The slippery slide into Christmas

I was going to regale you with our bad weather journey saga but having listened to my colleagues it barely rates. Six and seven hour journeys home seem to be the norm. The biggest complaint isn’t the weather, the lack of gritters or snow ploughs – but poor information.

My tips for the next time are:

1. If you are in or around London – listen to LBC 97.3. While Transport for London is telling everyone stories about bus services running, listeners were calling in with information about where they weren’t running. My personal story is on Monday evening between the Hampstead Pond and Kenwood there were eight buses dark and abandoned on the side of the road in both directions. Cars were having difficulty passing so buses certainly couldn’t.
   
2. Black ice doesn’t mean ice that is black – it means you can’t see it. I decided that the roads were clear enough this morning and drove in – the stretch after Kenwood looked perfectly clear until I saw a few cars stationary ahead so braked and even at just over 10 mph went into a skid. Fortunately nothing around me so all was well. The stationary cars were crashed into each other and the side of the road – cautionary tale.
   
3. Pedestrians – the pavements are rubbish so we walk in the road. If you are doing this and see a car coming – get out of the way – they might brake and then slide not so gently into you – couple of lucky misses spotted. If you are at a pedestrian crossing, wait until the cars have stopped – see (2) above. (P.S. – walk pigeon-toed it stops you sliding forward).
   
4. Cyclists – are you mad?
   
5. Motorists – a new suggestion to add to the shovel and bag of salt. A couple of old towels – if all else fails you can put them under the front wheels for traction. Thanks Colin’s Dad. (P.S. accelerating hard means that your wheels spin faster – you still don’t move!)
   
6. Brickbats only for the various transport services that have not only let people down, some of which was beyond anyone’s reasonable control, but then gave poor information. Telling people to stay home actually isn’t sufficient information.
   
7. Bouquets for the men who left their car at the bottom of Brim Hill and walked up the hill to push the cars spinning their wheels at the top onto the flat and then walked back down and told everyone to wait until the hill was clear so that they could go up in one go without stopping.
   

Number One Daughter is en route from Switzerland by car – with snow tyres and shovel – oh yes and husband and children. They are staying tonight in France and coming through Eurotunnel tomorrow. Tense times – hopefully all will go well. I have enough food for a siege; have been through the stressed, bad-tempered, bah humbug phase and now let the cooking begin.

If you celebrated Chanukah – hope it was a good one and if you are celebrating Christmas I hope that it is a peaceful one. My wish for everyone is that 2010 is happy, healthy and – please – prosperous!

Take home thoughts from San Antonio

It takes a while to digest all the information from such a huge conference but one theme which was common to many of the presentations was the move towards customising the treatment to the patient’s particular tumour. (We tend to think of breast cancer as one disease – it isn’t – it is a group of diseases which appear in one part of the body).

Of course this is good news for patients but we will need extensive and accurate diagnostic tests with definitive biomarkers¹ so that the most effective treatment can be planned for each patient. In addition we will reduce the number of treatments patients have to undergo because we will know which will work and which won’t.

Treatments will be devised for smaller sub-groups of patients – the challenge is how we find sufficient patients to do research. The average breast unit might only see a few of each in a year? Initiatives such as the Breast International Group (BIG) based in Brussels are working to bring together sufficient numbers of patients into clinical trials worldwide and they have been successful in recruiting over 70,000 patients including many thousands in the UK.

However, even before research gets to that stage there is a considerable amount of work that needs to be done in the laboratory and there the challenge is to accumulate sufficient breast cancer tissue from these subgroups to enable this. Access to good quality tissue was identified by Breast Cancer Campaign’s gap analysis which was published last year and will be addressed by Breast Cancer Campaign’s Tissue Bank which will be launched next year.

It is always exciting to see one of our scientists presenting in front of the 8,000 strong crowd at San Antonio (and seeing our jigsaw logo in its full glory on nine giant screens). This year was no exception when Dr Charlotte Coles presented her interim results on an important radiotherapy trial which we supported in Cambridge. Although early work, these results are very promising and we look forward to seeing the outcomes in the future as they track the patients who took part.

A final thought – at some point at every conference a scientist starts to talk about patients failing the treatment. Patients don’t fail treatments – treatments fail patients and targeted treatments will help to stop this.

¹A biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or of a condition or disease. A biomarker may be used to see how well the body responds to a treatment for a disease or condition.

Keep taking the tablets...

Three and a half days of presentations about breast cancer with hundreds of posters to look at is pretty intense: as a non-scientist I am always interested in ideas which float above the scientific analysis – my scientific colleagues can deal with the clever stuff. (Read the press releases which we issued about some of the presentations).

I also look for links to research that Breast Cancer Campaign is supporting and there are a number which shows that our research is indeed cutting edge.

One presentation which caught my attention was from British Columbia in Canada and relates to the title of this blog. It is counter-intuitive that patients should stop taking medication which is life-saving, but they do. The background is that guidelines for the care of patients with early breast cancer suggest patients should be offered additional treatments after surgery to increase their chances of survival. The principal treatment for women with oestrogen receptor (ER) positive breast cancer over the last three decades has been tamoxifen and more recently, the aromatase inhibitors.

This Canadian study looked at tamoxifen and why it is of interest to us in the UK is that it was publicly funded (as with the NHS); easily available, even to patients in rural areas, and they could track prescriptions. Despite this, they found that 40 per cent of patients took their medicine for less than 80 per cent of the days or even stopped altogether. This has cropped up in several other studies as well.

This particularly caught my attention as we started to fund a two-year project in Dundee earlier this year which will be looking at exactly this problem but expanding it to include aromatase inhibitors. They will identify which of the patients did not take their treatment as prescribed and study what effect this has had on their breast cancer returning and survival.

Identifying the barriers that prevent patients from completing their treatment courses will allow researchers to develop interventions to persuade patients at the beginning of treatment to continue to take their medication as prescribed to ensure maximum benefit is gained. Breast Cancer Campaign is committed to funding research that will lead to improvements in patient survival. We have every confidence that this project will provide essential information to help us to ensure survival rates keep improving and be able to share that information with colleagues around the world.

Hard Times but no Great Expectations

I have attended a number of these conferences in the USA over the years and they are usually awash with freebies. Firstly there is the obligatory conference satchel loaded with all the documentation – and I mean loaded as they weigh a ton. This year it is a canvas one but there are two items missing – the bottle of water and the pen. Happily the bottle of water has been replaced with an empty water bottle which can be filled from the water cooler – yay for the environment.

The second omission is stranger – there is no pen. Now a ball point pen doesn’t cost very much – why not? For those who didn’t bring pens or whose pens ran out there was a rush to the trade exhibition where the only pens seemed to be from the not-for-profits. Normally every stand is competing for the best give-aways –tote bags, memory sticks, stress balls (those foam things you squeeze to calm down!) loads of sweets and chocolates, muffins, coffee – the list is endless. This year there were two stands which had free pens and a couple with chocolates and that was that. If ever there was an indicator that economies are being made – this is it.

The exhibitors are not only from the pharmaceutical industry but also the voluntary organizations and it is always rewarding to swap ideas with our sisters in the USA.

There were just as many delegates – over 8,000 – just the companies cutting back. It is quite cost-effective for us to attend – we always get sponsorship but book our own trip – our hotel (or should it be motel) is cheaper than Travel Lodge but everything works and is clean but for some strange reason there is no plug in the basin – they don’t provide them. No meals included ,but happily loads of free food at the conference.

