It seems to me that a lot of the available data is pretty dated.
Much of the data used by Cancer Research, for example, stemming from the late 1990s.
When are we likely to get some more up to date stats and info - anyone know?
Any recommendations of other websites etc with current debate on drug trials etc?
Thanks
Molly xx
Hi Molly.
part of the problem is the 10 year wait on stats, ie that you don’t really know how effective a treatment is until you see how patients who were treated with it have fared after 10 years, and they are now also looking at 20 year stats so there is always a lag if that makes sense.
There’s a lot of research information on the US breast cancer site.
Hi Molly
As vertangie says statistics will always be retrospective so yes it is hard to get really current information.
Two certain kinds of statistics we have…the incidence rate of particular cancers and the death rates. I think the latest available stats for breast cancer are for 2005 (2006 must be due soon) which shows about 44,000 diagnosed with bc in UK and about 12,400 dying. In general the incidence rate for bc has risen over the past 10 years and the death rate has reduced. So more people getting breast cancer, but more surviving.
So more are defintiely surviving breast cnacer and for longer but beware that 5 year survival rates can be misleading…many make it to 5 years but are dead at 6 or 7 etc.
There are two schools of thought on breats cancer (and other cancers). One says great improvements being made and that breast cancer is becoming a manageable chronic condition. Another says treatment improvements are largely incremental and the success in really finding solutions to cancer is limited. I incline to the latter view…the ‘truth’ maybe that yes there are improvements but still a long long way to go.
You can find out details of cancer trials from cancertrials.org.uk…I think
And always remember that breast cancer isn’t just one disease but many.
Jane
Thanks for that info ladies.
" always remember that breast cancer isn’t just one disease but many."
Ain’t that the truth.
Certainly the thing I have learnt since dx last month is that bc comes in such a huge variety of types - and that the stats I’ve tracked down so far are oversimplifications which don’t even begin to reflect those variables. And as such they are pretty uninteresting. The truth of the matter it seems (and people don’t like to be open about this because it is obviously a terribly emotive and difficult topic) is that there are some cancers that are “better” than others due to current availability of treatments and individual responsiveness to them.
I’m just curious to know the general direction that medical science is heading in with this disease. Given that the majority of cancers are ER+, have the white coats decided that they have got that particular type of cancer covered with Tamoxfien etc and decided to focus their attention on say triple negs? Or are they cracking on to reduce the ER+ mortality rate so that the probability of survival is increased for the majority.
What are the politics of this? Anyone know?
I would imagine the big pharmaceuticals, driven to maximise profits, would focus research on the cancer types that are most common (and responsive) in order to secure that market globally.
Molly
Hi Molly,
There are different groups of scientists and different approaches. There are some scientists who do work that it not very close to the market and they certainly are interested in understanding the mechanisms behind the different types. One recent approach is to use old banks of tissue samples to look for patterns in how people with different genetic changes in their cancer fared after different regimes. So, it’s not just developing new drugs but figuring out who benefits from existing ones.
For the scientists working closer to the market, responsiveness seems to be important. Her2 positive cancer did not attract much interest until herceptin showed that targeting this type of cancer could be done effectively and now there is a great deal in the pipeline for a breast cancer that is just 20% to 25% of the total. You would think logically that once a drug had come out that worked against a particular type that investor interest would decline because of competition in that market, but drug development doesn’t seem to work that way. The success of herceptin seemed to make it easier for companies developing anti-her2 therapies to raise money from investors, even though herceptin has greatly cut the need for such therapies. Pharmaceutical investment is considered high risk and that undoubtedly affects how innovative companies can be. Once someone succeeds in developing a drug that acts on something relevant to triple negative cancers, like p53, I am sure that there will be a lot more work on that.
I was told by someone I know who works for a pharmaceutical company that the US market is key, and that even his European employer was making decisions based largely on what diseases were covered by US health insurers. There is a great deal of political interest in breast cancer in the US (Maureen Casamayou
has written on this) and ER-negative is a very hot issue because black Americans and hispanics have a higher rate of ER-negative breast cancer and there is a huge difference between racial groups on survival, which means that there is alot of pressure to develop treatments to reduce the racial disparity. At the same time, all the money that the US government will be spending bailing out financial institutions can only be bad for BC research. But the US is a bit odd because medical research has been entrenched as a government mission since the 1940s. Politically, there doesn’t seem to be nearly as much going on in Europe, although the UK is much more heavily involved in cancer research than most.
There have been special incentives for companies to focus on rare diseases since the 1980s. It is not necessary to go for a very common disease as long as the price of a drug for a rare disease can be hiked enough to cover the costs. Taxol was treated as an orphan drug for ovarian cancer, which was not considered common enough to attract drug company production and distribution. I would imagine that if someone came up with a drug for something rare like inflammatory breast cancer that they would probably argue it was an orphan disease and just make the drug very costly.
Thanks for that Christine - it is an area which I find fascinating. Oddly enough I am waiting to pick up a copy of Casamayou’s book on the recommendation of a friend who admires her enormously.
I was reading that the FDA has agreed to work with the European drug agency (proper name escapes me) to streamline the application for orphan drug status - which can only be a good thing. I suppose I harbour the slightly irrational distrust of pharmaceutical conglomerates common to all old fashioned lefties!
