Tag Archives: Breakthrough Breast Cancer
This week, three major pieces of research have been published which change the way we think about breast cancer.
All have been funded in part by funds people like you have donated to Breakthrough Breast Cancer, with involvement from two of their key scientists, Professors Jorge Reis-Filho and Andrew Tutt.
British success story
It is good to report on a British success; when Cameron and Lansley constantly bang on about how much better other countries are at treating cancer, they forget to mention that British research institutes such as Cancer Research UK are way up there at the top of the world.
Now Breakthrough’s research team has announced ground-breaking findings about Breast Cancer, and their research revealed:
1. Nine new genes which drive the development of breast cancer – ahttp://www.youtube.com/watch?v=GcrVUJvKA1E&feature=relmfureatment before her cancer progresses.
3. A previously unknown process that happens to the cells in the body and which is a driver in breast cancer development. By understanding this process we hope to be able to create targeted treatments in the future which, for example, might be able to stop the cancer from developing.
The ramifications of this work in terms of how we diagnose, treat and prevent the disease are potentially huge. You can read more about these on Breakthrough’s website
Their work shows how far they have come since Breakthrough was founded 20 years ago. But it also shows how important it is that funds are raised to enable them to carry on their work, until we all reach a point when breast cancer is a disease which is no longer life-threatening.
If you are reading this, and have contributed to Breakthrough, it’s good to know your support has been vital in helping them get this far. It is now needed more than ever, so they can build on the exciting breakthroughs like those reported this week.
Christ Askew of Breakthrough says “Thank you so much for your continued support. I really do believe that this news takes us further towards ending the fear of breast cancer”.
Expectations were high ~
but didn’t deliver
Last year the audience was full of enthusiasm at the APPGC Britain Against Cancer Conference. Delegates participated, learnt, exchanged views and sessions provided plenty of food for thought.
But this year the formula has changed. Instead of lively debates, we were asked to ‘submit questions in advance’ and had to endure the one-hour-get-it-all-in-module.
This is so 1980s, and it’s about time Macmillan (who now run this group), realised that people who come to their conferences don’t need trendy management tricks. These are stuck in a time-warp, but unfortunately still used by some companies to run training courses for charities etc. The formula worked 30 years ago, but we have moved on from there, and people no longer need encouragement to participate – it’s keeping their questions short that is the problem. Una used to run this conference, and she realised that when you gather together MPs, Charity Executives and informed patients, you are going to get a useful dialogue going by just letting them get on with exchanging ideas.
Patient Voice in local, regional and national NHS decisions.
Baroness Masham was an excellent chair for this session, and her speaker was Angela Coulter from Dept. Health at University of Oxford. But they were both up against time restrictions, and when the audience tried to ask questions the Baroness regretfully had to say there wasn’t time.
Ms Coulter produced an up-beat analysis of what the Health Bill might do, showing a positive side to the pages of blurb, which made some sense. She said she thought nothing much would change in the NHS, (was this because she knows the NHS doesn’t like change?), and “Patients are the greatest resource we have”.
Talking over the clauses in the Bill, she said there should not be an exclusive focus on a single disease; what patients want is well-co-ordinated holistic care. Politicians haven’t done much explaining about what’s going to happen with this Bill, and Lansley hasn’t made this clear to NHS staff – yet.
Then, when we would all have like to question Ms Coulter, who seemed brimming with sensible advice, we were split up into the dreaded round tables to come up with ‘ideas’ .
We were given case studies to read (impossible – there was no time), and Breakthrough Breast Cancer, who had been asked to organise the session, admitted they had been told to keep everything short – but then told they had to include speakers, workshop session, case study and wrap-up – all to be completed in 60 minutes. This was a complete waste of Breakthrough’s time and expertise, and did no favours to the knowledgeable audience, all of whom could have been better employed questioning the Baroness and Ms Coulter, and gathering some of their expert opinions.
After all, the Baroness was off that afternoon to put forward an ammendment to the Health Bill in the House of Lords – which we would have all liked to hear more about from someone at the sharp end.
There were murmurs around tables about ‘not enough time’. One can only imagine that the huge Macmillan HQs cupboards are bursting with all the sheets of A1 paper they love to distribute for table ‘hosts’ to fill in. But come up with anything concrete – no. Let’s hope that Macmillan will throw out the old formulas and bring in up-to-date debates, similar to previous conferences.
The afternoon started with a panel discussion from Prof. Sir Mike Richards, Prof. Steve Field and Dr. Frank Atherton, President of the Assn. of Directors of Public Health.
Mike Richards repeated the usual mantra about how we lag behind Europe in cancer survival. Well, it’s about time the Dept. Health, National Cancer Action Team and Uncle Tom Cobley got on with doing something – not just talking.
Eurostar runs a slick service to the Continent; there are plenty of low cost airlines zipping across the 21 miles of Channel, yet no-one seems to be running any exchange programmes – let alone asking patients if they would like to go for treatment to see and compare what is different and what could easily be copied.
Because treatment in Europe is not all about expensive drugs or equipment (although these are available), but much more about the approach to treating patients holistically.
But during the panel’s speaches, instead of being told of ‘goodies’ that were coming on-stream, we were treated to old but shocking statistics, such as a quarter of cancer patients present as Emergencies; plus the fact that GI Endoscopies were at the bottom of the table when it came to investigations. We know this – let’s know what’s going to improve from a patients’ point of view.
