Personally I totally agree that BCC are not committing sufficient effort, resources,or time to SBCAD. Also as someone else has said, they seem to be confusing the term Secondary BC with Second Class Cancer Patient.
Perhaps one of the reasons for this is that BCC regard Primary BC as a better money spinner. After all, it must be much easier if those pink clad fund raisers can have a good old knees up at the same time as they're raising dough.. After all, bringing Secondary BC to the party might put a dampner on things.
The other reason could be that many of the issues of concern to those of us with Secondary BC have political roots, and maybe BCC don't want to get their hands to dirty dealing with these problems. After all they do have rather a cosy relationship with some Government organisations (for example they are NICE stakeholders, and they actually receive funding from the Department of Health). Similarly, if they were seen to be critical of certain polices they might put off certain fund raisers.
Whatever their reason, BCC are clearly not listening. Maybe this October the 13th we should all be standing outside their offices in London, getting press coverage, and writing letters to News Editors.
We are marginalised, side-lined, ignored, and abused enough by the powers that be already, without an organisation supposed to prevent this joining in as well.
Interesting history to the charity and they are a bit more on target. However they aren't really doing anything to treat mets, just prevent them in the first place. The vaccine may help us, but what about the tumours we already have? It is a move in the right direction though.
Agaisnt Breast Cancer is a small Oxfordshire charity which concentrate mainly on secondary research: This is from their website:
Today, Against Breast Cancer funds pioneering research by expert clinical scientists at the University of Westminster in London. They use our exceptional collection of breast tissue and patient samples to identify markers that can detect the re-appearance of breast cancer in women already treated for this illness.
I once asked, i think it was Cancer Research UK, if I could donate only to MBC research but they would only allow that if I had thousands to give. I would be happy to support any Metastatic research for any form of cancer but the spend so little on it I don't donate anymore ... also got fed up with their constant requests to increase the amount I donated.
The "history" link that I gave in a previous post has a link to The Guardian's
obituary of Betty Westgate, founder of Breast Cancer Care.
Here are some quotes which give interesting background information.
"In 1968, [she] had a biopsy for a lump in the breast. It was diagnosed as benign,
but a week later she was told it was not, and that she would be having a
mastectomy. She knew little about breast cancer, and when she asked a doctor about
the operation, he reacted as though he could not understand her need to know.
Later, after five weeks of radiotherapy, another doctor told her how marvellous it
was that women could survive five or even more years after a mastectomy.
Resentment and anger at this casual death sentence fired Betty with the
determination to live for another 30 years. The myths, inaccuracies and
superstitions surrounding breast cancer led her into a major reading and learning
In 1972 she founded Cancer Education Voluntary Service, offering a talk called
"Lumps and Bumps" to groups. From the questions asked, she recognised the need for
an organisation giving non-medical help and post-operative information. Since it
did not exist, she set up one herself, and called it the Mastectomy Association.
In the 70s, post-operative women were advised to stuff handkerchiefs, cotton wool
which disintegrated, or even tights into their bras..."
Looks as if we now need a new approach to metastatic BC, a new "Betty Westgate" (she lived to be 81!) This is 2013, not the 1970s.
Good idea, a tick where you want your donation to go...bit like the Waitrose green counters/discs.
And I like the soapbox too.
I agree with everything you say - don't be embarrassed about the soapbox.
Yes. People think their money goes towards a CURE. That is what they want. So awareness raising needs to go into Where do you want your money to go to?, Which charity funds research and campaigns for support for research into all levels of the disease and not this feelgood, buy a pink ribbon and pay the rent for one or other breast cancer charity.
I think I may have been on bcmets at one time. Will have to check it out and see.
Beanbob - people think they are giving to find a cure. I have spoken to some people recently and they have been really shocked about the lack of support and funding for Metastatic Breast Cancer. Internationally 3% of breast cancer research funding goes to Metastatic research. 97% goes to Early Stage BC research. 30% of those who are diagnosed at Early Stage BC will progress to having MBC and another 5-10% are diagnosed already with MBC.
People assume that the money they donate goes to finding a CURE for this disease, that is why they donate, that is what the publicity is implying. The biggest breast cancer charity in the world is the Susan G Komen Foundation in the US, names after a lady who died of MBC and founded by her sister, spends as much on office furniture as it does on MBC research. The have been going for 30 odd years and last year was the first time they featured someone with MBC on a poster. Breast Cancer has become about marketing and image and new logos (BCC anyone). It is about jobs for charity careerists. The only BC charity I support is METAvivor.org which is in the US and trying to go National over there. They give 100% of the money they raise to fund MBC research. Their budget is tiny by comparison to the big guys though. But then pharmaceutical companies spend more on marketing than the do on research and development.