Health activism (aside from personal battles with NICE to obtain medication on ther NHS etc) seems relatively low key in UK in comparison to the US. A lot can be learnt, I think, from the grassroots mobilisation of the gay community in forcing the issue on HIV/AIDS research funding.
I instinctively feel that breast cancer is a feminist issue. BC is statistically a geriatric disease. And old women are hardly prioritised in this culture. Given the hopless underfunding and disregard of other chronic geriatric illnesses like dementia you wonder if they will be content to get bc to a sustainable level and leave it at that. If the average age of dx is late 60s do they need to improve survival rates beyond 20 years? And what about quality of life during/after tx?
Talking to a doctor friend the other night he suggested that the cancer research community here in the UK was perhaps weighted more towards prevention rather than treatment at the moment. How accurate that is, I don’t know.
It would be good to get an up-to-date accurate overview of the way things are heading.
Molly
It is significant that newly dx bc patients are now given 10 year survival stats not 5 as used to be the case.Certainly when I was dx in 2006 that was the case whereas when my aunt was dx in2002 she was given a 5 year figure.
I hope I am not being irrelevant here: but I became interested in a specific statistic when rummaging around the internet and I came across a website called “Breast Cancer UK” connected with “No More Breast Cancer” which is interested in trying to get more research into prevention, rather than cure, and the line of research they seem to consider particularly important, I gathered, was about environmental hormone-disrupters.
Well I think this is all a jolly good thing. But on that website someone makes the specific claim that too many mastectomies are done (too right mate) but they said there were 53,000 of these per year. That seemed way too high to me - I estimated that with 44,000 diagnoses per year, of which approx 40% have mastectomy, there must be in the region of 16,000. I e-mailed them and they got very shirty with me, and I had to explain that I really am on their side - but they insisted it was 53,000 and said it was because of so many doubles. It still does not make sense to me. I have since found a report which says that in 05-06 13,852 mastectomies were done. Also Elaine Sassoon suggests a similar ballpark figure on her website.
The reason I ask is because bc does appear to be a political issue and the aforementioned website seemed possibly to be hinting at something as sinister as disinformation on the true extent of this. That would be an appalling thing if true. I may of course have misunderstood. I did rummage around on the HES website and thought I just might possibly have found where she got that 53,000 figure from, but if I am right about that (and I am no statistician) then I think she did misconstrue the statistics.
I would be really interested to know if you guys have thoughts on this.
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Molly…you are so right about the lack of political activism around breast cancer in the UK compared to the USA.
In the USA there’s a really influential grassroots patient advocacy organisation for which there is no parallel in the UK. Called the National Breast Cancer Coalition. It organises a fantastic programme called Project Lead which trains patient advocates to be able to challenge and question the scientific and medical community…its a kind of intensive programme in sttaistitics, research, the epideiology of bc etc. I have a friend Daphne (longer forum members like Christine will remember her) who is currently on the programme in Denver (Breakthrough Breast Cancer sponsors a couple fo UK places each year.)
On your other point…I’m also in the camp which doesn’t think the worse thing about breast cancer is losing a breast…have you read the US poet Audre Lorde on this?
One interesting book about corporate consumerism and breast cancer is Pink Ribbons Inc. by Samantha King.
Just some disparate thoughts…really good to ‘meet’ you Molly…a long time since I saw feminism mentioned on these forums and its great to read your thougthful posts.
Jane
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Hi everyone,
Some really interesting points here. I think that there is some ageism when it comes to cancer, but breast cancer does fairly well (maybe because there are enough high profile young women who have died from it that is is misperceived as a young woman’s disease). The age profile of breast cancer tends to be younger than for most cancers (brain tumours and pediatric cancers are an exception, as is testicular cancer, but that has unpleasant but effective treatments in general) and younger women’s breast cancers tend to be nastier in general. Perhaps that is why, as Casamayou points out, US breast cancer activists tend to be much younger than the average breast cancer patient. The prostate cancer charities would be quick to point out that breast cancer does fairly well among the cancers when it comes to research funding.
I am a bit troubled by the emphasis on prevention over cure. Admittedly, prevention would be great, but many of the factors that reduce risk may work only over the long-term. For example, getting higher levels of vitamin D during adolescence has been linked in retrospective studies with long-term lower levels of breast cancer (by as much as 50%), but how would they test this out - wouldn’t it take an eternity to give people vitamin D during adolesence and see what happened and what about the people who are already older by then? Also, will people use all of these preventative knowledge. There is a pretty clear link between obesity and lots of health problems, mainly diabetes and heart problems, but all that knowledge doesn’t seem to have reduced obesity rates.
As for lumpectomies, researchers have recently discovered that women with lumpectomies that leave them very lop-sided don’t recover well psychologically, so I don’t think that the whole lumpectomy/mastectomy distinction is that useful. My surgeon recommended a mastectomy because I would have been too uneven.
I am glad that Daphne is keeping active.
For Christine MH-
Just wondering if you have seen any follow up results from the Hera trial recently? I think I remember something from year after initial report but bothing after that.
All the best,
Sharon
Love the sound of patient advocates able to challenge the scientific and medical community.