The conference was supposed to be about Achieving Quality, and Getting cancer services right in the new NHS. The only practical advice seemed to be Dr. Atherton’s four points:
- Health and Wealth Boards – get them to focus on cancer
- Better information about benchmarking
- Need to look at pathways in much greater degree
- and importance of Networking
The comments from the platform could have spiked a lively discussion. Instead the audience had been asked to submit their questions in advance, and organisers had chosen selected ones. Afterwards a patient went up to Mike Richards to say she felt frustrated. She heard a lot about ‘patient involvement’, but whenever she tried to get involved, she seemed to be sent off in another direction, or not given any details as to how she could get involved.
The exhibition was well thought out, with interesting tables and staff eager to talk and inform. I met Krish Shastri, the insurance guru, and we had a long discussion on how neither medical insurance companies nor oncologists let patients know that their insurance for cancer-related illness may well run out after five years. Leaving patients floating around, either paying for themselves, or having to find ‘new’ doctors as their doctors were seeing them privately.
There was a real buzz in the room, and it showed that when you get a large group of intelligent people interested in cancer, there is a lot to be learnt from listening to them, and debating.
Let’s hope the conference goes back to that formula next year.
Chillingly, reading my report on this conference last year I had mentioned that Andrew Lansley had placed great emphasis on ‘using the voluntary sector’ to a much greater extent. Well, it was evident that Macmillan has got into bed very firmly with the Dept. Health/NHS – but is this what the volunteers who support this great charity really want?
for better care
Wherever we live, the Patients’ Association’s recent report on appalling care in the NHS shows we need to stick together to ensure we are treated correctly, and with compassion and care when we go into hospital.
However, in report after report, those with cancer often receive appalling treatment, particularly if they are elderly.
Now could be the time for cancer charities to work closer together to ensure all cancer patients, whatever their cancer, receive best treatment possible.
A new survey looking into public support for cancer charities has uncovered a worrying disparity in the proportion of donations throughout the sector.
The study, which asked more than 800 people in the UK to rank in order of preference which cancers they were most likely to support, found that just two cancers made up almost two thirds (62 per cent) of the total favoured donations.
Yet cancer is cancer; so many facets of treatment are the same, whatever cancer you have, yet during my treatment I often found that I was categorised as having breast cancer, rather than just cancer – even though treatment would have been the same.
When it came to support centres, I finally decided to support Paul’s Cancer Support Centre in Battersea, rather than more ‘fashionable’ centres in my area – simply because they looked after anyone who came through their door, whatever the cancer.
Learn from each other
However, looking around at campaigns, there is jealousy when rarer cancers see how much publicity breast cancer receives. But this is for historical reasons. About 30 years ago many brave women decided to go out and face what was seen as a stigma, and announce to the world they had breast cancer. When my mother had this, her friends thought they would catch cancerfrom her, but she told everyone – and when I got it no-one batted an eyelid.
12 years ago Breakthrough Breast Cancer started their Westminster Fly-in, to target MPs. This has grown until this year 10% of MPs made themselves available to constituents for them to lobby. This campaign is well thought out, and runs like clockwork, but there is a limit to any MP’s time they can devote to one cause on behalf of constituents.
Just before the last election I was bombarded by emails from Macmillan, asking me to lobby my MP on behalf of cancer.
In any campaign, there comes a time when you leave well alone. If an MP has said they will help, you don’t waste their time by over-emphasis. To the average MP – cancer is cancer. If they have promised to help one type, a double whammy can leave the MP turning ‘off’. To them, cancer is cancer, whatever the type.
Perhaps Macmillan should have found out from Breakthrough which MPs were already signed up, then
- contacted those already signed up, thanking them for their support for cancer (always good PR – an MP likes a pat on the back)
- contacted those MPs who hadn’t signed up – and focussed efforts on getting them to help
Sometimes the EU Parliament in Brussels can work well – particularly when it comes to cancer matters. So when UK airports introduced new security measures, which include body scanners – with a murky research history when it comes to possible dangers from radiation- I thought this was something Syed Kamal, MEP, could take on board.
Thinking which cancer patients might have concerns, then contacted Beating Bowel Cancer and Breast Cancer Care, and found both were happy to work together and get in contact with Syed Kamal. Currently he is working extremely hard to bring cancer patients’ concerns to authorities.
If anyone has another cancer that uses radiotherapy to for treatment, and is worried, contact Syed Kamal MEP, and/or send an email to firstname.lastname@example.org.
“Together we can beat cancer”
what’s to stop cancer charities working together?
In a list made up of the ten most prominent cancers, nearly half of those polled who would donate to a cancer charity (46 per cent) said they were more likely to support breast cancer while one in seven (16 per cent) chose lung cancer.
The survey revealed that only a third (38 per cent) of all respondents said they would be more likely to donate to another cancer charity – leaving it increasing difficult for some smaller charities to raise funds for research and awareness campaigns.
Results also found that cervical cancer featured highly on the list, with almost half of respondents (43 per cent), favouring it in their top three. The figures suggest that female cancers are more widely supported than male-associated cancers.
Of the other cancers, the findings showed that only one in 33 (3 per cent) would be more likely to donate to skin cancer, one in 25 (4 per cent) to testicular and brain cancers while one in 20 (5 per cent) preferred to support prostate and bowel cancers.
Cancer of the liver received votes from only three people in the survey, making it the least chosen of the cancers on the list while mouth cancer obtained just eight votes.