Sorry ... on my soap box again ... I'll shut up now ... Vicki xxx
Hi Alison, a huge number have left the forums just lately so something must be very wrong.
I'm sorry to read of your friends, it's a sad, strange feeling when you're the last one of a group. But I hope you don't leave, I often take breaks and feel better for doing so.
Thank you for the links mrsblue. Vicki the pic was surreal. Are you on bcmets? I don't post there but I often read.
i have been thinking about fund-raising and it has taken a while to reach a view.
Back in the innocent days when i was running i raised thousands of pounds for BCC. The most generous donors were people who had lost mothers and wives. they wanted all of us to free of pain and disease.
So, back to the survey idea - what do donors think they are giving to? Cure for the disease probably. Support for everyone certainly. Would they be horrified how little gets spent on metastatic breast cancer? Their money may not be being spent how they expected. If so, then there is a legitimate reason for BCC to reallocate resource and money.
Tawny, never mind BCC, WE need your friendship! I went to funerals on consequtive days in July for friends and one was also a colleague at work.
In the US they use the term Metavivor for someone who is living with Metastatic Breast Cancer. Not overly fond of it myself, but at least it is more fitting than being a 'survivor'. Where are BCC HQs?
The saddest thing is that 'they' just don't get it. Quick enough to quote how many die each year and to take donations based on this statistic, the rest of the time we seem to be of no use to them, and even a bit of an embarrassment because we are viewed as those who filed the Pink Ribbon Test. I ain't failed anything BCC! If anything it is the mainstream breast cancer community who have failed us.
One lady I knew once went to a breast cancer support group and after she said she had MBC NO ONE would talk to her. She didn't go again. These people should be ASHAMED of themselves.
Don't go Tawny, I'm just starting to get acclimatised here ... we need you ..............
I actually tweeted Jennifer Saunders a few minutes ago to ask her how she was misquoted in her interview. I've always considered her to be an intelligent woman and am very cynical about her protestations. Today, on Lorraine a woman with secondaries (again, I never want to offend the participants) referred to herself as a breast cancer 'survivor' - as part of their donate a bra campaign.
Is it just me? Secondaries and survivor do not belong together. One could describe oneself as 'living with metastatic cancer/ secondaries'; but we can't label ourselves as survivors. I hate the word 'survivor' in this context, anyway. Today I found out that another young woman from the launch campaign has died. Today was her funeral. I am extremely angry with BCC - they have let us down and the fact that the only responses we have had have been so obviously cobbled together makes me sad and frustrated.
I've lost 5 friends to breast cancer. Of the original small group of friends I made on that first launch, I am the only one left. I feel hurt and alone. I am embarrassed by this year's offering. I've attended focus groups, been on the radio, modelled for one of the brochures, been a vocal campaigner and yet have not been contacted at all for over a year by BCC. My friend who has just died raised thousands of pounds for BCC. It is shameful.
An idea occurred to me that we should all march to the head office on the 13th...but it's a Sunday and no one will be there!
So disillusioned and seriously need to make a decision whether to be a member of this site any more.
You wanna see what Pink is like in the US?
These links give info about the history of BCC.
The last eight to ten years of 'awareness' has sugar coated breast cancer beyond recognition. We only have to look at the main topic for Oct. 13th, body awareness. Forum posts from those with primary cancer giving up a treatment often end with 'if I get a recurrence I'll deal with it then.' I don't think I've ever read 'if I develop secondaries and die..'
I'm ALL for questionning treatment and questionning the quality of your life over the quantity of your life. But I do think this new branding of breast cancer has taken away the seriousness of breast cancer.
That you cannot move for awareness in October along with the fact the great majority still do not know breast cancer is incurable speaks volumes!
Everything has been set up to deal with Early Stage BC because no on ever seems to have given Metastatic BC any thought. You go over the line and you become a non-person. I wonder if its focus really was Early Stage BC, or whether that was all anyone has ever given any notice to.
The whole breast cancer movement is so geared to 'get a mammogram', 'early detection saves lives' and so on that it has almost become more about image, branding and marketing, rather than about the reality of breast cancer. Liz Hurley dressed in Pink with her contracts with Este Lauder cosmetics is NOT breast cancer.