The day ended with a stunning presentation by another British scientist – we do punch above our weight. Tomorrow starts with posters at 7.00 ……..

Will we be able to prevent breast cancer?

Writing from the San Antonio Breast Cancer Symposium – the opening address was by a distinguished UK scientist, Professor Valerie Beral giving an epidemiological perspective on the causes and prevention of breast cancer.

Her conclusions were deceptively simple. Women who have many children, have them young and breast feed them for long periods of time have a much lower risk of breast cancer. Late pregnancy (miscarriages and abortions have no effect) and breast feeding produce changes in the body which persist indefinitely. This is interesting because while HRT and the contraceptive pill have been shown to produce a slight increase in the incidence of breast cancer once you stop taking them the increased risk goes away until a few years on there is absolutely no increased risk.

Her conclusions are stark – few women in developed countries are at really low risk of breast cancer unless they develop the birth and breast feeding patterns of women in rural developing countries. Clearly that is not going to happen- you can and should certainly breast feed if you have children but are not going to have any or many children simply to reduce our risk.

Another conclusion is that with the gradual urbanization of developing countries and the impact that has on family size, by 2030 we could see the number of breast cancers diagnosed annually worldwide double from one to two million.

There are factors which we can change: if no woman in the USA was obese, drank alcohol or used the pill or HRT there would be 40,000 fewer cases of breast cancer (140,000 against 180,000).

I think this is scientifically interesting and really does point to avenues for research – prevention is the most difficult and expensive avenue of research. But, as Valerie acknowledged, none of this is very helpful to us now – altering childbearing patterns is not a realistic option so interventions which mimic the effects of childbearing and lactation are needed.

Just remember – lies, damn lies and statistics – this is about statistics and it doesn’t mean that no woman who has children and breast feeds will get breast cancer and not all nuns get breast cancer either – I am not being facetious about nuns – the start of this research was an observation in the 18th century that nuns had a much higher risk of breast cancer than married women. That is the basis of epidemiology – scientific observation of what has happened so that you can change what will happen.

Call me old-fashioned……

Thanks to my jolly electric car I don’t often use the underground in the rush hour. This week my car is being serviced so there I was standing on the train ( a seat? Unlikely) and letting the mind wander when I noticed that two women in the row I was facing were putting on make-up. I don’t mean a bit of lippy and a dash of blusher but the full war-paint.

One finished quite quickly but the other one did a job worthy of Strictly Come Dancing without the fake tan. I have no idea if she moisturized and toned before I boarded – but given the thoroughness of the rest she must have. A very careful foundation – blusher, shaper and then the whole nine yards with her eyes. Three coats of mascara, separating the lashes in between with a little metal comb – that took two tube stops to accomplish. Even a few stray hairs were tweezed and I suppose we should count ourselves lucky that she didn’t feel the need to shave her legs as well. This process had already begun when I joined the train and took almost to Old Street to accomplish.

It is not that I don’t use make-up, or watch others do it but somehow this young woman sitting on a crowded train, oblivious to everyone (lucky her) was weirdly compelling. And what a bag of stuff she had – a plethora of brushes, tubes, pencils, jars and bits of coloured stuff – my shoulder was aching at the thought of lugging that around.

I write this in another confined space, on my way to San Antonio to the largest breast cancer research conference in the world - usually around 8,000 delegates and the main lecture hall is like an aircraft hangar with large screens everywhere – if you are at the back you actually cannot see the speaker in the flesh so to speak.

It is a fantastic chance to catch up with what is happening in the field, meet up with many of our scientists, always a few presenting their work – the Brits are usually the second largest national group presenting after the Americans . One wonders in the current economic mess we are in how science will fare in the UK and whether the infrastructure will be there so that we can support great brains to do great research. The science we fund today means lives saved tomorrow – can government take that leap of faith?

Stupid, stupid – you have been warned

I thought I was the most paranoid person about security – multiple passwords, code words, suspecting everyone and yet one lapse and the fraudsters are on the case.

Last month Number One daughter came for a visit and we had a girls day shopping and lunch. There was this very nice restaurant and their Amex (American Express) machine wasn’t working. So I went to the counter while they phoned Amex and then gave Amex all my details – not something I would normally do but I was momentarily distracted. This included my mother’s maiden name. I thought nothing more of it and I check my statement online regularly and everything was in order.

I received a call from them last Friday to ask if I had put through an online transaction for gift vouchers for £3,000*. I have never spent that much – or even close to that much in one transaction so it wasn’t me. They immediately cancelled the card.

I then received a call yesterday from the fraud department to go through various transactions and the first one they asked about was the restaurant and if there was anything unusual about it. Ping!!

Apparently the scam is that the fraudster writes on what looks like Amex paper to the restaurant (targeting London apparently), tells them their system will be down at a certain time and asks them to call a specific number to process the transaction, which of course is the fraudster’s. The fraudster can then contact Amex with the information for the transaction but has all your personal information too. Unsuspecting restaurant and customer........ Amex is communicating this to the restaurants and me to you!

If this should happen and a trader should ask you to speak to the card issuer on the phone – insist on calling the number on your card. Do not give any information if they just hand the phone to you.

*This particular crook pre-warned Amex that the large transaction was coming through online so that it wouldn’t be blocked and has set up a new telephone number and also advised of a change of address. Hope they get her!

Another strange thing happened a couple of weeks ago – I had a letter from Santander saying that someone purporting to be me had applied for credit and they were confirming this was actually me. I called them immediately – they had no further information as it was online but it is obviously related to the incident above.

Amex has been great but I am incandescent with rage with myself – just one slip....

Both Amex and Santander have tagged me at CIFAS so that if anyone tries to obtain, say, a new credit card, even if it is me, they will require further identification. CIFAS is a not-for-profit fraud prevention data sharing scheme.

Is my cancer better than your cancer?

Of course not – what rubbish but if you read Karol Sikora’s article in the Daily Mail this morning A Stalinist NHS quango and British cancer victims denied drugs available in Europe you would think that was the case.

I won’t reprise the facts which you can get from his article but in summary NICE has refused to authorise the use of a drug called sorafenib to treat a particular kind of liver cancer. They say that it is too expensive for the extra months of life it can produce. The article explains this but it is worth repeating that “average three months” means that some people will not respond at all and die quite quickly (that happens in all cancers) and some will live for months if not a couple of years. This is unpredictable so they look at the average which is not unreasonable. The point that is made is that only about 700 people a year might benefit from the drug so the overall cost is, in health economic terms, not that high.

So far Karol and I are as one: then he goes off into “my cancer is better than your cancer” world. Several years ago a new breast cancer drug was launched – Herceptin. The results of the trials were startling and there was pressure to persuade government and NICE to fast-track this through. The consequence of this was not only that Herceptin was approved but that NICE changed its processes so that there could be a fast-track for other drugs under certain circumstances. Yes there was a campaign, yes there was a huge amount of press activity and I am sure that influenced government. Isn’t that good? Doesn’t that open the doors and point the way for other diseases to follow?

If we hadn’t had the two week urgent referral target for breast cancer would we now have it for all cancers? Would we have had the amount of media coverage for sorafenib, including families of patients who had been denied it speaking out if breast cancer campaigners hadn’t already shown how successful this could be?

A reality check: breast cancer is the MOST COMMON FORM of cancer. There are 45,500 new cases of breast cancer in women each year (and about 300 men). That is more than the number of men affected by prostate cancer (35,000), the number of men and women affected by bowel cancer (37,000) and lung cancer (39,000). It isn’t more important or a better cause than these cancers – it is more common.

