Project Lead sounds interesting. Not something I have time for right now, but interesting.
I notice from a webpage entitled "International Clinical Trials LEAD: Taking the Fight Around the Globe" on the NBCC website that they seem to have just had a training session in Paris in early December and that they have an international initiative underway. It might be worth e-mailing them to find out what is planned next if anyone is interested. The e-mail address is on the website.
Daphne, thanks for the book recommendation - I've ordered it from the library. I'm interested in screening partly because I'm another screening failure, and also because I often seem to end up in "discussions" with an acquaintance who feels prostate cancer screening for all men over 50 is the way to go. I'm not convinced about mass screening for all diseases - it needs to be selective, I think.
This is all really interesting but I do agree with lyndu - in the US one has to push/fight and pay for the best treatment whereas here, we expect it on a plate as our right, for paying into the NHS. We are not so vocal in our protestations for this reason (well, it is one reason, at any rate). The NHS has lulled us into acceptance, by and large, that what we are receiving is the best.
And of course, we would have to queue.
'May I protest?'
' No, after you.'
' No, be my guest, I insist.'
Stiff upper lip and all that. We have always been the same. We don't make a noise.
So yes, Deirdre makes a very valid point, too.
There's a very good book on Screening - called "Screening - Evidence and Practice" co-written by two British experts in Public Health and Screening Programmes. You can order it from Amazon.
It tells you the history of Screening (not just Breast Cancer Screening), what makes a good screening programme, benefits and disadvantages of screening and much more, including the fact that it was Harold Evans, the newspaper editor that pushed for a Cervical Screening Programme in the UK after seeing it in the US, the disastrous way the UK Cervical Screening Programme was implemented (without randomised controlled trials), and what had to happen to get a decent Programme set up.
The book is aimed at medical professionals, students and lay people, with clear, jargon-free discussion. If you want to understand the realities of screening rather than the hype, and don't mind the price – read it. You won't find any of this openly discussed by any British Cancer Charities.
I am open minded about Breast Screening. I believe that women must be given full information about the pros and cons to help them make an informed decision as to whether to participate. At the moment I don't believe they are given enough information and this appears to be the view of the Dept of Health because it commissioned a study which resulted in a paper (116 pages!) published in 2007 on improving quality of breast screening information provided to women, including an Appendix on DCIS. The paper is NHSBSP Publication No 64.
A key reason why US Breast Cancer Advocates are further ahead than us is simply that they are a more assertive and vocal nation. There are plenty of opportunities in the UK for patient advocates to make a difference for themselves and those that come after them, but we seem far more accepting of what we are told and we don’t challenge accepted wisdom and insist on seeing the quality of evidence in the way American advocates do.
Yes I think one's views on screening are coloured by one's experiences. In my case I had 4 'clear' mammograms aged 47-53. I was then recalled from a mammogram and sent away having been told I had cysts..one of the cysts was cancer...the doctor was subsequently disciplined.
Screening gave me an incredibly false sense of security.
Because of my experience I have read a lot about screening and I do think its effeciveness is overplayed, and that women are not given full infromation about the costs as well as the benefits of scereening.
Thanks Daphne for your analysis which I think is spot on.
I think some of the difference between the US and the UK is that US patients have to be much more active in their treatmetn - they have to find a surgeon they trust, an oncologist ditto, a plastic surgeon ditto - it's a good basis for taking a very active interest int he background to bc, and in chasing up for the drugs and treatment and follow-up you feel will benefit you.
I generally feel that in the US there are more women taking an active interest in current research - but of course that may just be the effect of there being a far larger pool of women. I've known several women who've done project lead since back when I had my first brush with bc - unfortunately I couldn't spare the time from work back then to go to the US to participate - now I'm not sure I can get up the energy to dive in that deep.
I suppose one's views depend entirely on own circumstances. I was diagnosed with very small tumour after a routine 3 year mammogram, and because it was found so quickly I only needed lumpectomy and rads for 5 weeks. It turned out to be grade 2/3, so it was aggressive and if not found when it was it could obviously have gone on quickly to have spread to lymph nodes etc etc. So I'm very pleased about screening, but realise that others especially younger women do not benefit from this.
