the breast cancer
support charity

Member
Lemongrove
Posts: 1,533
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

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.

Please use plain text.
Member
SueCheshire
Posts: 284
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

Thanks for the link Mezzomamma

Please use plain text.
Member
Mezzomamma
Posts: 1,815
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

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.

Please use plain text.
Member
elinda45
Posts: 2,306
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

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

Please use plain text.
Member
belinda
Posts: 3,491
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

Hi, thanks for the link, really helpful after the Daily Mail's report.

Please use plain text.
Member
Mezzomamma
Posts: 1,815
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

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.

http://www.independent.co.uk/life-style/health-and-families/features/drugs-the-doctors-dilemma-23618...

Please use plain text.
Member
Mezzomamma
Posts: 1,815
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

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."

Please use plain text.
Member
belinda
Posts: 3,491
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

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.

Please use plain text.
Member
elinda45
Posts: 2,306
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

Daisygirl - Yes, it should only be in consultation with the patient and sometimes doctors probably do need to be more straightforward about the potential benefits versus the stress particularly when it's reached the stage of someone being in a hospice.

GIJaneH - I just think it's easy to go for targets like cancer patients or alzheimers patients because of the all public misconceptions about those illnesses such as thinking they only effect the very old.
You're absolutely right though that the postcode lottery is also a terrible and unfair thing.
I think perhaps what Nicky was saying about the profit margins of drug companies is a huge issue but not sure how that could be tackled. I'd like to know, for example, if these drugs cost the same in the rest of Europe. Elinda x

Please use plain text.
Member
DaisyGirl
Posts: 397
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

I do agree with everything that has been said but my experience with my mum before she died does show another side. 10 years after her first diagnosis of breast cancer it returned as a tumour on her spine and by the time it was found it was too late to operate and the Dr’s gave her 3 months to live. Her treatment included chemo and dad nursed her at home for as long as he could but she eventually went into the new local hospice, which was quite near where they lived.

Mum was comfortable there and the family close by, but as her health deteriorated the Docs decided to give her some radiotherapy which meant she had to move to a hospice a difficult 40 min drive away for my dad. She died approx 3 weeks later.

I have always felt that the move and radiotherapy were pointless and just caused increased anxiety & stress for mum & dad for no real reason, and yes, the money could have been better spent.

Please use plain text.
Member
GIJaneH
Posts: 2,048
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

I agree. It's one thing in the abstract to decide not to fund oh, cancer patients, alzheimer sufferers, people in ITU, very tiny babies, whatever... quite another thing when it's you or someone you love and value... and almost EVERYONE is loved and valued by somebody! Abstract decisions apply to specific people... and it's iniquitous. But unless they tackle the waste (and how that could be done nationally, I don't know), there ain't enough to go round, so we are left with post code rationing - which is also wrong!

Please use plain text.
Member
elinda45
Posts: 2,306
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

I do understand your point but I am just very wary of any suggestion that targets a certain group of patients in that way. Listening to the radio, it was clear that some people thought that terminal cancer patients were only 'grannies'. You can imagine the outcry if that applied to their child or their wife. I wonder if the doctors suggesting this would feel the same if they could have an extra few months or so with a treatment.

It's easy to convince the public that these massive savings will be made by targeting terminal cancer patients but the reality is different. Once that's done - who's next on the list? Anyone over a certain age perhaps? Or perhaps they think we should adopt a policy of not treating anyone whose condition is going to deteriorate? It's appalling.

The waste in the NHS is phenomenal, you only have to watch Gerry Robinson. I could rant on for hours about how money could be better spent.

Elinda x

Please use plain text.
Member
GIJaneH
Posts: 2,048
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

You're absolutely right Elinda... millions wasted on the IT budget etc etc.... but (being devil's advocate) rationing is a reality in the NHS - there isn't enough to do everything possible for every person. That's a fact unfortunately. Being OPEN about what we choose not to do is a brave step (and a vital one in my view). Cancer, it seems to me, is moderately well funded compared to some other life-threatening issues (like stroke). How you say to ANY patient, "sorry, your life is not worth (whatever it is)" I don't know....

Please use plain text.
Member
elinda45
Posts: 2,306
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

I've just heard this being discussed on Radio 2 and it made me feel physically sick.

Long before I was diagnosed with stage 3 BC, I have believed in doing everything possible for cancer patients including new drugs etc. Every new drug seems to be a massive fight. No-one should be fighting for treatment when they have stage 4 cancer it's plain wrong. There often seems to be some idea that anyone with stage 4 cancer is likely to be an 80 year old - we know that isn't the case.