Research has been successful and survival rates are improving but still 12,000 women (and about 90 men) die each year so we have a way to go. Breast cancer isn’t one disease – there are many breast cancers and we are getting more and more targeted treatments. What we really want to be able to do (in all cancers) is accurately predict which patient will respond to which combination of drugs – we are getting better but it is still a blunt tool and many millions would be saved (and unnecessary pain and suffering) by only giving drugs to patients who will respond - Breast Cancer Campaign is supporting this type of research.

There is a serious problem with the rarer cancers and it isn’t the amount of media publicity they get or whether or not drugs go through NICE. It is the amount of research that is done. We only have advances in treatments and understanding of causes/risks because of research and I recognise that because of the large number of people affected by breast cancer it is a fruitful area for research. NICE decisions sometimes make a mockery of research – what is the point of doing the research, which very often is funded by charities, unless the success is shared with patients.

So Karol and I might be not be so far apart until “Championed by a hugely powerful feminist lobby its (breast cancer) high profile is reflected in the large sums given to screening programmes, clinics, drug treatments and publicity campaigns”.

Karol you know better than that, let’s rewrite that in a factual way.

Championed by a huge number of women who suffer from breast cancer and families who have lost mothers, wives, daughters and sisters, breast cancer has a high profile. It is a disease which can be and is screened for. It has been responsible for the development of the multi-disciplinary clinical team to treat the disease more effectively. Through the adoption of successful research there is now a wider range of treatments for the disease and publicity campaigns aim to use every means available to educate women about the risk factors so that they can change their lives to reduce their risk and also the symptoms so that they can be treated early in the disease which will improve their chances of survival.

That sounds a bit dull I suppose – give me facts and dull every time.

P.S. Daily Mail online used a photo of the then Mayor of London, Ken Livingstone (remember him?) publicising our major fundraising event wear it pink for us. Note to Karol Sikora: politicians like posing for pictures with glamorous models because newspapers print them.......

From a red poppy to a pink ribbon

Sunday started on a sombre note – we always watch the Remembrance Day service from the Cenotaph (on television). In the years when South Africa was out in the cold politically, I used to be frustrated that they could not be included in the service when so many South Africans volunteered, fought and died alongside the British army in WWII. My father was a surgeon on a British hospital ship (the Amra) and was behind the navy for many of the invasions. Number One Husband had cousins in North Africa and in POW camps. It is a time for reflection, gratitude that we never had to do what they did – and of course now a very poignant time to remember the soldiers who are fighting and dying now.

However, the day ended on a truly joyous note, full of wonderful music, inspiring words and a great energy and enthusiasm about what Breast Cancer Campaign is doing and the people who are making it possible at the Pink Ribbon Gala Concert at the Cadogan Hall, with Debbie Wiseman and the Royal Philharmonic Orchestra.

The concert was Debbie’s inspiration and she undertook the huge task of organising the concert and persuading actors and actresses to become involved. She is an award-winning composer of over 200 film and television productions. You may not recognise her face but will remember the music from productions such as Judge John Deed, Tom and Viv, Wilde (with Stephen Fry), Before you go, Jekyll – have a look at Debbie Wiseman’s website.

She created the most amazing programme, interweaving her music with readings from T S Elliot (Tom and Viv) and Oscar Wilde (Wilde) and a reading from Hilaire Belloc against music by Benjamin Britten with other music by Borodin and Tchaikovsky. The readings were by Timothy West, Prunella Scales, Cherie Lunghi and George Layton. All was expertly sewn together by the ‘voice of Classic FM’ – Simon Bates.

There was also the world premiere of a beautiful song sung by Mary Carewe – “Nothing Grows on Gold” music by Debbie and lyrics by Don Black, which will be in their musical Feather Boy next year.

Perhaps the secret of her great success in writing scores for a visual medium is that she can bring together the words, the music and the visual. Images of our supporters and volunteers and of our fundraising floated across the screen behind the orchestra providing a wonderful backdrop for the music and words without intruding.

Number One Husband and I go to lots of classical concerts – probably our favourite hobby - and we have seen great musicians and heard great music. Debbie conducted the Royal Philharmonic Orchestra last night and brought a vigour and enthusiasm beyond the music and words which translated into an energy which was palpable in the audience.

Everyone was smiling as they left – a great tribute.

The banks that like to say no

Last week was wear it pink and this week our supporters are paying in the money they raised. Well – you might hope so. But we have heard from several supporters who have tried to pay in money on the paying-in slip provided to their own banks and have been refused or told to pay extra.

We provide specially coded paying-in slips to supporters so that they can pay the money into any branch of any bank – and we pay a small extra charge for them to do that. Otherwise they would have to find a branch of Barclays – our bank – to pay in the money.

It is tough enough raising the money without then having to struggle to pay it in. So far complaints have come in from supporters trying to pay into Lloyds TSB and Royal Bank of Scotland. Our guys at Barclays are on the case and have written to them but clearly the message isn’t getting across to everyone.

We really do try to make it as easy as possible for people to raise money for us – the effort is significant, the generosity is wonderful, the stories behind why people are doing this are heart-rending and the impact, when translated into research, is life-saving. And then someone at a bank gets in the way.

I really don’t want to turn this blog into a whinge-fest but we seem to be walking through treacle at the moment. First we are savaged by the postal strikes which have left unhappy supporters out there and may well damage our Christmas card sales, and now this.

Hey guys – give us a break. All we are trying to do is raise money to beat breast cancer – that’s challenging enough without having to fight you too.

wear it pink® - text PINK to 81400 and donate £2*

The last Friday in October is the day for our national fundraising campaign to raise money for breast cancer research. Thousands of people all across the UK will be wearing something pink and donating at least £2 to beat breast cancer.

Yes it does seem frivolous and it is a bit of fun but doesn’t take away from the seriousness of the disease or the urgency of the research it will fund. If it helps us raise close to a third of our income – that isn’t frivolous.

Many of our corporate supporters have told us how it helps team building and gives a purpose to a dress down day as well has being incredibly easy to do. We are no different. Everyone is wearing something pink today. In true British tradition, the men are as likely to go down the pink tutu and angel wings route and one brave soul is wearing a sleeveless pink shift to go with his pink wig and six inch pink platforms (all of which are alarmingly fetching) – but the beard grown in defence rather gives the game away. We will all be contributing our £2 of course.

October is our busiest month of the year and although today is no less busy this bit of light heartedness has relaxed everyone. Happily I wear a lot of pink anyway so a pink shirt and pink jacket were just waiting to be worn although my pink clogs are probably not normal business wear.

At 11 o’clock is the finale of the October bake-off where every Friday different teams are bringing in cakes they have made and this has revealed some very talented bakers. Then there is a raffle and also a jigsaw which you win if you pick out the numbered piece – fitting as of course our logo is a puzzle piece and our aim is to put in the missing pieces of the puzzle that is breast cancer.

Frivolous - yes; great atmosphere in the office – yes; forgetting the reason why we are doing this – no; doing something about it – of course!

*If you text PINK to 81400 you will be donating £2 to breast cancer research – and it will cost you £2 in addition to your normal network charge for a text message. Go on – you know you want to.
SMS T&C's

A mega mega-raid – update

When all the cash was counted past midnight on Friday – we raised a record £50,617.82. Volunteers came and went from early in the morning to support the team until the last penny was counted – a mammoth effort. I guiltily admit that I wimped out just after 7.00 – so well done to everyone.