The UK’s leading oral health charity, the British Dental Health Foundation, who organise and run Mouth Cancer Action Month throughout November, with support from Denplan, said the research was concerning and are encouraging more people to support their cause.
Chief Executive of the Foundation, Dr Nigel Carter, said: “Unfortunately, the recession and a squeeze on household incomes have meant that some charities have financially suffered as a result. Now, more than ever, instead of donating to a number of charities, some people might choose to prioritise just one, and as the results of this study have shown, mouth cancer is rarely thought upon.
“Regular donations are a vital part of our fundraising efforts. Mouth cancer is now diagnosed in 6,000 people in the UK every year, and without early detection half will die. It is important that we continue to raise awareness to the early warning signs of the disease, as well as the risk factors – to be able to do this, we are asking for your continued support and increasing donations.”
The survey also showed one in four people were less likely to support cancers which are seen as preventable.
Dr Carter added: “This is especially worrying, as three quarters of mouth cancer cases arise from smoking and excess drinking. Bad diet and the Human Papilloma Virus (HPV), which is a sexually transmitted disease, also contribute to developing the disease. Although in most cases, we can largely prevent the chances of developing mouth cancer by avoiding the risk factors, those that are diagnosed still need our support and should not be overlooked.”
At last –
Screening is to be reviewed
- I have decided for the time being to have an annual mammogram
- I am then seen by my very eminent breast surgeon, and he carefully examines the screen to see my ‘photos’. This gives me confidence that my mammogram results are being checked by an expert.
According to a recent BBC story,the evidence for breast cancer screening in the UK is being reviewed, amid controversy about the measure’s effectiveness.
The NHS says screening saves lives, but other researchers have argued that it may cause more harm than good.
The national cancer director for England, Prof Mike Richards, announced in the British Medical Journal that he will lead a review.
He said he was taking the “current controversy very seriously”.
When it comes to cancer treatment, earlier is better. Screening programmes for a range of cancers help doctors make a diagnosis sooner. But they also run the risk of false positives, diagnosing someone with cancer when they are healthy.
Screening was introduced for breast cancer in 1988 in the UK, and now offers tests to women, over the age of 50, every three years.
In 2002, the World Health Organisation’s International Agency for Research on Cancer estimated that screening reduced deaths from breast cancer by about 35%.
The NHS says 1,400 lives are saved through screening in England alone.
And currently it is extremely difficult, if not impossible, to get that explanation.
A review of clinical trials involving a total of 600,000 women concluded it was “not clear whether screening does more good than harm”.
It said that for every 2,000 women screened in a 10-year period:
- one life would be saved
- 10 healthy women would have unnecessary treatment
- at least 200 women would face psychological distress for many months because of false positive results.
The authors of that research labelled the NHS Breast Screening Programme’s advice “seriously misleading”.
Should I? Or shouldn’t I?
Susan Bewley, Professor of complex obstetrics at King’s College London, has turned down screening.
In a letter to Prof Richards last month, she said: “The distress of overdiagnosis and decision making when finding lesions that might, or might not, be cancer that might, or might not, require mutilating surgery is increasingly being exposed.”
In response, Prof Richards said research suggested that up to two and a half lives were saved for every over-diagnosed case.
He added that he would lead a review of the evidence to settle the ongoing controversy.
“Should the independent review conclude that the balance of harms outweighs the benefits of breast screening, I will have no hesitation in referring the findings to the UK National Screening Committee and then ministers.
The review will be led jointly by Prof Richards and Cancer Research UK.
The director of health information at the charity, Sara Hiom, said: “Women need more accurate, evidence-based and clear information to be able to make an informed choice about breast screening.
“The decision whether to be screened is a personal one, but that decision should be made with all of the potential harms and benefits fully explained.”
Breakthrough Breast Cancer’s chief executive Chris Askew said: “Breast screening is vital as it can detect breast cancer at the earliest possible stages when no other symptoms are obvious.
“The earlier breast cancer is picked up the better for the one in eight women who are diagnosed every year with this disease, as treatment options are more likely to be less aggressive and have successful outcomes.
The value of breast cancer screening has been a source of controversy
Do you recognise yourself in the picture above? Or a friend?
As usual, the Westminster Fly-in was bigger than ever, for its 12th annual event. Over 60 MPs were lobbied by the group above.
The night before the Lobby meetings, there was a Reception where all of a sudden you were talking to an MP, who “came over because I just wanted to see what it was about”, or a Lord who told me, “I came in to see what I could do to help”.
Those on the platform constantly congratulated and thanked Breakthrough’s CAN members, and the whole event showed how much their efforts were appreciated.
The TLC campaign
One of the main messages at the event was TLC. For once this wasn’t what we wanted from our medical team, but the campaign message
- TOUCH your breasts. Can you feel anything unusual?
- LOOK for changes. Is there any chance in shape or texture?
- CHECK anything ususual with your doctor.
However, it is as well to remember that many of us suffer with doctors who ‘pooh pooh’ concerns we have over cancer, so there should be information about what patients can do IF their doctor won’t listen.
Georgina Kaim, Senior Development officer, was my main contact in the year leading up to the Fly-In, and kept on supplying me with information and support. As it happened, ‘my’ MP chickened out – he works with the Cabinet and anyone in that position is worried about fall-out from Health Bill. But no worries – we intend to follow up!