I agree with Daphne that breast screening is supported by every breast cancer charity even though the benefits are far from being proved. I'd like to see more research into whether it really cuts as many deaths as they make out, and what the money could be used for instead. In Newham where I live very low numbers go for screening. This may be because they site the van in a carpark in an area with very low numbers of women round about over aged 50 and it is also being vandalised by the local population as it is sited in an out of the way part of Asda's car park anyway
One of the reasons why UK Advocacy lags behind US Advocacy is that we don't have a UK Advocacy organisation where the strategy is led by people who have had breast cancer.
The National Breast Cancer Coalition in the US (NBCC) has paid staff, but their strategy is developed by women who've had breast cancer and that makes it a very different organisation to Breakthrough whose strategy is developed by paid employees.
There are some very fundamental differences between the two organisations. An example is the different views NBCC and Breakthrough hold in respect of Breast Screening Programmes - go to their websites (search on mammography on NBCC's and go to 25th Nov news on Breakthrough's) and check out their different comments on the recently publicised Norwegian study that proposes the theory that some breast cancers may regress without intervention. Both rightly say that the study is very preliminary, but NBCC's comments are thought provoking, Breakthrough's bland. Also have a look at NBCC’s evidence based harm/benefits analysis. There is nothing like this on the website of any UK Breast Cancer Charity. I can't think of any good reason why.
NBCC has done a lot of work to adopt an evidence-based position on Avastin (Bevacizumab) - see their website. I can't find any mention of Avastin on Breakthrough's - other than in an invitation to Tell your Story to the media on the basis that peoples' inspiring stories can help humanise abstract statistics about breast cancer and make a real impact.
Whether or not you agree with NBCC's position on Avastin, at least you get to read the background to their decision. Again - nothing like this analysis on the websites of UK Charities. I know which approach I believe can best make a real impact.
We once had a UK Breast Cancer Coalition led by people who'd had breast cancer and I wanted to join them in 2005, but I discovered that they'd merged with Breakthrough, so I joined them instead.
UK Breast Cancer Charities do a great deal of good work - Breakthrough's Service Pledge, sponsoring members to attend international conferences, Breast Cancer Care’s Peer Support ….and much more. But they have limitations for the reasons described by JaneRA and shown above.
NBCC's Project Lead has been mentioned in this thread as a Gold Standard of training for Patient Advocates and it is - some of the world's top scientists are lecturers. It would be interesting to know how many UK Project Lead Graduates are active members of the main UK Breast Cancer Charities. I think not as many as might be supposed.
Project Lead teaches advocates to understand breast cancer science and statistics, question and challenge conventional wisdom, campaign for quality research and evidence-based healthcare and have the confidence to debate issues and controversies in breast cancer on equal terms with researchers.
This seems to be an uncomfortable concept for UK Charities as evidenced by lack of willingness to openly discuss controversial subjects such as differing views on Breast Screening, the Avastin controversy and also the question of environmental factors and Breast Cancer – hence why Breast Cancer UK started their No More Breast Cancer campaign.
Yes, getting the charities together would be good, and sometimes this happens. Cancer Research UK was formed from two big charities. Macmillan and Cancer Backup have merged. In these credit-crunched times, mergers might be even more attractive.
Unfortunately, the credit crunch seems to be likely to slow things down in the search for better cancer treatments. I have it from a knowledgeable source that one of the major cancer charities funding research is expecting that its income will be down by at least twenty percent this year. And an article I read suggested that in the U.S. market the money was drying up for the small biotech companies that do much of the really cutting edge work
I think there are too many separate breast cancer organisations and they would benefit from working together. Another one I've come across is called Against Breast Cancer ABC
how much better if they could stop duplication. I like Breakthrough because of the Generations study.
My own breast cancer (Glycogen-rich clear cell) is so rare there's virtually no research into it so I think you are better off having a nice common or garden variety although there's not much you can do about it.