Thinking about it Jennifer Saunders diatribe about people wearing cancer as a badge (see the seperate thread) is very cynically timed because she has a book out about her life, which must include her breast cancer dx and treatment, in October. Breast Cancer Awareness Month. Coincidence? I think not. By doing this she is wearing cancer as a shield rather than a badge, because she seems to be using cancer.
Nearly 8 in 10 people in the UK in a survey didn't know that breast cancer could be incurable! http://www.medicalnewstoday.com/releases/262209.php So what exactly is 'Awareness' doing?
Oops, on my soap box again ... and it's now yet 5.30am!
I never knew this mrsblue, perhaps it explains why all things connected to stage 4 take so long to progress?
I did wonder whether we should start a type of wishlist beanbob.
I hope BCC are reading this thread and are willing to change, to reflect the fact that so many more people are living with metastatic breast cancer. That is a good sign; treatments are out there and getting better. There will be more people with mets in future. If I were them I would start with a survey to find out what we do think and what issues matter to us.
As I understand it, the charity BreastCancerCare was originally set up (under a different name) to support those with primary bc, probably at a time when there were fewer treatments available, so that not many women lived for years with metastatic bc.
Now it seems to be time for change...
I wonder if anyone from BCC ever reads these posts and think 'Hmm something's wrong, we're a big, probably the major breast cancer charity in the UK yet these women are always trying to get this, that and the other started. Perhaps we need to look into why?'
Hi vercors, have just sent you my email address as I don't use facebook..x
Know what you mean about an old PC. I had no choice ... left my computer on and went downstairs to get the washing out of the machine about a year ago and when I came back ... blank screen. Unfortunately it fried the big project I had live on screen, but I was able to get back other information and now have an external drive to load things on to.
I use Skype occasionally with friends in the US and Canada and a friend who is always buzzing around with her husband working in Saudi and children etc. Not too good with it though!
Hi Vicki, my pc is ancient and I've been putting off getting another so perhaps I should but can't skype at the mo.
Hi Vercors, it looks really good...how can we help? Would it help to pm you?
I have been on a committee before. We would need to try and find some non-metsters to have some continuity, sadly, but I think it should be mainly run for and by those with Mets. The trouble is getting people to volunteer to do this.
Are any of you on Skype?
I have long thought about a Mets Charity and I might have a word with the fundraiser at the college where I work as she might have some ideas.
Don't know what the paperwork would be like ... you know Governments.
Hi Julesie a MBC charity would be marvellous. Perhaps it's the only way...does anyone have any background, know the ropes?
Hi all, I've been using the mets forum since 2004. Between 2004-2006 a large group of us tried to raise the profile of stage 4. A few years after this some went to Westminster, with BCC. Others broke away, we started our own groups, had meet ups. One member started bcpals. There were new meet ups, a late friend's husband put a site together.
Raising the profile of stage 4 has always been a battle. So many articulate, bright, funny women have tried to be heard and to be honest none have ever got very far. Nearly everyone I knew from the beginning is dead. I feel sad when I recognise the frustrations posted here. There's so much more that could be done. I know my late friends would be posting and protesting here just like so many of you. I wish I could end this on a note of positivity. All the money that friends and family members have donated in memory of past forum members. Why does Stage 4 still get so little attention? My friends were past caring about body awareness, just like so many of us here they just wanted to live longer to see their children grow up.
I see so many newly diagnosed here now taking up where dead friends and now very ill friends and me (tired and jaded by it all) left off. I know they would be cheering you on..I'll wave my stick (blasted bone mets) perhaps mostly from the sidelines. But open to any new ideas and where I could be useful. It's a hard nut to crack.
Telegraph - posted last week - worth a look, I think.
This all sounds rather like something has been chucked together at the last moment. After all BCC has been advertising its main campaign for weeks now.
1. 13 October is on a Sunday this year which means that the opportunity to get something out into the press on the day is limited by ...
2. The fact that the Press, and especially the Sunday papers will have been working on, and probably finalised their BC stories for feature articles and supplement Magazines, for quite a while now. The ideal on a Sunday would be a feature in a Sunday supplement but they may already have been printed because they are planned a long time ahead.
Since MBC isn't a breaking news item and therefore reporters will not be rushing to find out about it, shouldn't all of this have been done a lot earlier? It feels more as though you have done things for the 'important' and Pink side of breast cancer and your big fundraiser of the year and as an afterthought have turned your attention to something that few people actually have any awareness for.