Mega-Raid and mini-rant

Today is one of my favourite days of the year when I down normal tools and become a volunteer. It is our annual mega-raid where Raggies (students!) descend on London and collect for us in a number of central stations to support Breast Cancer Awareness Month and next week’s wear it pink. They collect the money and we support them which means that almost every member of staff is involved because they want to know how much each team has collected at the end of the day.

Our Community team has the logistics of this down to a fine art. One staff team comes equipped with back packs and travels all over central London collecting cash and bringing it back to base. The other team takes over our main meeting room and counts and bags the money. That’s the best bit and I elbow my way in to make sure that I get to operate one of the cash counting machines. The money is then banked by the third team.

As I write this during the afternoon we have already passed the £25,000 total and we will work until all the money has been counted and taken away.

It is also an opportunity for me to talk to some of our volunteers and members of staff that I don’t normally spend much time with and also to forget about the nightmare that is the Royal Mail strike. We were savaged by this a couple of years ago and here we go again – just at the time when we need the mail the most. We have volunteers all over the country who are going to great lengths to raise money for us – we raise over a third of our income this month – and they can’t get the materials they need and are frustrated, as are we. We have had to resort to much more expensive ways of sending things which isn’t how we should be spending our money.

It isn’t just business that is affected by this – charities are as well. We have staff who work nights and weekends without overtime. We are incredibly grateful for all our supporters, volunteers and staff at this time of year. As much as strikes like this are complex issues, the inadvertent impact for organisations like ours is less funds, and in our case that’s less money for life saving research.

To our supporters, I say please bear with us through this period if your fundraising materials haven’t arrived and we all hope the strike is resolved as soon as possible.

Unknown unknowns...

They laughed at Donald Rumsfeld when he came out with his quote - “There are known knowns. There are things we know that we know. There are known unknowns. That is to say, there are things that we now know we don’t know. But there are also unknown unknowns. These are things we do not know we don’t know.”

I am not a fan of his for a number of reasons but this was wiser that we gave credit for at the time. I was reminded of it by the Annual Report of the Chief Scientist of the Food Standards Agency (FSA) who quotes it in relation to food safety. The FSA was set up in the wake of the BSE crisis to restore consumer trust in the safety of the UK food supply. BSE was an unknown unknown. Until the 1980s we didn’t know about it and also didn’t know that we needed to know about it.

Organisations like the FSA and charities like ours involved in medical research do what is called “horizon scanning”. Is there anything out there which could be a risk but which we haven’t thought of yet? In breast cancer we are identifying risk factors which no one knew were risk factors – what we do about them is another matter – but “knowing” takes us a step closer to beating breast cancer.

This also came to mind as a colleague is pregnant. When I had my children some time ago there was little advice on diet. What we “knew” then was based on very little evidence, my suspicion is that it may have swung too far over the other way – but that’s my personal opinion and not an informed one.

I was told that spina bifida was caused by potato blight (it isn’t, we now know that you can reduce the incidence by taking folic acid) so avoided potatoes for the pregnancy. I was also told to eat liver at least once a week (no – no – too much vitamin A) and didn’t drink because it made me feel nauseous (as did coffee and tea) rather than because it wasn’t good for the baby. Shellfish, soft cheese, uncooked eggs – none of these were considered a problem. On the other hand we accepted a higher rate of miscarriage and also, if you couldn’t become pregnant it was a misfortune but there was nothing that could be done.

I wonder what unknown unknowns are still out there lurking.......

Read Andrew Wadge, Chief Scientist FSA, blog

After the ball is over...

The fifteenth Pink Ribbon Ball, Breast Cancer Campaign’s flagship event and the highlight of Breast Cancer Awareness Month, was on Saturday night and was hugely successful. We raised over £160,000 (so far) which is extraordinary in these times. My claim to fame is that I have been at all 15 and each year I think that it can’t possibly get better and it does.

We have a great committee and an excellent team in-house and a ton of volunteers – it doesn’t just happen.

Martine McCutcheon was our first ever patron of the Pink Ribbon Ball and was truly a star on the night, speaking movingly and talking to everyone with great enthusiasm and she looked amazing (see the photo). She also drew the raffle and gave first prize to the winner – a five night stay for two in Florence.

Hollyoaks actor Kevin Sacre successfully bid for a painting of a flamenco dancer in the silent auction for his fiancée Camilla Dallerup (Strictly Come Dancing). Camilla very kindly agreed to pose for a picture with a group of male guests who each donated £100 to the charity for having their picture taken with her.

One of our long-term supporters, Kirste Snellgrove, spoke about her own experience with breast cancer and how it hasn’t stopped her running 18 marathons since she was first diagnosed. Linford Christie and singer Sonique presented her with a bouquet of flowers (see picture) and many hugs.

Watch out for Now magazine for coverage.

It was nearly 3am when I got to bed and when I woke up on Sunday morning I was relieved that I rarely drink alcohol – the thought of being exhausted and hung-over is too much to contemplate.

P.S. The title of this blog is from an 1890s music-hall song - a sad tale – check Wiki. I could have used another song from that era - “It's three o'clock in the morning, we've danced the whole night thru” – but I didn’t dance. It is not that I am over 100 years old, I just seemed to have absorbed these lyrics by some process of osmosis.

NGR-1 at Number 10 Downing Street

I was at Number 10 last night with our Chair of Trustees, Isla Smith and our celebrity supporters, Diana Moran, Linford Christie and Angelica Bell. There was a wide range of people with an interest in breast cancer to celebrate the achievements of research and care with the Prime Minister and Sarah Brown. These included not only our celebrity supporters but also representatives from the main charities involved in various aspects of breast cancer, the breast screening service, scientists, clinicians, nurses, volunteers and patients.

Sarah Brown spent a lot of time talking to the guests – she said to Angelica and me that the PM had only decided to do this a couple of weeks ago because not only was it Breast Cancer Awareness Month (BCAM) but he felt that we didn’t do enough to celebrate our achievements.

He spoke about various groups and the work they do and then about research in the UK and “even this week there has been work published on a new gene NGR-1”. I quite shamelessly elbowed my way towards him at the end of the speech and said that, firstly this was research we supported and secondly that the government needs to support the Charity Research Support Fund otherwise ground-breaking research like this will not be supported to the same extent in the future. We won’t let it rest there and will continue campaigning – so much done and so much more to do. See our report Full Economic Costing.

It was a great feeling to be there – there are so many people working really hard to make life better for women with breast cancer and we do focus very much on what still needs to be done rather than achievements in the past. We have our next Scientific Advisory Board meeting in November when they will be deciding on the next round of research grants – so much to do.

The week isn’t over yet – tomorrow is our Pink Ribbon Ball. It is the highlight of BCAM and a huge amount of effort for the committee, volunteers and staff. The Ball is like the swan – serene and beautiful on the surface and paddling like mad underneath.

Campaign hits the headlines

If you read my blog on Monday 5 October you will have seen the information about the research which Dr Paul Edwards from the University of Cambridge has just published in the American journal Oncogene.

The story made front page headlines in the Daily Telegraph and was featured in the Daily Mail, The Times, The Sun, Daily Mirror, Daily Express, London Lite and The Evening Standard. It was also featured on BBC News Health online and the websites of all the national newspapers including The Guardian and The Scotsman.

