I’m sorry to hear of Bernie’s secondary dx and wish her the very best to get through it, as we know that many of our ladies are troupers and manage to fight secondary bc for many years.
It is a scary thought for me, as a primary BC lady times 2 (each breast at different time) so I do my best to push dark thoughts to the back of my mind and hope that I will never have to face a secondary dx.
I never consider myself cured of either primary, just that I am doing ok for now and hope it will remain that way. My Oncologists and surgeon have never told me I am cured.
I do think it is wrong of the press to use the words cured, beaten - and wish they would research their stories before announcing.
I agree Lemongrove, the problem is HOW do you change the way the media reports, journalists either want a headline grabbing sensationlist story (like the breast screening over Dx fiasco) or they sqew the facts, the general public (not their fault) are ignorant to the realities of breast cancer and only know what they read in the press, and sadly even some breast cancer patients believe all the hype too.
An example of this today for me was with another lady i met with breast cancer, in the buildng where my mother lives (she is a carer) she was telling me that when she was DX 3 yrs ago she refused point blankly to have chemotherpy or radiotherapy or Tamoxifen, not saying that wasnt her right and choice to do so ,but she said her reason was because she would rather she just had a mastectomy and got rid of the problem, she then said if it comes back in the otherside she will do the same.
I dont know what the answer is to be honest, all any of us can keep doing is shout from the rooftops, pressure cancer charitys to inform the media correctly and keep pushing them for factual reporting , jump up and down and try to make our voices heard ,but while people are apathetic ( and you cant blame them many people think they dont have any clout to make a difference) and dont create any noise i doubt very much if it will change.
People shy away from reality, perhaps they dont want to read the truth, perhaps it doesnt sell papers, they only want to read the good news stories with the happy endings ,maybe its too much for them to handle. All i know is i seem to spend half my time correcting information in comment boxes in the press online these days , and then some idiot usealy pops up telling me i obviously know nothing about cancer, How do you change attitudes?
Linda
Linda, I don’t have the answers - but my instinct is that it’s a matter of informing the opinion makers. Beyond that I think (as this thread has shown) there is a difficulty of how to present fact, while keeping hope, and optimism alive.
Would be interested to discover how others think this balance could be achieved?
How will a balanced awareness be achieved, indeed?! I live in hope that BCC, and - or with - other bc charities, will do all they can to help towards this. Or maybe it will be done through social networking. Or via GPs (though I think this is unlikely).
Let’s keep the pressure up, building for October 2013.
I may not agree with the problem but I can offer some advice for a solution. As a media person (TV producer) who has had to respond to complaints and comments about programmes I’ve been editorially responsible for then I recommend the following;
Don’t waste time writing on the comments section of the online papers (e.g. Daily Mail). These don’t get the attention of the journalists or get taken seriously. There is no promise of a response to these sections and often your comment will just be lost in the swarm of trolls.
Do write to, or directly email, editors responsible for that section of a paper. Or contact the broadcaster showing the programme - all have departments to respond to complaints. It’s quiet easy to find the numbers or addresses with a quick internet search.
Complain about specific articles, not about general portrayal. Do it on a case by case basis. Once a complaint is upheld that editorial judgement will filter through to the rest of the papers’ or broadcasters’ programming.
Be concise, factual and specific. If possible, cite authoritative sources / organisations. A good thing to question is ‘accuracy’. Editors don’t like to hear something is factually inaccurate.
If possible have a small group of people all complain about the same article or programme at the same time. Numbers get noticed.
Remember that journalists / programme-makers deal with all sorts of complaints. Some of them, frankly, are rather nutty or trivial. Try not to come across in a way that will allow your complaint to come across as such. We tend to call these the green biro brigade.
Try to avoid referring to ‘the media’ when complaining. There are many sources, they are not all the same, don’t tar with the same brush. For example, the Daily Mail is well known for lack of factual accuracy, bad science and health scaremongering. The BBC is a completely different case - although can still make mistakes.
Make sure you know what you want to achieve before you start, and why.
Remember, a difference of opinion is not a basis for a complaint. You need something concrete / evidence.
Hope you don’t mind me sticking my late oar in - I think as Lemongrove said it is up to all of us as individuals how we present our own future to others. As a primary, but not with a brilliant prognosis, when people ask if it is cured or gone I say “I hope so”. BUT the media from the BBC and broadsheets to the Sun and Daily Mail should be responsible enough to get the terminology and information right and that should include celebrities who are interviewed. I think we all play down how awful treatment is, I was in the middle of Tax when Jennifer Saunders was reported as saying that “it was not so bad” (wanted to shout at her) and there is some bravado about “putting it behind us and getting on with life” when I can’t imagine ever putting it behind or not worrying.
