San Antonio Breast Cancer Symposium blog

Public Archive
21

Nikki

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.

Jane

22

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.

Mole

23

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

24

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.

25

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

26

Hi!

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.

27

Daphne,
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.

Lyn

28

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.

Jane

29

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.

30

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.

31

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.

Lyn

32

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.