It is exciting research and it is gratifying to see such a great response from the press to something which is significant and yet quite technical. The impact of this research on breast cancers and possibly a number of other cancers is still in the future but it takes us a step closer.

You can't be in this office and not be aware of BCAM and wear it pink - our major fundraising initiative on the last Friday of October. The Scottish Sun (see picture) brought together research, wear it pink and even politics (or at least politicians) in this month where politics is also high on the agenda.

But - the Parties are over....

The political party conference season that is: Breast Cancer Campaign worked in collaboration with Breast Cancer Care and Breakthrough Breast Cancer to host a breakfast forum at each conference to discuss health inequalities in people affected by breast cancer. They were very well attended and it was gratifying to see the interest from all of the parties. There are many successes in the field of breast cancer but there are still inequalities in knowledge, in treatment and very worryingly in outcomes.

There were not only politicians around the table but also a range of experts. All the discussion will be pulled together by our teams and we will act to address these inequalities during what will no doubt prove to be an interesting year. As the Shadow Secretary of State for Health, Andrew Lansley, said in his speech to the Health Hotel on Monday night - this time we know that there will be an election before the next party conference season.

Nobel Prize for Chemistry

The Nobel Prize for Chemistry has been won by a woman for only the fourth time in its history.

Professor Ada Yonath, from the Weizmann Institute of Science shares the prize with Professor Ramakrishnan of Cambridge and Professor Steitz from Yale. The prize was won for their work on the ribosome's translation of DNA information into life. The significance of this is that ribosomes produce proteins, which in turn control the chemistry in all living organisms. As ribosomes are crucial to life, they are also a major target for new antibiotics.

Absolutely crucial to their research was the use of X-ray crystallography.

My all-time hero was Marie Curie who was the first woman to win the Nobel Prize for Chemistry. It is thanks to her work that today we have radiation treatment for breast cancer and X-rays for diagnosis. Her story is fascinating and reveals the commitment and dedication added to brilliance which is what characterises leading scientists: genius is not enough.

They were an extraordinary family – she and her husband, Pierre, were awarded half the Physics Prize for their research on the radiation phenomenon which was discovered by Henri Becquerel (who won the other half of the prize). Marie Curie was then awarded the 1911 Nobel Prize in Chemistry for her discoveries and studies of the elements radium and polonium. She is the only woman so far, who has been awarded the Nobel Prize twice.

She was also a single mother – her husband was killed in an accident when their daughters were only eleven and two. She was subsequently made the first woman Professor at the Sorbonne. Their daughter, Irène Curie, shared the Nobel Prize in Chemistry in 1935 with her husband Frédéric Joliot, in recognition of their synthesis of new radioactive elements.

An amazing story and links into this year’s Nobel Prize for Chemistry where the use of X-ray crystallography played such a key role.

Breast Cancer Campaign's logo is a puzzle piece because research is like putting all the pieces of a puzzle together: the pieces are all there, we need to find our how they fit. This week research we supported found another piece of the puzzle which will lead us to better diagnosis, treatment and prevention of breast cancer.

The value of transparency

I am a member of the Human Tissue Authority and ten days ago I attended one of our regular meetings. This was one of the two meetings we hold in public each year. It is a little strange to start off with but within a few minutes the meeting takes its shape. (If you are a fan of reality TV you will realise how quickly the participants forget that there is an audience!)

The meetings are always interesting and stimulating and with such a wide range of people with different backgrounds on the Authority there is neither a lack of differing views nor a reluctance to express them.

One particularly thorny issue is the question of informed consent with live organ donation. If, as has now happened, it is found that two people who believed that they were genetically related are not – does that change the view of informed consent? For example, if a father agrees to donate an organ to a child and then finds out that he is not the father – you could argue that the basis on which he gave his consent has changed.

There were many different views and as many proposed solutions and there is still much discussion to be had to resolve how we deal with this in the future - but we agreed that consent cannot be presumed to exist.

I was gratified to hear from one of the audience at the end how pleased he was to hear a robust debate between the members. This is why transparency is so important - it is the way of all our meetings where differing views are expressed openly and debated thoroughly but unless you see it for yourself how would you know.

Big steps, little steps

We all arrived at work on October 1 to find a pink item on our desks to be worn that day. This was to remind us that it is Breast Cancer Awareness Month (BCAM) and wish everyone luck with their activities during the month. The more successful our fund-raising the more research we can support and we will be able to take giant steps instead of little steps. (I am reminded of a game I used to play with my children when they were small which involved giant steps and little steps to get to the winning line).

OK – this is not the most sophisticated analogy and you don’t solve problems by throwing money at them but breast cancer is one problem which does need money wisely invested to take us a step closer to a solution. We have a brilliant Scientific Advisory Board and only the best research gets funded. In fact one of our research projects publishes its results today in the journal Oncogene. Research done by Dr Paul Edwards in Cambridge has identified a breast cancer ‘guard’ gene which will help us understand how normal breast cells become cancerous.

There are very interesting genes called “tumour suppressor genes” – they do what it says – suppress the action of a cell which is trying to become cancerous. If they fail then cancer develops. Dr Edwards has discovered a tumour suppressor gene called NRG1 which is damaged in over half of all breast cancers. As Arlene Wilkie, Director of Research and Policy at Breast Cancer Campaign said, “Knowing the identity of this gene will lead to far more detailed studies of how it works and how it is involved in breast cancer development. This research is a major step forward in understanding the genetics of cancer and could open up a host of new strategies to improve diagnosis and treatment.”

A giant step forward but only the first of many which need to be taken – so roll on BCAM and let us hope that we raise lots of money!

Read the BBC News story about the research done by Dr Edwards.

October is Breast Cancer Awareness Month

Women at Pink Aerobics, held in Regents Park on Sunday, posed for a photo to acknowledge the 46,000 people who will be diagnosed with breast cancer this year

There is so much happening at the moment that I am almost bewildered about where to start. October is Breast Cancer Awareness Month – or BCAM as it is referred to. One very important element is that it is a key time for us to get the message out about breast awareness – still too many women do not know what to look for and delay going to the doctor. See http://www.breastcancercampaign.org/breastcancer/aware/

However, it is also a very important time for us to raise money and that is where the bewilderment sets in. There is a huge range of our pink related products to buy, each one of which makes a contribution to research into breast cancer. You can go to the main Debenhams store in Oxford Street in London, or any large Debenhams store every day in October, and see staff and volunteers cycling the equivalent distance to the moon. There is a pink sparkly piggy bank which has my grand-daughter’s name on it – am toying with the mouse and mouse-pad – is that a sparkle too far?

The big ASDA Tickled Pink campaign has also launched and I shall be popping in to my local ASDA store to stock up on pink Energizer batteries and maybe a pink feather duster! The pink wellies from a couple of years ago have certainly earned their keep in the garden.

Sometimes people think that all this pink stuff has gone too far. None of this is to trivialise breast cancer as a disease. We do this for three reasons. First, women need to be aware of what the risks are and the possible symptoms: second, we need research to find out why breast cancer happens in the first place, how to treat it most effectively and how to prevent it; third, we need to ensure that any new developments are brought to patients as quickly as possible. (I will write more about aspects of these over the next few weeks).

None of these can be solved just by throwing money at them, but without money none of this would happen. The huge push this month is to raise that money so if at times you feel a bit “pinked out” – remember why we are doing it.

