I was diagnosed with stage 4 bc 8 years ago and have had a wonderful quality of life since then…most neighbours, others, would not have a clue I had cancer let alone stage 4 cancer (at time of writing this I have a full thick head of hair.) Most, but sadly not all, of us stage 4 women go on to have many years not weeks to live after our diagnosis. Many of us have children. There’s a heck of a lot of waste in the NHS and a lot of money is spent on lifestyle, cosmetic conditions as well as the useless IT systems etc. I am furious to think we may be writen off in the future just because we have an (expensive) illness that cannot be cured but can be controlled and managed well, with a good quality of life, for a very long time.
NHS Choices now has an article on the report. I hope this paragraph from the introduction is helpful (and reassuring). The report was not only based on NHS treatment, and not only on the UK.
It’s worth reading the whole article, as it says the researchers are not talking about withdrawing treatment from people who benefit from it, but about issues such as better testing of drugs and other treatments to make sure expensive, (and often very hyped) drugs actually provide the benefits they are supposed to, and reducing the cost of drugs to patients and society. Remember that in the US, for example, even a person with good health insurance may use up all it will pay for before their cancer is controlled or reduced to NED, or their treatment may be determined by what deals their insurer has struck with hospitals or drug companies.
A sample paragraph from the NHS Choices article:
“The news story is based on an extensive international report that examined the cost and value of cancer care in developed countries. The report suggests policy changes that could be made to make cancer care more affordable to both patients and society. The report was based on the opinion of many experts, including physicians, patient advocates and economists, and provides examinations of a range of key issues. However, the report does not actually suggest that life-extending drugs should be withheld from terminal cancer patients, rather that there is a greater need to understand whether treatments at this stage will actually extend life, and whether resources would be better directed at improving patients’ quality of life through options such as palliative care. The report also suggests several policy areas that could be targeted to improve quality of care while reducing its cost.”
Just to add: there is a good article in today’s (28th) Independent which is available online.
Sorry, here’s the link. I’ve just been so angry about the mis-reported scare stories in some media.
independent.co.uk/life-style/health-and-families/features/drugs-the-doctors-dilemma-2361871.html
Hi, thanks for the link, really helpful after the Daily Mail’s report.
It is a helpful article. I suppose what the public wants is reassurance that decisions are made on clinical evidence and not cost. It feels quite hard to think that budgets won’t come into the equation. Elinda x
I am certainly worried about the future of the NHS, especially if treatement is rationed while manufacturers (and others?) pocket increasing profits. Apologies if anyone feels that statement is too political.
I would hate to have treatment decisions made solely on the basis of cost, or of advertising, or even of media-led campaigns which may or may not be well informed and honest. Most of us have already found out that there is always a trade-off between effectiveness and side effects, whether from our own experience or from posts from others. There is a lot of pressure to accept the idea that new and heavily hyped to the media must be better, but it may just be that the negative effects are not so well known.
When cancer sufferers, and others of course, are offered new treatments, they really should be given good information. The way some parts of the medical industries have attempted to suppress questions and criticism by people qualified to ask questions and make criticisms is worrying.
I thought it was interesting that in some cases, at any rate, palliative care can extend life as much as further ‘active’ treatment. I should say that I have lost family and friends to cancer, and have had both a DCIS and a IBC on separate occasions, just in case anyone wants to know.
Thanks for the link Mezzomamma
I was diagnosed stage 4 in November 2009, and given just 18 - 24 months to live ( because my cancer was behaving in a very aggressive way). Fortunately, I have an Oncologist who does not believe in rationing treatment for stage 4 patients, and I received very proactive treatment (including Cyberknife stereotatic radiotherapy for skull metastases - which cost the charity who paid for it £22,000). As a result of this, I am not only alive and well two years later, but there is currently no evidence of disease anywhere in my body.
Obviously, if things had not gone well, it is arguable that the treatment would have been a waste of money. However, until such time as the medical profession can reliably predict who will respond to treatment, and who won’t, they must offer treatment to all.
It is all very well for people who think their own cancer is probably not life threatening to suggest this is an acceptable debate, but they should remember that the medical profession do not regard any stage of breast cancer as actually curable. I just wonder if the sme people would think it acceptable to deny those with stage 1 BC treatment?
By the way the Oncologist leading this debate has had quite a few articles written about him that could help explain why he takes this particular view. BCC will not allow me to provide liks to them on the forum, but if anyone wants them they can contact me by pm.