You asked about breast cancer organisations. Well the two biggest charities are Breast Cancer Care (BCC) and Breakthrough Breast Cancer. BCC focuses on support for people with bc and Breakthrough focuses on research into causes and treatment of/for bc. Their work overlaps and personally I think an amalgmated organisation with the benefits of economy of scale makes a lot of sense. Both BCC and Breakthrough have campaigning groups which you can join
and I have done bits and pieces of work with both charities over the past 5 years. (though being an ex Labour Party hack
I don't find meeting MPs a particularly uplifting thing to do!)
I've been to some excellent events (e.g. a research conference organised by Breakthrough, and also another reserach conferences oorganised by BCC). I also have criticisms of the way both organisations work. I think they both tend to be dominated by the safe agenda of paid staff with only lip service being given to the views of members. After a while I have been frustrated by the lack of responsiveness of both organisations(for example...I have been trying for three years to get BCC to produce a simple information leaflet on triple negative breast cancer...well I gave up trying a year ago).
I haven't worked with two other smaller organisations. One is Breast Cancer Campaign...which is also a research based organisation, and the second is Breast Cancer UK...an organisation which focuses on breast cancer prevention and asks questions about environmental links with breast cancer ( probbaly the most radical organisation...but personally I think they overplay the envionmental links so not for me!)
Hughsie...I too have heard Barbara Clark speak but find her irritating rather than inspiring. She tends to make out that she single handedly brought herceptin to women with her2+ breast acncer...this is not the case...there were many other women who also campaigned tirelessly (some of them used these forums and some are now dead) but more quietly.
I am really pleased this thread is being read by people. It is easy and free to join Breakthrough. Go on their website and sign up. I only joined a year ago and the westminster fly-in was the first thing I attended. I was so impressed with the advocates - just normal people - some had managed to get dedicated breast cancer unit set up in their area, others had contacted MP's to improve screening in their area etc. We heard Barbara Clarke talking about her herceptin battle which was very inspiring. I had never even contacted my MP before joining. In the last year I have given speeches, gone to Washington DC to lobby at capitol hill as well as going to San Antonio to the conference. I would never have had the confidence to get up in front of people before I joined. Doing something you believe in does really give you confidence.
Breakthrough do training days and you can be as little or as much involved as you want. For example, you can forward a campaign letter template on to your MP outlining one of the national campaigns. This takes five minutes. Lots of members are on research committees - often very interesting. I have joined a survivorship panel and I also review the literature to make sure it is patient - friendly. I also went to a M&S lingerie discussion day where we met the designers and came up with some ideas for improving the masectomy range. I have two young boys so only do what I can fit in.
I was struck something the leader of the American Advocacy group said. She said supporting people with breast cancer is good but it will not change a thing. You need to make changes.
Anyway, this is sounding like an advert so I will leave it at that.
Christine, and everyone else thank you for this thread.
For my own part I have always thought I was outspoken and quite capable of fighting tooth and nail for what I feel is right. Yes I am going through chemo now (2nd time) yes I at times I get tired, but if there is an organisation in the UK I can join where we can pool resources to make really a difference in getting research moved up the priority list, I will do it, after all we are fighting for our lives here, what could be more important. So how can I help?
Very interesting comments. Yes, the U.S. model is very different, but not just on the structure of government but also the role of government in medicine. Whereas Britain got the NHS in the 1940s, in the U.S. the role the government took on was research. Because government-funded research helped win World War II, Americans thought that a similar war on disease approach would work. U.S. government research spending dedicated to health research is probably about 80% of the rich country total of government spending on health research, which is probably pretty close to the percentage of global research funding by central governments. As such, government research is an excellent target for patient activists in the U.S., but perhaps less so here.
Yet, despite all this funding, the U.S. government chose not to support the early stages of herceptin, believing it was unlikely to work because similar products had failed. Herceptin only survived because its inventor, Dr Slamon, happened to have a well-connected non-breast cancer patient whose wife believed in Dr Slamon and his invention and raised the early funds for it. The innovation process is flukey that way.