Sometimes even we also need reminding and a moving letter came in from one of our supporters last week. She and her colleagues had taken part in one of our £100 Challenges and raised over £700. She said that they had all had a wonderful time and then went on, “The work you do is so worthwhile and I speak from personal knowledge. I am still a breast cancer survivor, having been fighting the disease for almost 20 years and am now benefiting from infusions of the brittle bone drug you mentioned in your pamphlet as part of the trial at Sheffield. Mostly, thank you for your support which helped lead to that important discovery to which I owe my continued health. If it was not for fundraising such as you organise, I perhaps would not be writing this letter to you now nor helping to fund raise again in the not too distant future.”

A New Year

It is the start of the year 5770 of the Jewish Calendar on Friday night. I grew up in an Orthodox home, although we were not strictly observant. I have lapsed somewhat since then and although my Jewishness is always part of me I don’t attend synagogue anymore.

However, old habits die hard and this time of the year has a rhythm and deep meaning which is triggered in me anyway. On the eve of the New Year, it is said, the book of judgement is opened and everyone is judged according to their actions in the past year and their fate determined for the next year. However, all is not lost because you have ten days to change that judgement for the better by repentance, prayer and charity and then the book is sealed on Yom Kippur – the Day of Atonement.

I don’t believe the literal word of this but it is a wonderful reminder of what is really important in life. In my terms it is a time for reflection and also for making that call to that person you have not spoken to recently, for reviewing charitable donations and also building bridges where you may have fallen out with someone. It may have nothing to do with religion – but it’s not a bad thing to do.

For us this year it is quite a poignant time as my mother-in-law died in Cape Town this week. As my grandchildren would say – she was 99¾. It is a sadness but not a sorrow as she led a good life until the last couple of years where the quality declined rapidly and her end was a release.

My husband and his brother are there now and I will welcome the New Year with our London family with plenty of sweet things to ensure a sweet year and we will Skype the Swiss family and eat a virtual apple in honey together.

Leshana tova tekatev v'etachetem -- May you be inscribed for a good year!

Who is the customer, us or the bank?

Thanks to all the efforts of our supporters and donors we receive cheques in the post every day – that is when there isn’t a strike! If there is something special on we receive quite a number. They are diligently entered onto a spreadsheet and then deposited at a nearby branch of our bank.

When a colleague went to do this on Friday she was told the manager wanted to speak to her. The manager proceeded to say that depositing all these cheques was causing them a lot of work and please would we use something called cheque advantage where the cheques are then sent to a central sorting office.

We don’t really want to do this. We used to but then the bank lost a bag of cheques. Once we had established that they had lost the cheques (we were receiving calls from supporters asking why we hadn’t deposited their cheques) the obvious thing seemed to be (to the bank) for us to write to each donor and ask them to reissue the cheque. Sounds obvious until you realise the scale of the problem and think about the marathon runner: he had sent in a bunch of cheques from his friends, family and work colleagues, some were from the UK and some from abroad. After all the effort of running the marathon and then collecting the money – to write to each of them again and hope that they will be prepared to take the trouble to cancel the cheque and issue a new one – you must be joking!

After much wrangling they paid us out the amount on the deposit slip in compensation – we had evidence that they had the cheques. As it was, said marathon runner had to write to every person who supported him to tell them what happened and that we had the money anyway even though their cheques were not going to be presented. That was just one example. It cost us a huge effort and we were without the money for months.

So Ms Branch Manager – we won’t be using this service – sorry your staff will have to process the cheques.

The big move

This short four-day week seems very long and I can’t say I am sorry to see the end of it.

We have been in our current offices for ten years and have just signed a new lease and taken a bit more space. We had to refurbish and for various reasons beyond our control the dates for this slipped later in the year that we would have liked. Imagine a supermarket doing major refurbishment a few weeks before Christmas – that’s us, moving three weeks before our biggest month of the year – October, Breast Cancer Awareness Month (BCAM).

On Friday last week everyone packed up ready for a move over the weekend and by lunch-time on Tuesday everything was pretty much unpacked and, apart from some technical hitches, up and running. Colleagues have worked very hard (especially the IT team who worked over the bank holiday) and been very patient. We tried our best to minimise any impact on our supporters and I hope that we have not inconvenienced them too much.

As many colleagues as we could cram in, moved into the lovely new part of the offices on the second floor and eight of us squashed into a small section of the office on the third floor while the rest of the floor was stripped. The attached photo is a view from my desk.

I have had a luxury of my own office for a few years now – glass walls because I can’t bear not being able to see what is going on! It is so nice though to be back in a general office and sharing a desk pod with four colleagues. I am not sure that they appreciate my ability to talk about one thing and do another, the sighs of relief are almost audible when they see me pack up to go to an external meeting.

There has been a sense of déjà vu – reminiscent of our offices before we moved ten years ago. There were about ten of us then and we worked on odd bits of donated furniture in a decrepit office which we rented on a three month rolling lease as the building was due for demolition. There was very limited email (!) and we certainly didn’t use it internally – we could all talk to each other. Now everyone seems to email rather than talking.....

Going back even further than that, in our first BCAM we bought pink ribbon and safety pins from a well known department store and made our own pink ribbons – we now distribute hundreds of thousands every year. (Small historical note: in 1993 Evelyn Lauder, Senior Corporate Vice President of the Estee Lauder Companies, established the Pink Ribbon as the symbol of BCAM). I am sorry to say that it has become somewhat exploited since then, most recently by bogus charity clothing collectors, but still acts as a strong visual reminder.

Breast Cancer Campaign has come a long way since then and thankfully so has the diagnosis and treatment of breast cancer. Women diagnosed with the disease today have a far better chance of survival and also a better quality of life as treatments have improved and we’re a step closer to beating breast cancer. However – everything is relative and while all the treatments on offer today are improved – surgery, radiotherapy, hormone therapy and chemotherapy – and preferable to the consequences of not receiving treatment – they are still traumatic and some have long term negative health consequences. They also fail the 12,000 women who die each year.

So, as we approach Breast Cancer Awareness Month, breast cancer’s report card reads “some improvements but must do better”.

As we are in the silly season

Our offices used to be in Holborn and I remember struggling through hordes of tourists who would pour out of the tube station and then congregate on the pavements while they worked out which way to go. The boot was on the other foot when we visited Florence earlier this year and I snapped this on the wall of a building in one of the side streets...

Bliss was it in that dawn to be alive....

Ok, so that is a bit over the top (and Wordsworth wrote it about the French Revolution!). I don’t care all that much about sport and yet sat glued to the television all day on Sunday watching England thrash Australia at the Oval and bring the Ashes home. The tension was great and the excitement high. For me the highlight of the match was when Andrew Flintoff (in his last test match) ran out Ricky Ponting – Australia’s captain and leading batsman. Once Number One husband who is a sports fanatic explained to me exactly how far he had thrown the ball and knowing how narrow the target is – words fail me!

It is curious how something like this can lift the spirit – and the interviews with all the players after the match were a succession of gracious speeches with no-one wanting to take credit but dish it out across the team. Wish that other walks of life (or even sport!) were the same.

For those of you who know even less about cricket than me, Wiki says that: The Ashes is a Test cricket series played between England and Australia. It is one of international cricket's most celebrated rivalries and dates back to 1882. The series is named after a satirical obituary published in a British newspaper, The Sporting Times, in 1882 after a match at The Oval in which Australia beat England on an English ground for the first time. The obituary stated that English cricket had died, and the body will be cremated and the ashes taken to Australia. The English media dubbed the next English tour to Australia (1882–83) as the quest to regain The Ashes.