At the door to greet us when we arrived was Maggie Alexander and her team. They knew us all by name, and were determined to see that we were welcomed and felt welcome.
Then Maggie, as Director of Policy and Campaigns, set the tone for the event during the first session. From then on we were on an interesting roller-coaster. Workshops followed, designed to take ‘new’ CAN members through what would happen during their MP meeting – and the team made sure everyone was extremely well briefed.
It was buzzing with Trustees who had bothered to turn up and TALK, and various MPs and members of the House of Lords who had come over to see what it was all about (interestingly it was mainly men).
One MP who turned up was James Arbuthnot, M.P. for North East Hampshire, and we talked about dogs (James has several and wants to breed Irish Wolfhounds). As you see he was bravely photographed at another event wearng a pink waitcoat for Wear Pink Day; I only hope the troops don’t pull his leg, as his other job is in Defence.
The party was was hosted by Annette Brook and Stephen Brine, Co-Chairs of the All-Party Parliamentary Group for Breast Cancer, who both gave light-hearted but inspiring speeches.
Next morning the efficient team from Breakthrough marshalled ‘their’ charges off to meet the MPs. In an orderly fashion, they gathered CAN members together, made sure they had a briefing pack and all the literature they would need, and even supplied a memory stick with Breakthrough’s loge. They hoped these would lie around on member’s desks and spread the word! Very good PR!
By lunchtime everyone was well away, talking and exchanging information. I sat between two CAN members who also worked for Kidney cancer, and we spent lunch discussing how, now that most people talk openly about breast cancer, we need to join up with all the other cancers and present a united front to the Minister of Health, and all the politicians.
Currently, there is a feeling that the Dept. Health is happy that cancer charities pursue their own agenda. If charities don’t talk between each other, it is easier to ignore or brush aside concerns. As I found out last month, my local hospital is totally ignoring that we are allowed to top-up drugs with co-payments. I was refused, and bullied, being told that the hospital knew nothing.
But a united front, and a thundering ’round-robin’ letter to the hospital, signed by the major charities’ CEOs, and the hospital would have had to listen.
During the conference
Maggie Alexander was repeating that we have to ensure that Breast Care Nurses aren’t allowed to be made redundant. Perhaps this could be the subject of a letter from united cancer charities, because it isn’t only breast care nurses that are threatened with redundancy, but other specialised cancer nurses as well.
One disappointment was that the session on personalised medicine wasn’t to do with the new treatment paths in the United States. In fact to someone who follows what is going on in America, it was bewildering that Breakthrough isn’t campaigning more strongly for this. After the last San Antonio Conference, doctors across the States declared emphatically that their surgeries were definitely going to be offering this to every suitable patient. Yes, it will make them money – but if tests might avoid side effects such as heart and eye problems, nausea, hot flushes, carpal tunnel syndrome, etc. surely, if the NHS copy this, it will save money?
The All-party Parliamentary Group on Breast Cancer was represented by Annette Brooke and Steve Brine. Brine announced that the Fly-in is like their AGM, and both said how brilliant this event is for getting to meet people and hear their concerns. However, he repeated the same mantra that was being aired at every session, and constantly repeated by Andrew Lansley and David Cameron: according to the World Health Organisation Britain lags behind the rest of the world when it comes to cancer treatment and survivorship.
As a patient I am getting tired of hearing this. We know that we lag behind. So why aren’t we told what is going on in other countries, so we can copy their treatments and hopefully live longer? Having been to France, Germany, Italy, Austria and Switzerland for treatment for different side effects from drugs, for me it wasn’t about expensive drugs or equipment, but the way European doctors take time to go through problems, and use common (er-rare?) sense. Every bit of superb treatment I received depended on this rare sense; not once did I need an expensive drug. But every treatment could be copied so easily, if only there weren’t arrogance from our medics.
Over the teas and coffees, we talked about NHS services already being withdrawn, and how it was going to be up to patients themselves to question hospitals, GPs and the new Commissioning Boards. If they don’t provide the services – how and whom do we ask WHY?
One delegates mentioned that consultants are now starting to ask the NHS to allow them 15 or even 20 minutes for each appointment. Hurrah – let’s all lobby for that! In Europe a ten-minute appointment draws gasps of horror – and the thought of our ‘clinic’ system where patients are seen by a different doctor each time is anathema.
Many patients don’t realise they are entitled to a second opinion, and in fact this is normal in many countries. But when it comes to joined-up thinking, one delegate cited that her hospital had just opened a MacDonalds – now how many calories does a Big Mac contain? !! Yet we are told obesity can be a factor in getting cancer.
And overall delegates were in agreement that Patients must be at the centre, consulted and listened to. But when the Royal College of Nursing and other medical associations are sponsoring conferences, ostensibly dealing with patient care, but NO PATIENTS ARE ASKED TO SPEAK – one wonders if they will ever get it.
One criticism of the Central Hall venue. Breakthrough offered us lunch, but the caterers hadn’t thought who was going to eat this. There were lovely-looking eats, but no labels to show what they contained. My first mouthful of what looked like a fish cake was full of chillie flakes – so after that I had to go round asking staff what was in food. A simple sign listing things like mayonnaise, chillies, spices, etc. which drugs don’t like would be helpful.
Still, at least after the Westminster Fly-In, MPs have got it!
Politicians put patients with cancer first – because ….
We get off our Bxxxxxs and ASK
I used to feel guilty about this – here was I – a cancer patient – and if I went to the doctor and said “I think I have cancer”, officially I was to be fast-tracked through and get tests within two weeks.