Not sure about how to get the media to report accurately. Papers like the Daily Mail will use “journalists” who will whip up reaction eg Samantha Brick or the girl who had her life “ruined” by a mastectomy for DCIS (step in our shoes) as they want readership numbers (I have to confess here to being addicted to The Daily Mail online). Perhaps the only way to get it across is to encourage celebrities to go on tv/radio and talk about it as it really is rather that try to live up to the being brave/plucky/fighter label the media has already given them. There are journalists such as Deborah Orr and Christina Patterson who have done some good pieces on their own (OMG I nearly put battle) experiences with treatment for breast cancer. Writing to the Health correspondents at the BBC and newspapers may help.
I know this has got a bit heated so hope I haven’t said anything that upsets. Julia x
I was writing my last post as keyfeatures posted so it all looks a bit redundant now - sorry. Flori I loved your comment, I can join you in the pessimistic group and it sort of works for me although I don’t voice it to friends as it obviously makes them uncomfortable, they prefer cured - so I am colluding in many ways. I think that is the biggest value of these forums that we can talk about how we really feel. Reading the secondary threads in the very beginning were scary, to be honest everything was scary but you wonderful feisty women make me feel if I have to join you at any point you will be there to help and I will cope. xxx
Im a bit like flori… Im not optomistic about my future being cancer free… However i am not pessimistic either… I prefer realistic!
going from grade 1 stage 1 to grade 3 stage 1 to grade 3 stage 3b And carrying brca2 its hard to think that secondary BC wont be part of my future… However going back to the 40% chance of mets, nowadays oncologists seem less likely to say whether they think it will come back and more likely to suggest how long you will survive… eg i have been given somewhere in the region of 80% chance of still being alive in 10 years, but this is with or without cancer.
with primary cancer most onologists are treating you curatively… They hope to cure you (and if yours isnt get a new onc), but as h others have said whether this is actually the case they cannot predict… Maybe one day they will hav the technology to determine this… But for women with primaries most will go on to live a healthy life where cancer does not play a part. I think for those who wih to refer to themselves as cured if it works for you then go for it… After all at that point in time you are cured.
i frequent the secondaries sections of the forum as i like to have all the information available to me and find the support and close knit caring and sharing a valuable part of my bcc experience.
As for he medias portrayal of news… They pretty much sensationalise everything… Even the BBC… Although they might insert words like ‘can’ or ‘may’ unlike the Sun saying it will. It doesnt seem to matter much wither its about secondary breast cancer, obesity, elections or war and strife.
Hopefully though with pressure and recent scrutiny the media and press will tighten up their belts.
Sending love, best wishes and group hugs to all
lulu xxxx
Well I am pessimistic and optomistic all at different times. I have been having treatment over a long period of time (almost 24 years) and I can remember both diagnosis like it was yesterday. I have seen how things have changed over all this time in lots of different ways. So many more younger people in the ward having treatment. I was considered very young at the time I first found out I had BC, 39. There were generally older ladies having treatment back then. I came across BCC site quite by chance when I was looking for information. Having a great site like BCC helped me to discover that I am not the only person who has secondariy Breast cancer because I knew no one when I found out about my secondaries and there were no secondary support groups in my area. Also Maggie centres are a bonus to those abe to acess them.
Gettting back to the optomistic/pessimistic outlook. I think I go through BOTH over all this peiod of time. Like today I am going for MRI Scans. I know in my heart that something is not right but having been able to read/talk with ladies on here who have recently gone through similar tests helps me. Reading the press does NOT. I did an interview years ago with a local newspaper. They changeged my words completely to fit in with the article they were writing. My Mother who coud not talk to me about my BC ( I am an only child/old lady now!) and I look at photographs of her from that time and see the pain she suffered because she thought it should be her not me who had this horribe disease. But the paper upset her so much when she read it and I had to explain to her that it was not what I had said. I was so angry that I vowed never to buy the paper again. ( I have though!)
Celebrities and their press statements do not give me much hope because when any of them say they are cured it upsets me that others believe that this is so certain. It coud be so but it also may not be so and that is the hard part of the whole thing I have had to deal with. What I will say, and have siad before is that if I have learned anything it is that I have wasted too much time worrying “How long have I got?” or “Will this be my last Christmas/Birthday” etc. I believe too that we shoud not always strive too much to do things when our bodies are saying to us to rest and go to bed! Believe me I have pushed myself many times and usually end up hurting my back and then ending up in bed for even longer. We are only here once, as we al know and we want to spend our time in different ways. I am not Superwoman but I have compassion. I hope bernie Nolan hightlights Secondary Breast cancer but I wish she sis not have it. I read both primary and secondery BC threads and welcome all people on to our Secondary threads. I am saddened by the fury I feel on some of the posts and do not find that at all helpful. I hope I have not offended anyone. But we all have different views and opinions and it is good to put down in words how we feel especaily as sometimes we do not want to share our innermost thoughts with those closest to us. Val ( Should I should I not press the post button?)