During that tour a small terracotta urn was presented to England captain Ivo Bligh by a group of Melbourne women. The contents of the urn are reputed to be the ashes of an item of cricket equipment, possibly a bail, ball or stump. Some Aborigines hold that The Ashes are those of King Cole, a cricketer who toured England in 1868. The Dowager Countess of Darnley claimed in 1998 that her mother-in-law, Bligh's wife Florence Morphy, said that they were the remains of a lady's veil. So now you know more than most of the cricket fans.

Work is a bit strange at the moment – our offices are being refurbished after ten years so people are packing up stuff as we move to temporary desks as one section is done after the other. Quite a number of colleagues are on holiday but those that are here are working flat out as this is a crucial time of the year for us as we ramp up to October, Breast Cancer Awareness Month, which is our major fundraising “season” of the year. I move on Friday to a temporary desk for a few weeks – be nice to sit with colleagues for a change.

More than chocolate and cuckoo clocks

Just back from a few days in Basel, Switzerland, with Number One daughter and family which now includes a new puppy. Reminded me no matter how much I miss our dog I don’t miss the responsibility. Bit like grandchildren – wonderful to have all the fun and none of the responsibility!

It is difficult when you visit somewhere several times a year not to make comparisons – and I don’t just mean about the trains and trams running on time. It is a slightly unnerving experience, being used to London Transport, arranging to meet someone at 10.15 and knowing that you will be there exactly at 10.15 because that is the time that it says on the timetable. This was reinforced when I flew back into City Airport to find that the DLR was suspended. Pity the unsuspecting tourists who are then left to puzzle out what to do next with staff who speak only English. City Airport – a joy as it is the closest airport to home, very quick check-in and the fare is surprisingly reasonable – hardly a budget airline but pretty cheap compared to rail travel within the UK. Fortunately, I had ordered a mini-cab and the door-to-door journey took three hours and forty-five minutes – less than to many UK destinations.

Number One grand-daughter started at the local Swiss school last week. The children are taught in High German but speak Swiss German in the playground. She speaks neither and was treated with courtesy and care and a couple of children who speak English or French (as does she) were happily translating for her. She starts extra German classes (provided by the school) next week and is happily watching Dora the Explorer and Mickey Mouse in German. Primary school starts a year or more later than in the UK and handcrafts, music and other “non-core” subjects are very much part of the curriculum. Does this give us more rounded children under less pressure? Time will tell. In the mean time she will speak three languages – English which is home language, French which she has already learned and two varieties of German.

On Friday night was the Basel Jazz Festival. The centre of town was packed with people, most of the roads closed; make-shift bandstands were set up on various corners and bands played a set or two and then moved to the next one. Restaurants and bars had put up trestle tables on every inch of pavement (and road) and some had groups playing inside as well. Much, much alcohol was drunk – and food eaten. But the atmosphere was friendly and relaxed, there were no police to be seen and all generations were represented from some rather elderly matrons tucking into giant ice-creams at Mövenpick to young people spilling out of the bars.

There were no drunks throwing up in gutters, groups of men or women lurching around “out of it” nor any aggression, and walking home alone posed no threats to personal safety. As a nervous Londoner I had the strap of my handbag around my ankle with my foot on the bag while I ate dinner, while the Swiss had their mobile phones lying on the table, handbags left available to grab – and no one did.

A survey of Breast Cancer Campaign colleagues revealed that 40 per cent have managed to escape having their wallet/purse stolen and the rest have had theirs stolen any number of times from once (most) to 10 or 12 times or “too many to remember”. Basel is starting to win me over.

Yuck, yuck, yuck!

Breast Cancer Campaign lent its voice to Bowel Cancer UK’s excellent campaign for a screening programme for bowel cancer. Like with many cancers, early detection is very important and very often symptoms do not appear early enough or are missed by the individual and the doctor. A pilot programme was successful and this is now being rolled out across the country for individuals between the ages of 60 – 69.

For more information have a look at Bowel Cancer UK’s website - and also the NHS website.

Being of mature years I received my envelope in the post in late June. I read it through briefly, it seemed complicated and somewhat distasteful so I did what I normally do with all unpleasant and important things, I “filed” it in the pile of papers on my desk. I kept noticing it and thinking that I must do something but did nothing. I then received the follow up mailing saying that I had 13 weeks to respond and then my name would be removed from this round. Panic – I can’t NOT do it.

So I read the instructions again more carefully and it isn’t that complicated. I have dealt with my fair share of pee-ing into a plastic container (surprising what levels of accuracy you can attain over the course of a pregnancy where this happens at every check-up – the gals will know what I mean, the guys will be bemused). I have also changed hundreds, if not thousands, of nappies for children and grandchildren but catching your own poo reaches levels of yuckiness not yet attained. There is also some interaction with little strips of cardboard - no - too much information.

Anyway, the deed is done (three deeds if that isn’t too much information) and it will shortly be in the post. It is a darn sight less uncomfortable than having a mammogram but I wonder how many people will just be put off by the yuckiness. Intellectually I know how important it is to do this but despite that I was more driven by guilt of how I could own up to not doing it rather than by my own health. Curious and irrational!

Diminishing talent: rise of the professional politician

Groucho Marx once said, “I don't care to belong to a club that accepts people like me as members.” Who would want to be a politician now?

As an immigrant of many decades, I am very protective of all the reasons why I chose to come and live in this country and like any convert can be very passionate about it. Faith in the Parliamentary system was one factor. I am not bothered by the odd bad apple – goodness there have been enough scandals over the decades, although the latest expenses scandal is overwhelming. It is also profiteering with tax-payers money rather than exploiting position and influence which many past scandals have been.

I am now troubled by what seems to be a gradual but relentless shift from being served by people who had a vocation for public service, in addition to whatever the day job was, to professional politicians. It actually doesn’t matter whether the day job was trade union official or merchant banker – if there was a big enough spread, the best interests of society would be served within the limits of the governing party’s policies. If you didn’t like the policies you voted that lot out.

We are now gravitating to a situation where we will be governed by professional politicians who won’t have jobs in the “real” world which we all live in and what is more, may never have had jobs outside politics.

Thanks to Iain Dale for pointing me to this article by Paul Goodman, who is standing down as an MP at the next election, in the Daily Mail yesterday. He confirms all my worst fears and he is speaking as an insider. He says, “In short, the Commons is set to become a chamber of professional politicians, dependent on the taxpayer, and remote from the millions of Britons who aren't.”

Organic food and nutrition

We do not live our lives based on evidence – we are governed by custom, superstition, belief and irrationality (amongst others). If you want to understand just how irrational we are I recommend getting hold of a copy of Irrationality, the enemy within by the late Stuart Sutherland. It is a brilliant book written for a lay audience which sets out very clearly how our behaviour is influenced and gives examples of common failures of human judgment.

However, evidence does matter, and matters hugely in some areas. We need very good evidence before drugs are allowed to be prescribed and Breast Cancer Campaign, as an organization, bases every statement we make about breast cancer on evidence. This is why we sometimes hedge our remarks on recommendations on areas such as diet. There is some evidence and lots of supposition.

I am on an external committee for the Food Standards Agency called the General Advisory Committee on Science – GACS to its friends. It was established in December 2007 and provides independent advice on the Agency's governance and use of science. The Committee's work includes horizon scanning, science governance, developing good practice and informing science priorities.

