Well if the 10 year survival statistics that I posted a couple of days ago were worrying the five year survival statistics for stage 4 BC published by the NHS on the 13th April 2011, are even worse because they say only 10% will survive for five years (see link below) . This makes me ask again, If Anderson MD in Texas can achieve a 10 year survival of 23%, why can we only achieve a five year survival of 10% ?
I don’t want to upset people with this information. The reason I am posting is that I actually care what happens to others, and am concerned we are not getting the treatment we deserve.
Hmm… that one’s just snuck in there hidden in the middle of a paragraph towards the end.
I quite agree, we need to see what is done differently in places like Anderson that makes the difference. Is it because the treatments are different or is it just that they gather statistics differently? There are so many lies and deceits that can be created with statistics and it’s possible that we’re comparing apples with elephants, but even if that is the case, those differences should be identified.
Hello Choccie. That’s the law degree in me I’m afraid - we tend to notice the small print.
Anyway, with regard to your point about apples and elephants. Both the Anderson stats and the stats reported by Cancer Research (in my other thread), may not be reflective of the general population, because Anderson was based on it’s own patients (rather than the US in general), and the stats provided by Cancer Research refer to records kept on patients diagnosed in the Midlands (although Cancer Research suggest the sample is probably representative of the UK as a whole). However, The Anderson stats were based on thousands of stage 4 patients up until 2004, and the Cancer Research stats also referred to stage 4, and was updated in 2004. I think it is fairly well accepted that survival rates in the US are much better than here for all stages of BC (although not so good for the uninsured of course).
Thanks for sharing these stats and for highlighting the small print (I’m not a small print person!) - makes the need to take responsibility for sharing ideas on treatments with our Oncs even more important.
Fran
Lesley,
Are there details of what these treatments are and what people should be pushing for?
I am an academic and statistician and I really admire the way in which you want the best for other people but I think the statistics themselves aren’t really the important part of this. I think they probably are apples and pears (So for example, if I understand it right the Anderson Centre is the leading cancer specialist centre in the US ( a broader base sample in the US might have lower prognosis stats) vs a broader set of NHS sets rather than a comparison of figures just say for the Royal Marsdon or wherever we deem our best centre to be).
If I understand it correctly, what you are trying to get across is that there are “better treatments” or better drugs behind the numbers and the implications are that we are behind in receiving these (possibly on a basis of cost through the NHS?).
Perhaps a way of moving this forward so that the bc ladies on here could benefit might be to list where our best centres are, what treatments they offer which aren’t broadly available, what treatments Anderson Centre is using which we don’t have and what stage or trial/license they are at here and then people might have more leverage to press for the treatments which might benefit them?
The stats alone can be seen as depressing, but the possible new treatments which are working, things we should be lobbying for, those things change futures.
I’ll start the ball rolling:
I know about cyberknife and well done for pressing for this to be more broadly available.
I read somewhere about agressive treatment/surgical intervention for some stage 4 cancers at the Anderson centre.
Are there different drug/chemo options too?
Is it about speed of treatment? Surgery?
What else?
I fear its all down to money, we live in a society that is greedy and selfish. The bankers take the money sleazy politicians take the money for second homes. This gov. is about to change the health service to allow gp’s to look after the money. Its never going to work for the greater good of the NHS at the moment.
My onc explained that in America the drug companies push things through as it is money orientated where in this country we have dear old NICE preventing us getting the drugs that they get in America.
Just my thoughts without going into great depth lol.
Hatty, I think you’ve probably put the problem in a nutshell - it’s a political problem, and I think the only way it will change is when we all join together and jump up and down.
Mary-grace, I have a link to an article for you (below), that may be of interest, since it gives a more general comparison of the BC survival in the US and the UK. Our survival rates are still dismal by comparison.
dailymail.co.uk/health/article-136377/US-v-UK-The-breast-cancer-survival-stakes.html
I sometimes read of our surgeons refusing to remove secondary cancers, despite research showing that this increases long term survival. Seems some of them want to see massive double-blind trials and full results before risking it on smaller trials that all seem to show big benefits.
Money? Risk averse? Don’t know. But if it’s a best chance, I think people have the right to expect that someone would try to offer it.