Of course, the UK government still gives out money. There have been some criticisms that the way that the government gives out money for academic medical research has caused it to move into areas that don't translate well into patient care. At the same time, I think that it is necessary to be a bit cautious when getting into the finer areas of innovation policy. At times I think that U.S. patient groups (not just BC ones) have been duped into backing policies that represent the interests of big pharma rather than patients. This is one of the main criticisms that has been levelled at AIDS activists, who are not very radical anymore even though AIDS remains an incurable disease with really horrible treatment-related effects for long-term survivors. I know that a few years ago, the average life expectancy of a Western AIDS patient was ten years after diagnosis.
I think that patients advocates can play a role, but we should nick our ideas only from the smartest oncologists, such Dr Martine Piccart's suggestion that more needs to be done in trials to match drugs to patients. She mentions taxol, but I would throw in anthracyclines (an idea I have duly nicked from Dr Slamon). He notes that anthracyclines benefit only around 8% of patients and suggests that it may be only the her2-positive, topo IIa patients who benefit and even then new herceptin-based chemos that don't use anthracyclines might be as effective. This idea definitely should be researched further, since anthracyclines are very hard on the heart, especially when herceptin-based chemo is used later, and giving other primary BC patients a treatment that won't work sets the stage for secondaries.
Yes, cancer research needs to yield more and better results faster, but I am sure that the government-funded cancer researchers know this. They are under threat not just from the general financial problems facing government, but also from researchers on other diseases, such as stroke and Alzheimer's, who argue that their diseases have been underfunded relative to the burden they place on society and that cancer research hasn't offered much product for the pound.
we are also pushing for MPs to back the free prescriptions for cancer patients.
This is taken from your post. Having recently attended a 'campaigns day' at BCC and just read my BCC mag, from April this is going to happen thanks to BCC and other cancer groups.
Really interesting thread this. I honestly feel people, myself included dont get involved at the level you are as we feel out of our depth.
However there is alot more we can do i am sure.
Could you pm me with how you got started with campaigning issues and what is involved. Have just finished treatment...took early retirement with a view to travelling ...onlyy got as far as Italy when BC was diagosed so now have far too much time on my hands and have been toying with the idea of becoming more involved with issues but would rather know whats involved before jumping in with two left feet.
My point about MPs is to do with the way government works in the UK which is quite different from the USA where congressmen have a different role and the legislature has more power. I can't think of any consituency MP who wouldn't follow through lobbying about a local breast cancer issue...and attending the Wesminster fly in is easy peasy and doesn't involve much commitment..just a gentle stroll across the road and no one could possibly disagree with what your'e doing (easy to say yes to some tinkering with the screening programme...which actually isn't going to save m/any lives at all) but I also can't name a single MP who I would say is a national advocate for breast cancer patients. If there were someone I'd know their name. I've met my own MP in the place I used ot live and chatted to him about bc issues...and he helped me a lot when I was making a complaint about the Breast Unit which had misdiagnsoed me...but that help is what any good MP does for a constiuent on any issue..it doesn't mean that breast cancer is high on their own list of policy priorities.
I agree that advocacy is more developed in USA and that there are lessons to be learned from that and the UK certainly needs its own Musa Mayer or Susan Love...but the Americans haven't got research right either. I haven't got any solutions and yes I am sitting on my bum.
Maybe if more bc advocates were more informed through things such as a UK version of project lead then at least we would start asking the right questions...and one I'd start with is why the reliaince on mouse models??
I also dopn't much care about the profit the maufactuers of herceptin make. I also know that herceptin was a real breakthrough and has and will save lives...but how many years do we have to wait for the next breakthrough?
I think any discussion around these issues is a good thing and debate needs to be had. I disagree with you about the effectiveness of MPs. They are very good about representing grassroots issues which you have said the Americans are good at. In fact, the Americans do not have the same easy access to their MP equivalent as we have and are amazed that the fly-ins can pull so many MPs in to attend - more than any other charity. It is the work of Breakthrough which got the two week wait announcement out of Gordon Brown - we are also pushing for MPs to back the free prescriptions for cancer patients.
In reference to research - if we want research to be directed a certain way we need to get the funding and then have a direct say in the way that it will be done. Alot of us are on committees and panels and make sure our voice is heard. Getting MPs on board adds extra power. If you actually talk to the American advocates - that is how they get things done - they push their advocates to get on committees, research approval panels etc. They do protest but in an organised way - not much point in swinging from a roof top to get publicity if you then dont have a good plan about what to do.
