippet of info - in a very emotive way.
The title didn’t bother me in as much as i chose not to read the thread based on the title as i didn’t feel in the mood to take in bad news but i can understand how it may have upset others.
I come on the forum for and to offer support, reassurance and even have (dare i say it) a laugh. I’m very aware that hot topics and issues need to be discussed and highlighted but care and thought need to be taken about the feelings of others, particularly those just dx. It may seem to some over the top to complain (I didn’t) but the fact that people did means that they were upset, albieit unintentionally and so we should respect their views.
I agree with Trip in that I having the title changed was a good thing without having to dilute the info.
Unfortunately reading something I do not want to deal with is not benefiting me just making bc harder to deal with. I’m not saying don’t discuss these issues, just please be careful with your titles. Every one has the freedom to express themselves, but surely you can do so while using a little thought on title wording.
Very well said gingerbud. By and large we are perfectly capable of seeking information for ourselves, as and when we want it. We do not need to wait until someone decides that she has found some information which she feels needs to be dissmeinated and acted upon by the forum at large. If some members want to hide their heads in the sand-so be it.
Perhaps we all need to think of how others will react, and not work to our own specific agendas and interests-not rocket science, just common courtesy.
Trouble is we can all get upset about something in a title, and if we go along the censorship route, nothing will ever get written.
I had come across that research myself before Lemongrove posted on it.I cannot say that,despite being dx stage 4, it particually upset me because I am sceptical about statistics.You can make statistics show whatever you want them to to try to prove a case.
I am more concerned that every cancer suffer gets at least a basic standard of treatment wherever they receive it.It is the least we can expect that the proffessionals we put our trust in are giving us the best possible treatment, particularly aimed at exstending our survival rate.We should not need to do our own research and push to get the treatment we deserve.It should be there available as our right.Ok maybe that is in la la land but I agree we should be working together to aim for it.
I have just moved house mid treatment so am now trying to establish if my new treatment centre is as good as my previous.I was dx and treated at Leicester and could not fault the treatment and my onc was brilliant,a very understabnding woman who allowed me to be proactive in my treatment choices.So far it would seem my new onc likes to do the planning of ongoing treatment without much discussion.I have only really had one appointment with him but he seemed more concerned about a trial he was running,as were the nurses,than any concerns i may have and I returned home a bit bemused without asking the questions i intended.I will go back next time prepared with all my questions and concerns written down and have no intentions of leaving without having my input.
I think the most important thing is that we must feel we are being listened to and our concerns and needs taken seriously.I know money is always the thing that will govern levels of treatment, and this is something we do need to campaign against with the aim of a basic gold standard treatment for every stage 4 person.
Lucinda x
Elaine, I have never claimed to be cured, so please don’t misquote me, or accuse me of burying my head in the sand, and please try to remember community rules about criticising the post and not the person who writes the post. By the way, I would also prefer it if you referred to me as Lemongrove, rather than she (I’m not the cats mother as they say).