Absolutely Amber - totally agree. Also, do you know that NICE guidelines on the management of stage 4 BC suggest that doctors should not biopsy secondary tumours. This is despite research in the US, which shows that around 30% of patients are treated inappropriately, because their treatment is based on the profile of the primary (and secondaries frequently change their receptor status). I’m afraid we only seem to be interested in research that saves money, and not research that would involve spending it.
So we’ve got:
Press for curative treatment
Remove secondaries
insist on biopsy of secondaries in case they have different triggers (does that depend where they are, can they all be biopsied?)
Targeted therapies
I don’t much care about different stats, more whether there are practical treatments people can push for if they find themselves in this situation to improve their prognosis…
I think we can push treatments to a certain extent if we arm ourselves with the right knowledge and have a medical team prepared to work with us. I had a mastectomy last year even though I have lung mets because of increasing research to say that removing the primary can increase survival. My surgeon did her own research, and agreed to operate. Now surgery is considered for people with primary and concurrent secondary diagnosis. I also learned that at the Christie, it is now standard to biopsy lung mets if possible to establish hormone receptiveness etc, which I had to really push for 4 years ago, so care and treatment is changing. If we all ask the right questions, we can affect our treatment.
Nicky
Mary Grace, all those are important, but the most important thing is lobbying the policy makers. We need to form an effective and united campaign group to make a fuss.
Mary Grace - the aggressive treatment for Stage 4 at the Anderson centre is markedly different from the approach taken by the majority of oncologists here, and I’m convinced it is this that accounts for the difference in survival rates. Whilst I don’t know what the Anderson protocols are for patients diagnosed with very extensive mets, but for less extensive mets they do the following, if the patient is strong enough:
Surgery to remove primary tumour, chemo and rads. For the mets, removal if at all possible by surgery, ablation, Cyberknife etc as appropriate. If it is not possible to remove the mets, then chemo or the various targeted therapy drugs like monoclonal antibodies (Avastin) are available. After all this, then the usual hormone therapy, bone drugs etc. They also give lifestyle and diet advice. When new mets pop-up, they treat them in the same way.
Now you might be lucky enough to get some or all of that in the UK - I did, but only because I’m extremely fortunate to be a private patient and because I did the research and made a case for aggressive treatment, overcoming the resistance of one of my oncs. We would have self-funded if necessary, and probably will have to in the future, as I’m unlikely to get insurance funding for any more Cyberknife.
Contrast that with the UK. There are patients such as Lemongrove who were Stage 4 at diagnosis with bone mets (as was I), and who are offered only hormone therapy and bone drugs. No treatment at all for the primary, and at best a holding therapy for the mets. Whilst I’m sure cost is a huge issue, I’m also convinced that many oncologists have a palliative mindset when it comes to mets, and just don’t believe it’s worth doing any more. Nicky - I’m delighted that you managed to get surgery with your lung mets but isn’t it interesting that you were aware of the research that it was beneficial and your onc wasn’t? I read so many times on this board that oncs are all knowing, that if they haven’t told us something then it can’t be true. Well I’m sure there are some paragons that read every research paper ever published - but then they’d be far too busy doing that to ever see a patient. Some oncologists are exceptional and willing to embrace new ideas, but many will just be aware of NICE guidelines, and as we know these lag years behind new developments, and are driven by cost considerations.
Whilst I do think pressurising our oncs does help a tiny bit at the margins (I hope mine will now look more favourably on other patients in a similar situation) I suspect real change will only happen when oncologists themselves pressurise for the tools to do their job better.
finty
This thread is now moving in a way that I appreciate much more.
Clear summaries and positive ways forward.
julie
Thanks Finty, that is a really useful list.
Lesley, I agree absolutely about lobbying and I’m sure it probably is about money and politics but we have to be clear what the lobbying priorities are. Collective lobbying is important but I work in management where top-down and bottom-up together sometimes works best of all. I am just thinking that bottom-up, getting individuals to ask today, tomorrow about treatments that improve their prognosis is faster and creates a groundswell. We can also quote each other’s hospitals as precedent. I asked for something minor the other day and knew it had happened elsewhere. When the onc said “where was that” and I told him, he used that to argue the case with his own PCT.
Knowledge of what has worked for others in similar positions strikes me as the most important part of this. To view the Anderson Center as a “best practice” case and see which approaches could be adopted or influenced. To me the stats come in to help build arguments why prognosis is helped by taking a particular approach, why someone would benefit from a particular approach.