I used to be a nurse and I find the idea of not providing treatment to people who are very ill whether its cancer or something else utterly repugnant.

If you start on rationing services where do you stop and afterall why pick on cancer patients? How about weight loss surgery, the money spent on looking after drunks in A&E, provision of liver transplants for alcoholics, patching up people who do dangerous sports, look after people who don't use condoms and get sexually transmitted diseases etc.

Don't get me wrong, I'm not saying we shouldn't care for all the above, but if you're going to start picking about with the who should have what and for how long, it will get very messy.

Millions have been wasted on an IT project that many of us on the front line and many in IT said wouldn't work. Thousands have been wasted on unnecessary projects whose outcomes haven't led to changes.

Oh God don't get me started.......

Elinda x

Please use plain text.
Member
Nicky65
Posts: 735
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

I realise that the Daily Mail have put their usual 'scaremongering slant' onto the report, but it does raise concerns that it is being discussed at all.

One question I did think is 'what is terminal?' I don't consider myself to be terminal and with Breast cancer (as unfortunately has been confirmed too often recently)the 'end'can happen so quickly! and people can have an almost 'normal' quality of life right up to this point. Whereas with other cancers this isn't the case. I do compare also to my Dad who died of Prostate Cancer, He lived without treatment for 9 weeks at a 'terminal diagnosis' we wouldn't have wished any treatments on him, he slowly got weaker and weaker and was pain free.

Perhaps we should be looking at profit margins for the drug companies! Do the drugs really cost that much to produce? I know that research and testing etc need to be factored in, but over long periods of time they have to get cheaper surely.

I remember a while ago reading about withdrawing Avastin because 'it only extended life by on average 5 months' However for a young child about to lose his or her Mother that could be a first day at school, one more Christmas, a special birthday! Such precious memories in 5 months of extended life!

Don't doctors make an oath to extend life wherever possible? surely a cancer patient wouldn't be betrayed in such a disgraceful, immoral way...well we'll have to hope not, the latest news doesn't sound too promising!

Please use plain text.
Member
GIJaneH
Posts: 2,048
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

It is indeed the opposite - check for minor/routine causes and escalate if/when those are eliminated... Regarding the article... The Mail has a good front page headline! I saw it in the supermarket this mornign and stopped in my tracks... HOWEVER.... I work in a hospital... and I do meet (and support) patients who are terminally ill, and are offered "treatment" and grab it only to find that their last days are spent feeling really ill from the chemo as well as the cancer.... My complaint is that not enough information is given to them/us... "This might respond to treatment" - what exactly does that mean? Curative? Palliative? Will this prolong life? How long for? What sort of quality of life? Sometimes, with all the information, the right choice is to let go... and sometimes the right choice is to fighth to the last breath... but there needs to be choice - informed choice, and funded choice!

Please use plain text.
Member
wizardpoo
Posts: 72
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

I think this article should not be taken at face value,like all media hype. Report was referring to all cancers across the board,not just BC. So very hard as it is there must come a point where a balance of benefit / cost must come into the equation.We tend to see only our own personal perspective/situation as do all with whatever illnesses they have.I believe that if there were more professional awareness and a different approach early diagnosis is the key to both patient health and effective use of funds.I can only speak of parts of europe where I have lived. There the approach is much more of - patient presents with odd/vague symptoms which could well indicate serious desease-then they first run tests to eliminate that-then move onto the more minor/mundane things it could be-but they check First for the more serious things.Here it does seem to be the opposite.

Please use plain text.
Member
Sandytoes
Posts: 1,218
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

Juliet - Holly, Phillip, Max Clifford and a psychologist were basically echoing what people are saying and thinking on here - that even if life is only extended for a matter of weeks it is worth the cost and the only instance that treatment should be stopped is if the patient themselves choose to stop. Max Clifford also said that it would be wrong if the only people to get life-extending treatment were those who could pay for it or those with private healthcare.

Please use plain text.
Member
juliet66
Posts: 724
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

Well as with anything in the Daily Mail the angle or slant should be questioned. Goes without saying :smileyhappy:

Please use plain text.
Member
Mezzomamma
Posts: 1,815
Registered: ‎01-05-2012

Re: Should we just lay down and die ?

It's also possible that the newspaper article does not accurately reflect what the report said. The BBC article has a very different take, quoting this from the report:

'It adds: "Few treatments or tests are clear clinical winners, with many falling into the category of substantial cost for limited benefit."'

This article also says the report queries whether some treatments are being tested as thoroughly as they should.

http://www.bbc.co.uk/news/health-15032862

I imagine that NHS Choices will have something on this report soon, as well.

Please use plain text.