Those with other problems, from hips to heart, joined the lengthy NHS queue, even though their need was just as great.
When I needed expensive drugs – one little murmur from my GP re prescribing these, cost etc., and it was on to the PCT who caved in immediately to give me the drugs.
The Telegraph’s resident doctor, Max Pemberton‘s latest article addresses this problem. What he writes is interesting to read; on appalling treatment for OAPs, how we treat dementia patients, etc. he is always spot on.
His latest article on treating cancer patients asks “what about other illnesses?”
He is right
But before we feel guilty that we are getting what we ask for, just remember;
it was our parents and us who fought for better cancer treatment. When my mother had breast cancer 40 years ago all her friends spoke about her condition in whispers. Mother defied them, told anyone who was interested that she had cancer, and her generation bought this problem out of the closet. Today, we are used to talking about cancer, and I meet up with other survivors who have no hesitation in saying what type of cancer they have.
But I also had polio as a child, and picked up problems such as osteoporosis from side effects of drugs along the way. Now I find the attitude towards tackling problems caused by these conditions, especially in the NHS, is totally different, and I have to fight for what I need on my own.
The Westminster Fly-in is a highlight of the year for many of us on the campaign trail, and 0rganised (extremely efficiently) by Breakthrough Breast Cancer. At the event we get to meet up with fellow breast cancer patients, which always produces some thoughtful approach to problems that might just work for me ……
On the day, Breakthrough Breast Cancer gets a large group of MPs through the door to be lobbied, talked to and sent away clued up with knowledge to fight on our behalf.
Now contrast this with Polio. The NHS gingerly comes up with the figure that there are ‘probably’ 120,000 of us in Britain: not enough to get their iron knickers in a twist over our treatment.
But if we lived in the States doctors WOULD know about it. Campaigners have found that there are 3 million polio survivors in the States; we had the same incidence of polio in our population, so taking their figures as an example, we probably have at least 600,000 polio survivors in Britain. Many of us have a condition that presents itself when we are over 50 called Post Polio Syndrome, repeating the problems we had as children, with added twists – but only a few stalwarts are there to lobby on our behalf.
If people such as Lord Snowden, and other survivors, got up and made a fuss – we would soon have more recognition. But trawling through a Wikipedia list of polio survivors, very very few, apart from Mia Farrow, ever campaign on behalf of survivors. Yet, Google: ‘Breast Cancer celebs’ – and the picture is very different; every survivor now wants to be associated with campaigning about this disease.
The same with Osteoporosis – there are thousands of us in Britain; cancer patients who were put on aromatase inhibitors, told we might get the disease, and when we did were just told to go home and exercise. In Europe patients don’t stand for that – they have demanded proper exercise programmes, and since I have been following a similar programme I have reversed my Osteoporosis by 21%.
This little victory is of no interest whatsoever to my local hospital, who don’t want to help me as I would be using NHS resources (which at the moment are lying idle in the hospital gym). The equipment was provided (as little plaques tell us on every piece of eqipment) by the Friends of the hospital (Mother was one of their fund-raisers). When I contact the Chairman of the Friends, to say why isn’t this equipment available for people who might want to use it, she weakly talks about “hospital policy”.
Luckily my MP, Greg Hands, is a really good constituency MP, and tirelessly contacts officials on my behalf.
But, the shining example of good NHS care comes if you have a heart problem. Bad news is ASCO conference in U.S. last year came out with around one in four of us will have heart problems if we take aromatase inhibitors; good news is, if you have to go into the Brompton Hospital for treatment, you are amazed at how well the NHS can perform – when it wants to. Cancer hospitals could learn so much from this hospital, particularly with their fantastic drugs telephone helpline.
And we only have to look at how Help for Heroes has bought amputees out of the homes in which they would once have retired. Their lobbying is incredibly effective, and nearly £100 million pounds worth of funds raised are producing an awful lot of practical help. It is always energising to join in with any H4H event; they are focussed; everyone is given something to do, and everyone gets on with it. When I have been involved in a H4H, event planning is done by email, and we don’t take no for an answer – just think of ways around the problem that will please everyone.
Other charities could learn a lot from lobbying and events in aid of cancer, H4H and Heart. We, as cancer patients don’t need to feel embarrassed; we got on with lobbying, planning, writing and begging – just don’t feel upset because others sit down and don’t get on with fighting for better NHS care.
As Max Pemberton says, “I don’t want to deny someone who has cancer even the slimmest glimmer of hope. But conversely, just because the diagnosis of cancer is so emotive, I don’t want to see treatments that have proven benefit being denied to people with other conditions. I can’t help but think that if people knew the reality of the Cancer Drugs Fund, it wouldn’t be such a vote winner”.
He’s right there – but if no-one else fights like we do – we can’t blame ourselves if we get more than our fair share.
Contact Breakthrough Breast Cancer about being involved in the Westminster Fly-In. It doesn’t matter where you live, they raise money so that anyone in UK can come and lobby their MP. Once you sign up, they send you frequent updates to give you help in how to lobby your MP, what to write, and how else you can help.
Next Event: Monday 17th and Tues. 18th October, 2011
Not only is the event great fun, because you meet others who get on with things! – but you learn an enormous amount about how to put carry out effective lobbying.
Contact Georginak@breakthrough.org.uk or 020 7025 2584
See you there!