I guess BCC hope I will shut up and go away, but over the years it has occurred to me that no one is really interested in helping and supporting us. Nothing is offered to us, we have to try and hunt it down. No one wants to show that we are the real face of breast cancer; the reality of what this disease really means. We truly are secondary in the thoughts of the Pink breast cancer community and that is actually quite heartbreaking, especially for someone like me who lives alone. There is nothing in the UK that makes me feel 'at home' and valued by breast cancer charities and communities so most of my connections have been with organisations in America, and that is sad.
Hi Tawny, I wasn't part of it but I remember the 2010 event and how excited people were about it.
It's such a shame. x
Sorry, and just one last rant "there will be a call out-out for people to share their story". Um, when? Secondary breast cancer day is in 13 days and the day itself is a Sunday!!
Well, it sounds absolutely lame to me. Sorry, but it does. I notice one secondary lady on the "Body Confidence" video. Absolutely no disrespect to her (nor to anyone else who participates) - but she is referred to as a 'survivor' on your Twitter page. Surely secondary and survivor do not go hand in hand? How is this debunking the confusion surrounding secondary breast cancer? If it wasn't for the helpful advice from fellow patients, I think I would seriously consider abandoning this site now.
It makes me very sad to think of several women - who are sadly no longer with us - who proudly put their faces and names to the first secondary campaign in 2010. It felt important. I was there. I now feel sidelined.
I think BCC should be ashamed of this campaign, I know I am.
well said vicki you have put down what most of us think
i also get mad when i give for test tubes and other bits yet can not get the meds due to nice i often wonder why i bother donating at all except it will help others and hopefully stop them getting to stage 1v
Thank you, Anna. A good start, I'm sure, but I choose not to use social media, and "Thunderclap" is not notable enough for a Wikipedia entry.
What about newspapers? radio?? TV ads??? - or are BCC's inputs to these media embargoed until 13th?
Thank you for your questions about our plans for this year’s Secondary Breast Cancer Awareness Day, which takes place on 13 October.
The focus on the day, as for the month of October, is raising awareness. We’ll be highlighting the issues that people living with breast cancer face.
We will be promoting the statistics for secondary breast cancer and highlighting the lack of support, including the lack of secondary breast cancer nurses. The message will focus on the harsh reality that secondary breast cancer can be treated but not cured, and therefore we want to challenge the lack of understanding in the public about what this diagnosis means. There will also be a call-out for people to share their story, as we have found that this can be an effective way to engage journalists with the issues as understanding is low.
To give the public an overview of the disease and the key issues, we’ll be using a new infographic that illustrates facts and statistics about secondary breast cancer. We’ve found infographics an effective, ‘shareable’ way of raising awareness of a range of issues and we’ll be encouraging people to raise awareness by posting and tweeting about it on social media.
We’ll also be encouraging people to take part in an online ‘Thunderclap’ to reach as many people as possible on the day. Last year - the first year we used the Thunderclap - 426 people took part, reaching nearly 300,000 people plus retweets. We significantly increased mentions of SBC on Twitter during the campaign: it was mentioned nearly 3 million times – a huge amount. Mentions of secondary breast cancer on Twitter originated almost exclusively from our campaign. This year we're hoping to increase this and will be encouraging more people to take part.
We’ll also be running two special Live Chat sessions just before and after the Awareness Day. The theme for the Live Chat session on Thursday 10 October will be the impact of living with secondary breast cancer, and on Thursday 17 October it will be dying. Both will be take place from 2 to 3pm. We’ve also have dedicated time and space on the forum on Sunday 13 October to share and contemplate the impact of SBC.
The campaign web pages will launch on Friday 11 October with an email to all our supporters to help raise awareness by joining the Thunderclap and sharing the infographic.
I hope this update on the activity we have planned for this year's Secondary Breast Cancer Awareness Day helps.
We’re listening to all your comments and we’re committed to reviewing next year’s Secondary Breast Cancer Awareness Day activity based on your feedback here.
Thank you all.
BCC, WE NEED YOUR RESPONSE!
"It's only one day, normal service could be resumed afterwards" Yes, I know what you mean 🙂 but the whole point is that we have to live with metastatic breast cancer EVERY DAY.
I completely understand why pink washing is used. It brings in huge amounts of money. But you would hope a day especially dedicated towards metastatic breast cancer would at least try to tell it how it is. It's only one day, normal service could be resumed afterwards.
Another well done to Vicki!
Secondary breast cancer victims are not second class citizens, but are amongst those who suffer the most.BCC does some good work, but maybe there should be a stronger second "wing" within their organisation , which would champion the causes of secondary ladies?