We can individually influence decision-makers if we are armed with information, can ask the right questions. I am pushy and dig around in facts and figures, treatment options, ask why or why not. But not everyone does, or dares too. My mother died of bc. She and my father never questioned the doctors believing doctors knew best. There may well be other people like that around. I am often surprised how many people read but never post. If we make explicit the list of best practice that we have accumulated from Anderson Center etc then we may spark an idea or discussion which changes someone’s life now and in the future, as well as pushing for overall changes in treatment, which might take longer.
In some cases it isn’t all about money, there are people with private health care who still don’t get a treatment if they don’t know to press for it because it might help their situation.
There are others - like me - who might even self-fund if something could make a major difference to their prognosis.
Then there is helping others to have the information to ask the right questions at the right times. I am a believer in giving it a go, asking the questions, evaluating the options but if someone is less assertive why should they get lesser treatment?
Most conditions, primary and secondary, seem to have different treatment options. Particularly if something is less common in this country, the onc might not think of it straight away. It might take a second opinion or a referral to another bigger cancer centre but there are a range of treatments which might be possible if we ask the right questions.
Anyhow, I’ve climbed off my soapbox but I think we can tackle the same concern from different directions and maybe that is the best of all approaches xx
One of the reasons I feel so strongly about the disparity between our survival rates and the Anderson Centre, in because I have had to fight so hard to get the sort of treatment on offer at Anderson here (even though it is demonstrably more successful). I have also spent quite a bit of time trying to assist others who are also battling to get the treatment they want, and it just makes me so sad to hear the desperate struggle that people have to go through. It’s hard enough trying to deal with this appalling disease, without having to fight for treatment as well.
I’m very lucky that I found my way to a decent hospital, after initially being told that all I would not get chemotherapy, and would just receive endocrine therapy (even Bondrenat would only be available if I agreed to go on a trial). I was originally told that as the cancer they biopsied in my lymph nodes was very aggressive, I would probably only survive between 18 -24 months (or until endocrine therapy stopped working). I took myself elsewhere, where it just so happens they have a very similar treatment model to Anderson, and here we are 17 months down the line, and I’m alive with no progression. I’ve had aggressive chemo, conventional rads, Cyberknife stereotactic rads for my skull mets, and now I’m on endocrine therapy and bondronat to stop it coming back.The cancer in my breast and lymph nodes was surgically removed, and the mets in my skull were treated with Cyberknife, so to all intents and purposes I’m NED (except we all know there are cancer cells in my system that will probably come back).
Another difference I noted from the US is that they start screening aged 40. I know there are a lot of women on this forum with no family history who were completely taken by surprise to be diagnosed in their 40’s (myself included) I know they burble on about breast tissue being too dense in younger women but they had no trouble in seeing my lump!! I know it’s too late to help us but I do believe that if we had the resources to implement this that many lives would be saved in the future.
Yes Schmooley, their detection rate is much better as well, but the survival stats relate to people diagnosed with stage 4, so early detection wouldn’t effect those stats.
Reading this thread with interest as someone living with stage4(3years on from stage 4 diagnosis and currently still NED)and acknowledging that much needs to be done to try and improve treatments,attitudes etc. but I wanted to point out that as the NHS or NICE have not been formerly recording those diagnosed with secondaries unless you are taken into hospital there are currently no statistics about how many women are currently living with secondaries so they can’t possibly know the true numbers or survival rates.I do appreciate that things need to be improved and we all want to live for as long as possible but figures can be misleading when it’s not based on true facts. Statistics are not reliable anyway as we are all so different but I think it should be know that there are no true statistics. I know that following the first BCC Secondary Breast Cancer Awareness Day last October at which I spoke in Cardiff to highlight the lack of support, the new government have pledged to now record all the women diagnosed with secondaries from now on and they’re already doing it in Cardiff now.
I am going to be speaking again in Cardiff in June for BCC Cymru in front of the Chairman of BCC and trustees and politicians to highlight what women with secondaries need so any input or ideas would be gratefully received.
Take care all,
Anne xx
Hi Anne, you’re right that it’s only recently that stage 4 have been properly recorded (and we have BCC to thank for campaigning on that). However, records were kept in the Midlands of all patients diagnosed with stage 4 BC, and the stats listed on The Cancer Research website relate to that (they say these are representative of the UK as a whole).
Yes stats can and do tell fibs, but the variation is too large to be down to number-crunch errors. Also the medical profession acknowledge that survival and detection rates are far better in the US.