1. WHAT IS ‘THE LAST GREAT RACE ON EARTH’?
Known as The Iditarod, only a mad man (or woman) would want to take part in this race which is run across the Alaskan wilderness in the depths of winter.
The temperature can go as low as minus 40 to- 60 degrees -You have 16 dogs to look after (rules say they get fed before you) – Race for up to 24 hours at a stretch – Sleep in snatches and no time for a shower – Risking frostbite or worse in the process.
All to take part in what’s called The Last Great Race on Earth.
Cancer Survivors do it best!
And if that isn’t enough – imagine running the 1000+ miles when you have had mouth cancer, need to keep your throat moist (but water freezes at minus temperatures) and you still win the race for a record 4 times in a row! As last year’s winner, Lance Mackey, proved.
Or, if you are a woman, you survive breast cancer – go on to run the Iditarod for the 30th time – and still finish in front of many of the competitors (men included). That’s DeeDee Jonrowe for you.
It’s not the dogs – although they take centre stage – nor the mushers – although they are something else – but the whole Iditarod experience that captures the world’s imagination for two weeks every March.
And to keep cancer survivors up-to-speed with what’s happening, every day from March 5th onwards this website will have daily reports of what’s happening.
If you enjoy reading the reports, please give a small donation to Breakthrough Breast Cancer. http://breakthrough.org.uk/donate/index.htmlnd I am doing these reports to help them get donations for research.
What is The Iditarod?
First Saturday in March every year, around 70 Mushers and their dog teams set off from Willow (near Anchorage, Alaska) and race to Nome. They are taking part in a race that loosely commemorates a life-saving effort by sled dogs in 1925, to deliver diphtheria serum to Nome, Alaska.
The race is run across icy, snowy mountains, forest trails, across rivers and up rocky passes. The mushers and dogs can race for up to 24 hours non-stop, and camp out on the trail. Rules just say dogs must be warm and comfortable when bedded down to rest. Often mushers race at night; the lower the temperature the more the dogs like it and faster they run.
The race takes upwards of 8 days, but doesn’t finish until the last competitor still in the competition is home and dry – which can take 20 days or more. Incidentally whoever comes last is always awarded the traditional Red Lantern.
And what do they race for?
- First prize is upwards of $50,000 – plus percentage of entrance money
- Top finishers get prize money in a diminishing table – last year Lance Mackey won $69,000 – down to No. 30 who picked up $1,800. After that, anyone who finishes picks up $1,049. Why the $49? Because Alaska was the 49th State to join the U.S.A.
- But THE prize the Mushers covet is a Dodge Truck, awarded to the first past the post.
- Along the way mushers can win everything from a bag of gold nuggets to a seven-course meal cooked where they rest.
- Every finisher gets a coveted belt with its iconic Iditarod belt buckle
They are all similar, showing Alaskan sled scenes,
and if you see someone wearing one of these – they
are one tough person!
Men and Women are equal on the Trail
This is the only major international sporting event where men and women compete on equal terms, and the race has been won several times by women.
The first female winner was Libby Riddles, who won in 1985. Whilst rival Mushers were holed up waiting for blizzards to blow over, Libby crept back onto the track and literally felt her way from trail marker to trail marker. She eventually won the event in a time of 18 days.
Two years later the legendary Susan Butcher won, and triumphed again in 1988 and 89, came second in 1990 and won for the fourth time in 91. Sadly, she died of cancer in 2006, but the State of Alaska honours this incredible woman every March with a Susan Butcher day.
The youngest ever runner to compete was 18 year old Dallas Seavey, who comes from a famous Mushing family. He and other family members are competing again this year. Many of the racers come from families long associated with the Iditarod – you will often find father and son competing in same race, and it gets confusing when you look up winners, as so many carry same surname.
For many years the main dogs used were Siberian Huskies (the Ferraris of the dog racing world). Others of the same husky family such as Greenlands and Malamutes (which are larger and heavier – Range Rovers), gave weight to a team, and were used as ‘wheelers’ (dogs nearest the sled that provide the ‘engine’).
But now, money rules. Mushers want the fastest dogs, so the handsome hairy husky breeds are mixed with racy dogs such as pointers, and a not very attractive dog has come out of this. These dogs don’t have the thick hair that protects a husky, so often have to wear coats.
In the past animal rights activists have tried to say the dogs are exploited. Well, having gone out with many teams, the unhappiest sled dog is the one left behind whilst team mates are harnessed up to a sled; these dogs live to run – and run – and run.s ar
Dogs, like humans can have an off day. But during the Iditarod, to ensure that no dog is running whilst injured or off-colour, dogs are inspected frequently on the trail by a team of vets. Usually mushers themselves will bring a dog into the vet’s post because it has hurt itself, but sometimes the inspection will show there is an injury – either way, the dog is taken out, looked after, spoilt, and flown to the end of the trail where it rests up in an animal hospital until the musher finishes and comes to collect it.
If a dog leaves a team, the team will run with an empty space where this dog was harnessed. Mushers won’t move dogs ‘up the line’ so they run side by side, as they are very particular animals. Anyone who owns a team of sled dogs knows their favourite activity is running. Second to this comes fighting each other, as the dogs love a good punch up. So when choosing a team, a musher spends a long time selecting which dogs are most likely to get on with each other, before hitching them up to run alongside. And if one falls out, its mate runs on its own to avoid accidents.