Either way - the debate needs to be had - and alot more people need to get off their bums. I mean those that can which unfortunately rules out most of the breast cancer community who need their resources for getting through the treatments and coping with the emotional, physical and mental traumas. We need noisy activists but we also need people to be on those decision-making research and approval panels, we need to work with MPs to push for speeding up research approval to get new things launched for patients to actually start using and get quick benefits.
I dont think things are good enough either but talking about it is not going to change a thing. I also think constructive criticism is a good thing because we are all fighting the same cause. Yes, alot of people at the conference work for drug companies and profit is the bottom line but there are alot of researchers, oncologists and cancer specialists who are dedicated and determined and as desperate as we are for light at the end of the tunnel. I personally dont care if the makers of herceptin are making a big profit as long as I can see how much difference it is making to the her2 positive patients. I just wish there could be an er neg breakthrough at least as good.
I think it would be great if there were a project lead course here...I kow someone who went on it in States earlier this year and it sounds brilliant.
Ther reason I don't think lobbying MPs (as MPs) is particulaly effective is because ordinary MPs themselves are not part of the executive and can't affect policy change. I think it is useful for campaigners to lobby government departments and to lobby, for example, the chairs of Select Committees. MPs find breast cancer lobbyists a nice sad soft option...they need campaigning which makes them a bit more uncomfortable.
I think all the bc charieties in the UK are far too 'respectable' and behave in a very polite way on very safe issues.
Research is not just about more money...its about the type of reserach which gets done.
I fancy a bit of grassroots campaignign myself...a bit of abseiling...a bit of protest. AIDS activists in the 1980s are a good model of real patient led campaigning.
I think bits and pieces of Breakthrough's work is good but my god at this rate there won't be a cancer cure till the year 3000.
I wonder what you would like from British Advocacy? I am asking Breakthrough for CAN members to do the project lead 5 day course which most of the American advocates do. This gives you a good scientific grounding so you can understand research better and be in a good position to question the scientists. It was commented on several times by researchers and onocologists that it was the adovcates who asked the difficult but pertinent questions. I agree that the Americans are more assertive and I think that it what we need over here. I do believe that through Breakthrough we can drive that objective forward and we need assertive, critical people like you - otherwise we will be pink, fluffy and useless.
Breakthrough advocates now have a presence at major research conferences as well as at all the party political conferences. We are involved as patient reps on all the big research projects - from the planning stages throughout. I think this is essential in keeping breast cancer high on the policy and research agenda and raising the profile.
I agree that the Americans are way ahead of us - which is why we need to copy them. As an advocate I am in a much more powerful position with alot more credibility with the Breakthrough organisation behind me. I have met a few loose cannons at events who can only talk about their own personal experiences and I do not think this is helpful. I think as an organised group we have alot more clout.
With reference to your comments about MPs - I think they have alot of respect for breakthrough advocates and know they will be worked hard! I was contacted by my local dedicated breast unit because the hospital were threatening to close it and make it a mixed surgical ward - big no no for breast cancer patients I felt. I e-mailed my MP who immediately contacted the chief exec of the PCT and surprise, surprise a week later I was informed that the plans were not going ahead. I do think that if I had contacted the chief exec just as a concerend patient I would not have had the same response.
I feel that it is difficult for breast cancer patients dealing with a horrible disease to go out there and advocate but I do believe that we can achieve alot. Personally it is painful to have to listen to the fact that there are no miracles on the horizon and I do not like alot of the pink rubbish. But the government are not going to fund the research - so we need to do it ourselves. If that means flogging badges and hassling MPs then so be it.
Hughsie...With all due respect to you and Breakthrough Breast Cancer the advocacy movement in the UK is way behind that of the US..there is nothing anywhere near as radical as the US National Breast Cancer Colaition. I have been to Breathrough's Westmister fly-ins...the one in the year of herceptin was exciting but otherwise they are bland polite affairs. Breakthrough has led the research I mentioned in my earlier post...I and other triple negative women from this forum wrote a letter in support of Andrew Tutt's trial a while back. But this is all just peanuts compared to what needs to be done. Breast cancer activism in the UK needs to drop its respectable image and get really radical and innovative.