I like realistic too Lulu. I am not sure if this makes sense but if I know what might happen and know I can deal with it I feel less anxious. Plus doing what I want and can do. The articles that seem to reflect the reality of treatment and emotion have often been written by journalists that have experienced it so the work is more likely to be published as they meant it to be. Had not really thought of how a paper will change the meaning of words given in a spoken interview - that must have awful Val.
scottishlass I agree entirely with you in respect of the Press - don’t want to tar them all with the same brush but they do misinterpret what people say to make a story - and you were obviously a victim of it which is par for the course. In my job I have dealings with the press and we have to be very careful what we say and how we say it as they are always looking for a ‘angle’ to make the story more interesting or more fitting with their own values. I would say to everyone that it may look like celebs who have cancer are saying things like ‘I am cured’ or a ‘year out of my life’ but in fact they haven’t said it at all in that context. Even televised interviews can be changed too if they are recorded - as they cut bits out and when they ask a question sometimes but a different clip as the answer (again this has happened to me in my job). The only way what you say cannot be changed to suit is if it is a live interview or TV programme.
Well I’m dipping in again as I’ve been thinking a lot about what could possibly be done to improve matters and make people appreciate the reality whilst giving a ray of hope at the same time.
Linking in to both Bernie Nolan’s secondary diagnosis (and I forgot to mention previously how sorry I am to hear her news) and about the negative reporting regarding breast cancer screening, I wonder if the press could be used to promote Lemongrove’s efforts on the petition for the Cyberknife machines. Perhaps if people were given the facts about secondaries but told that cybersurgery machines had the potential to help those patients, then there may be a bit more support towards them. Also, if there are so many people being ‘over treated’ for primary cancers surely this would be good reason for more cybersurgery machines to be available across the country, on the NHS, to avoid some of the more drastic treatments?
Referring to what Keyfeatures said about making a complaint about the reporting, perhaps the press could redress the balance if they wrote about the Cyberknife petition and asked the general public for support. After all, the machines would benefit more than just breast cancer patients.
Val, I find your posts are very considered and you give out a real calming influence.
Saffronseed, I think Bernie Nolan did go on TV didn’t she? Seem to recall seeing her playing things down, on a programme called This Morning, when she had her primary diagnosis. While I have great sympathy for her recent diagnosis, I do think there is a symbiotic relationship between Celebrities and the media. Celebs want publicity and programmes like This Morning are looking for an upbeat interview.
Again there is nothing wrong with giving upbeat information, so long as it is factual. So words like cured, beaten, won the battle are completely inappropriate (as is describing treatment as just a year out of ones life). The fact is, all anyone with BC canreally say (be they primary or secondary), is that everything seems fine at the moment /or not, as the case may be.
Florie, there are one or two journalists who have been pushing for Cyberknife. When we launched our charity the UKCK Network at the House of Commons, one of those who spoke about CK’s importance, was the ITN presenter Tom Bradby (because Tom’s Mum had cancer, and his family had a awful struggle to get CK for her). We have also had a lot of support from a Telegraph journalist (again because of family circumstance).
Can I ask what your wish is? Do you want the media to stop using words like cured, beaten, survivied or is it also the medidical profession and people with breast cancer?
This Morning fashion feature in October this year used women with breast cancer to model the clothes. One of them was a secondaries lady who explained that her cancer was no longer curable, but could be treated. There were also a few people with secondaries on Stand Up to Cancer night and the Sing for your Life programme.
Even if you haven’t had a BC diagnosis you might still have BC (most of us will have had it for a long time before it was diagnosed). Let’s face it, everyone with or without cancer has a terminal diagnosis…unless you believe in resurrection. Average life expectancy is 78 for men and 82 for women. Personally, at this rate I’ll be happy to make it into my 60s.
Yes, we all know we are going to die at some stage but that’s an abstract notion. Being given a prognosis of 3 years makes things feel a hell of a lot different, I can assure you. I can’t believe some of the statements that have been written here. So very insensitive. I’m absolutely fuming. We all have to deal with the hand we are given but when one is feeling poorly and looking for a bit of solidarity and support it is upsetting to read ill informed comments. I stepped away from this discussion due to an earlier post, but the poster explained that she had worded it badly and so I have been following the thread with interest. A lot of good things have been written but I will end on this note: I have tried my hardest to remain upbeat since diagnosis but have had a recent spread in my bones which has left me in a lot of pain and I’m frightened. I know what I’m facing. Please try and be sensitive when posting on a secondaries thread, unless you are dealing with the condition you have no idea. Be kind, re-read your posts and be considerate. Please.
Tawny, please don’t step away, say your piece. The whole point is that those of us with secondary BC need to let others know the reality, because for the most part the reality is not voiced, but is actually drowned out by the media. There will always be people who prefer to bury their heads in the sand, and talk clap trap about having won the battle etc, because I suspect, reducing the size of the monster helps them cope.
As I said earlier, nobody who has been diagnosed with BC (be they primary or secondary), can say they have beaten the disease, or are cured. The best anyone can say is that everything seems OK at the moment/or not as the case may be, and the media need to take that on board.