Last year it was extra cold, and Veterinarian Phil Meyer said “As cold as it is now, one of the problems is keeping weight on (the dogs), and I foresee that being a problem in this race,” Meyer is a long time Iditarod vet, talking as he handed out frozen fish (husky treat) to a pair of dogs musher Pete Kaiser left in the McGrath check-in.
Usually Iditarod racers run their teams in a tandem hitch (dogs running hitched up side by side, in an elongated ‘H’ shape), because the trail can be narrow at times.
But in their natural habitat when running across wide open snowy iced-over sea, mushers will use a fan hitch, where dogs are attached by their lines individually to the base, making a fan shape as they pull. Reason – if a dog falls in an ice crevasse the rest of the team can dig in and the musher – hopefully – rescue the dog dangling from the end of their individual line.
The dogs aren’t immune from fashion either. They have to wear Teflon or similar bootees to protect their pads from the sharp ice crystals that form on the churned-up trail. Musher Dee Dee Jonrowe’s team has 2,000 bright pink bootees in their kit. The colour is to remind fans that Dee Dee raises money for a cancer charity, as she is a double mastectomy survivor.
Dogs’ harness is often in neon-bright colours that show off sponsor’s choice, but in reality this makes it easier to pick this up when excited, wriggling dogs cause handlers to drop harness in the snow.
A husky breed will bed down at night, tail curled over nose, and sleep happily in temperatures well below freezing. But now, many of the ‘new’ breed of dog crosses will huddle under thick fleece blankets; they don’t have the thick hair that protects huskies in temperatures -40º below or more on the trail. If you go on the Iditarod website you will see photos of dogs sleeping under fleeces decorated with cats, as their owner said this was the cheapest material available.
Photo shows DeeDee Jonrowe selecting harness for her dogs – made in her trademark pink colour which has two purposes: to make it easy to see in the snow, and – more important – tell the world she survived breast cancer.
But traditionally the race runs when the dogs are happiest, which can be in the middle of the night to take advantage of colder temperatures. Hence if you go to the race site you will see dogs arriving and departing any time of day or night.
Last year’s winner
On 16th March 2010, Lance Mackey quietly emerged off the sea ice of the Bering Straits and entered Iditarod history, crossing the finish line in Nome to become the only musher in the 38-year history of the Iditarod to win four consecutive races.
For winning, Mackey got a new Dodge truck and $69.000. And it’s the truck he said he really wanted! Mackey is a mouth cancer survivor, and a legend on the sled dog trail having won just about every major championship: some of them several times.
He is back this year, and says he is keen to make it five wins in a row. He has a habit of letting the opposition make the running at the beginning of the race, but watch his position. If he runs true to form, you will see him gradually edge up – until he wins by a crushing amount of time.
Men and Women can get breast cancer, and the ‘average’ woman is now considered to have a one in eight chance of developing it during their lifetime, wherever they live in the world.
This British based charity quietly gets on with funding research, with results that benefit patients all over the world. It also lobbies the UK Parliament very effectively, and keeps members of Parliament fully aware of current issues and research.
Dr. Rachel Greig, Senior Policy Officer, says “some risk factors, such as getting older, cannot be changed but the good news is that others can. By drinking less, maintaining a healthy weight and getting physically active, women can reduce their risk of developing breast cancer.”
So DeeDee, Lance and all the others running in the Iditarod are setting a good example! You don’t all have to run 1,000 miles, but half an hour of exercise a day can be of enormous benefit, and if you want to help Breakthrough with a donation – go to http://breakthrough.org.uk/donate/index.htmlnd
From now on I hope to post an update every 36 hours – next one will have info on more British connections, which go back to 1909.
There was good news this week; research published in the British Medical Journal (BMJ) showed that deaths due to breast cancer have fallen by a third in Britain since the 1980s, to 28.2 per 100,000 women, marking the biggest improvement in Europe.
And those at Cancer Research UK, Breast Cancer Care, Breakthrough Breast Cancer, etc. deserve a pat on the back for the tireless work they have done to push these improvements through, and the doctors and nurses who have worked with and listened to them.
Improvements were put down to earlier detection and improved treatment methods. The UK’s breast cancer screening programme was said to be partly responsible for the gain. However, after my article posted last week when Andrew Dilnot, Principal of St. Hugh’s College Oxford, said at the London Computational Knowledge Conference that we shouldn’t trust statistics – I started to think (takes a lot of effort for me!).
Looking ‘behind’ the statistics, as Dilnot recommended, I find the steepness of the fall in death rates is possible, because the UK started off with such a poor record in comparison to Europe. In 1987-9 (starting point for the study), the UK had the highest death rates from breast cancer in Europe. Even now, only Ireland, the Netherland and Denmark rank worse in the table published in the BMJ.
Mike Richards and other Dept. Health officials don’t like it when we point out that other countries had better rates to start with, and why haven’t we yet managed to equal these? They seem to think that Europe will stand still, and in their blinkered way they imagine we are only country that is advancing. And it isn’t just money that makes a difference – Lord Darzi frequently said France spent the same amount overall per person on healthcare (care is funded differently, but he worked out French and Britons paid out same overall).
But as the Patients’ Association says, with cancer care in the news because of cuts in funding, it is also clear that the pressure must be kept on to maintain this improvement.
These figures show that things are improving. People who would have died ten years ago are now alive, which is wonderful news.
But if we want to improve, we must all push, agitate and question why aren’t we equal to Europe?