I was a member of CAN but found everything unbelievably dull and pink. Meeting MPs hardly constitutes a strategy for radical action.
I have not blogged for a long time but would like to say I am a triple neg advocate and I have just returned from the San Antonio conference. There is a grassroots active advocacy in the UK and it is through Breakthrough Breast Cancer. Myself and another advocate attended and we met up with lots of American advocates including Musa Mayer and others. The Americans are along way ahead of us but we are catching up. Advocacy is very active within Breakthrough but we struggle to recruit members. We actively campaign, meet our MPs and get involved in research issues.
Please get involved.
I know that five years ago 'triple negative' wasn't a recognised term....but one problem is that 'triple negative' isn't really an accurate term because there are many different kinds of triple negative disaese...triple negative merely describes what tumours haven't got receptors for, not what they have. How are BRCA1 and BRCA2 trip negs different from non BRCA cancers? How is basal cell trip neg different from non basal cell? Lets hope the MUC-1 research goes somewhere.
One of the trials fror trip neg cancer in the UK is the very hyped trial (hyped by Breakthrough) comparing taxotere to carboplatin in metastatic trip neg breast cancer. Given that most trip neg metastatic patients get both drugs at some point in their treatment anyway I can't see why there's been so much hype about this??? (and neither worked for me she says bitterly!)
Progress is indeed way way too slow.
I think that the problem is that they are still trying to figure out what triple negative is, what drives it. They have made progress in her2 and hormone-positive because they understand what drives those cancers, which led them to develop targeted treatments. They are still struggling to find what drives triple negative, although there was a SABCS panel that found the MUC-1 target in 92% of 50 triple negative patients sampled. There are anti-MUC-1 vaccines in trials already, just not in Britain as far as I can tell.
And triple negative has come a long way. Five years ago it wasn't even a recognised term and now there at least 27 trials open that study the effect of treatments on triple negative breast cancer either on their own or incomparison with non-triple negative. 15 trials are for metastatic cancer. The problem is that there are very few completed trials.
From what I have heard there was a lot of grassroots activism at the conference, including patient organisations. And researchers do seem to be taking on board the criticisms, such as the need to study metastasis. The problem is that progress is very, very slow.
Browsing the blog and I feel angry. This is the top cancer conference in the wrold and how little of substance there actually is. And yes the only thing about triple negatives that I can find is the preliminary report from a PARP inhibitor trial which I've mentioned on another thread which simply finds that PARP inhibitors are safe (never mind we don't know whether they work or not...let you know next year). Even stuff on aramatase inhibitors ( a favourite area of reserach for young reserachers wanting quick career advancement) doesn't answer crucial comparative questions.
Where is the grassroots activism and the campaigning for real improvement, real change, real development...how many more of us have to die before effective prevention, treatments...and dare I say it, a cure, are found??
Yes, triple negative is a huge and obvious hole in the research budget - browsing through the listing of abstracts, there's virtually nothing there. Quicker and more immediately profitable to tweak another hormonal drug, sadly.
I've read this too. I think it would be great if we could get ourselves such an advocate this side of the pond.
Preliminary is a polite word...where is the research on triple negatives please? Women with triple negative mets are dying now..and quickly...
Thanks for link to blog. Musa Meyer is great.
Excellent! It is good to know what she thought the highlights were. Nice to see the new emphasis on metastatic cancer, but I think it should be said that the really promising possibilities at SABCS were for those stage IV patients who were either her2 positive or hormonally positive. The research on triple negative stage IV seemed to be more preliminary.
Musa Mayer has an interesting blog from the four days of the SABCS - comments on breast imaging, strategies for mets, hormonal therapy in early bc. She's a very good writer and worth reading (as are her books).
The blog is at www.crmagazine.org/archive/Pages/CRReportsFromSABCS.aspx and if the link doesn't come through google sabcs blog mayer