Response from Michael Baum
” I’ve just carefully read the paper in the BMJ on trends in breast cancer mortality in European countries, since 1980. ( Disparities in breast cancer mortality trends between 30 European countries: retrospective trend analysis of WHO mortality data base, Autier P, Boniol M, La Vecchia C et al, BMJ 2010, 341, 335).
There is also an accompanying editorial by Beral and Peto, explaining why mortality trends are more robust than survival estimates that are polluted by the over-diagnosis at screening on the one hand and the under-registration of new cases that are only picked up at the time of metastatic spread on the other hand.So slagging off the UK for having the worst survival in Europe might just reflect the over-diagnosis in screening intense countries like Sweden.
Interestingly enough, whilst England and Wales has the steepest fall in breast cancer mortality since a peak at 1988, Sweden has demonstrated very little fall in mortality. Furthermore the steepest fall in mortality was in the age group <50 in countries with none or low intensity screening in this age group.
These data reinforce my view that the fall in mortality in the UK is in spite of rather than because of screening. Yet the BBC lead on this feature interviewing a woman who claims her life was saved 4 years ago because her cancer was caught early at screening!!!”
Prof. Baum has a huge bio – just Google if you haven’t met him. He was Principal Investigator in the ATAC trials, and is probably proudest of being awarded the bi-annual St. Gallen Lifetime Achievement Award for Advancements in Breast Cancer Research- which comes with a fantastic watch which he wears. He is also author of ‘Breast Beating’ – more info under Books category.
What we can do to improve survival
One effective way of getting cancer patients’ message over is to sign up for Breakthrough’s Westminster Fly In. I work on committees for several cancer charities, and this was the most effective campaignwith which I was involved last year. Mark Simmonds produced powerful speeches at the event, highighting again and again how our cancer treatment lags behind Europe’s – and this year David Cameron and Andrew Lansley have repeated the message. So congratulations to all those who got the message through to politicians – at last.
The next Fly-In takes place October 18th/19th. If you want to get your teeth into a really effective campaign, contact them on www.breakthrough.org.uk, and if they accept you as a delegate (they pay all accommodation and expenses). But be prepared to work very hard.
And make use of Volunteers
At a Europa Donna conference in Milan, I realised that other European countries are far more sensible than we are. Same goes for the USA, where cancer patients have been incredibly effective in getting the message about breast cancer over to the American public. They don’t employ consultants to undertake training for advocacy – they use cancer patients who train fellow patients, nurses, doctors, etc. Having just finished a year of ‘volunteering’ and training courses, I have discovered that even though the NHS is getting rid of consultants, they have found a comfortable niche with some charities, and have the cheek to attempt to train us.
Surely British charities should look around at their volunteers, and pay them, instead of employing consultants? Volunteers are the people who know what is needed, and many are very effective campaigners: they are involved – they know what cancer is, and what is wanted. Most of us have learnt to be articulate whilst fighting for treatment, and are much more effective than a consultant whose basic knowledge is based on theory, not practice.
I give warning that the next day course I attend run by a charity who has employed an outside Consultancy team, hired at vast expense, who use ‘training by rote’ and copy trendy ideas for ‘getting your audience involved’ is going to be in the epicentre of an erruption – caused by me. I am not putting up with another a training day that started by asking a roomful of dedicated, knowledgeable campaigners who meet frequently on committees, to “stand up and tell us what you would put in your suitcase”. This nonsense is liable to have a controlled explosion on its hands. Me!
This is one of a raft of tricks used by consultant trainers to get everyone talking!! Any cancer patient would know we don’t need excuses to talk! If we have given up a day to help, we want to get on – not waste time.
But I shall be at the Westminster Fly-In – because the time we spend on this campaign is effective, and a good stepping stone to getting better care and improvement in cancer services. Fellow campaigners have got their MPs involved and working for the cause – because MPs don’t need trendy-speak – they want solid facts.
Two years ago I was involved with another charity at the start of the National Cancer Survivorship Initiative (NCSI). 24 months later, it is still in the jaw-jaw doldrums. As it is funded by the NHS there isn’t any urgency, except amongst survivors who are fed up with poor care, and if they can afford it go off to European medical spas. The NCSI doesn’t have to report until 2012! but I can’t wait that long to find out what I should be doing to survive after-effects of cancer drugs.
For report on last year’s Westminster Fly-in, and to get involved, see : http://after-cancer.com/cancer-news-latest/how-to-lobby-an-mp/
Survivorship – will help improve out statistics
It is no good a doctor telling us at a Macmillan conference, “ten years after diagnosis 60% of patients are still suffering from side effects of cancer drugs”, if we don’t get help now.
Helping us stay on hormonal drugs (as they do in Europe) will raise survival rates, and improve our quality of life – rather than knowing we come off the hormonal drugs course because of side effects, but doing nothing to help us stay on.
I want to leave off being a statistic, and get my after-side-effects under control. If anyone feels they can’t wait either, do post a comment below.
For more information on recent Cancer Stats see article from BMJ: http://www.bbc.co.uk/news/health-10944826
However, remember what Dilnot says and take the statistical table shown in this article with a pinch of salt. I have been in Romanian hospitals, and have great admiration for their doctors and their training. However, the country is poor, and I would question that their survival rate would be what is reported – UNLESS – as they can’t afford expensive drugs, would we be better off ditching drugs for our treatment? Makes you wonder.