I mention this because there are always conspiracy theorists out there who ferret out connections no matter how tangential – so let me now state that I had nothing to do with the FSA report on nutrition which was published last week and everything that follows is my own personal view – not representing the FSA or Breast Cancer Campaign.

The review clearly states: This systematic review of the available published literature was designed to seek to determine the size and relevance to health of any differences in content of nutrients and other substances in organically and conventionally produced crops and livestock products. This review does not address contaminant content (such as herbicide, pesticide and fungicide residues) of organically and conventionally produced foodstuffs or the environmental impacts of organic and conventional agricultural practices.

It then goes on to say: No evidence of a difference in content of nutrients and other substances between organically and conventionally produced crops and livestock products was detected for the majority of nutrients assessed in this review suggesting that organically and conventionally produced crops and livestock products are broadly comparable in their nutrient content.

Ref: http://www.food.gov.uk/news/newsarchive/2009/jul/organic

There is a key phrase here – “broadly comparable in their nutrient content”. That’s it – that’s all – but given the outpouring from the press, the Soil Association and anyone with an interest in organic food, you would never have believed it. Much of the focus was on what the report didn’t say or even attempt to say. All the report states is that whether or not you eat organic food you will receive roughly the same nutrients.

The press was full of all the things that the report didn’t say – they looked at the research, they eliminated the research which was not well done, they didn’t do new research, they reviewed what was there. If you believe that organic food is the only way forward nutritionally (we are not discussing the environment, animal husbandry or anything else here) then commission well constructed peer reviewed research and let’s see the results.

I actually don’t care either way personally – the FSA has a duty to make sure that food is safe to eat (gross simplification I know), and I buy an organic box every week because I like the idea that independent farmers are supplying food that, on the whole, tastes better without having to ensure that every apple is exactly the same size. I can tell from the condition of the soil on the carrots that they have just been picked and I can wash them the way I want to. I still buy stuff from the supermarket but I don’t do any of this because of nutrition.

Thank goodness for Ben Goldacre (Bad Science in the Guardian and online). Ben is prepared to plough through the 200 odd pages of the FSA research, understand it and determine whether it is good research or not. He has been through the paper and also the negative media outpouring that followed and says: The Soil Association’s response has been swift, receiving prominent and blanket right of reply: this is testament to the lobbying power of this £2bn (organic food) industry, and the cultural values of people who work in the media. I don’t care about organic food. I am interested in bad arguments. Thank you Ben – please read http://www.badscience.net/.

Last year one of our researchers published some very exciting results. We sent out a press release which excited one of the journalists on a national daily so much that s/he recommended to the health editor by email that it be a major news story. The editor replied to the journalist’s email and mistakenly copied us in as follows:

“You’ve read a press release! A very complicated press release about drugs you have never heard of. You don’t even know what the study results are. Honestly (name deleted), just at least wait until we know what the paper says, basing a splash on a press release is a bit premature!”

Wish that all editors were as meticulous! As it happens the story did hit the front pages so instinct was right but backed by evidence.

Technology and the human factor

There we were, most of our staff crammed together in our largest meeting room for a presentation by one of the scientists whose research we support. The computer was fired up, the projector was on and the computer switched itself off. We can sequence the human genome but PowerPoint gets us every time. So everything was set up again and again the same problem – third time I went in search of our IT guru but sensible member of staff said that it looked like someone kicked the plug.......... and so it was. Human intervention removed we were ready to go.

Our mission is to beat breast cancer through supporting research and that goes beyond the research and also beyond publication in prestigious scientific journals so that other scientists can build on the work. It also extends to bringing that knowledge to the public – they give us 100 per cent of the money that supports the research so they are very much entitled to know how effective it is. Our team here is part of that public so they go along to research projects and from time to time the scientists come here to talk about what they are doing.

Survival is not enough

Over the past thirty years the number of women surviving breast cancer for ten years has increased by more than a third and many of those treated today could expect to survive longer than that. So thirty years ago the thought that the treatment would save your life but you might end up with debilitating enduring side effects years later just wasn’t much of an issue. It is now.

Dr Paul Symonds came from the University of Leicester to talk to us about the research that he and Dr George Tanteles are doing. The background is that on diagnosis of breast cancer a patient may be offered several forms of treatment including radiotherapy; in fact the majority of breast cancer patients receive this form of treatment which is used to destroy any breast cancer cells left behind after surgery and reduce the risk of local recurrence.

Radiotherapy is a very effective treatment for breast cancer but a small percentage of patients develop unpleasant side effects – sometimes well after treatment has finished and these effects are life-long. These can range from chronic pain to heart disease and at the moment we have no way of knowing which patients will be affected.

Paul and George believe that they have identified a genetic marker which could lead to a test to identify the risk of radiation side effects which then could play a part in determining treatment. If successful this could be a saliva or blood test and would be quite cheap to do. We are still a few years away from this but it is a step closer to surviving well – not just surviving.

If you would like to read the full paper on this study, it can be found on the British Journal of Cancer website (you have to subscribe to read it, or contact me).

The last ten days...

Sorry it’s all been a bit quiet in the last ten days or so. A busy time at work with nothing very much to report and a batch of outside meetings followed by a few days in Switzerland staying with friends in Lausanne. A lovely break, very relaxing but Switzerland is very expensive. Fortunately, they have a flat there so we were able to eat in quite a lot. As always seems to happen on holiday - you leave your holiday place in brilliant sunshine and come back home to rain.

This was my first holiday with my new bright shiny netbook. I am a bit of a news junkie and even more of a newspaper junkie, with only the prohibitive cost of British newspapers abroad stopping me from buying them every day. However, I realised two things on this holiday: not only could I get my news fix from the internet on my new toy but I am starting to get information from blogs rather than from newspapers.

Take the swine flu pandemic – I wish someone would. The newspaper and TV headlines were relentlessly depressing with lurid headlines all signifying the end is nigh. Companies stock-piling Tamiflu for employees and families, people buying – possibly counterfeit – drugs over the internet and call centres being set up to man the phones for the hundreds of thousands who will succumb. We have had a couple of suspected cases in the office which isn’t much fun for those concerned, and it is a concern that there might be an upswing in incidence and we will be short-staffed. A couple of years ago we had an epidemic of whatever the lurgy was and had over a third of the staff off sick. It happens!

So I don’t want you to think that we are ignoring the practical consequences of this - I know no more about viral illnesses than any of you so please don’t think I am talking with any authority – but please read NHS Blog Doctor for some perspective.

P.S. My grandchildren in Switzerland are taught at school to sneeze into their elbows rather than their hands – this was long before swine flu – to avoid spreading germs. Me – I take vitamin C at the first sign of anything – there is absolutely no evidence at all that it has any effect but it makes quite a nice drink.

My new bright shiny thing

Waiting in a café to meet my opposite number from Breast Cancer Care for breakfast. We meet up regularly to bring each other up to date on our respective organisations and also discuss any activities we are collaborating on at the moment. We participated in their excellent work on secondary breast cancer* (we supported a research project at Southampton University in collaboration with them looking at exactly this issue) and were part of the task force which was set up to address the very serious issues related to the support given to women whose breast cancer has returned. Have a look at their website if this is something that you are concerned about.

However, the reason for writing right now is somewhat trivial compared to the importance of the work both our organisations do. Of course I am not writing – I am typing on my new bright shiny thing – a netbook. This is very small, very light, pretty cheap and can do everything a grown-up computer can do. I have resisted having a laptop/portable computer, my arms are not strong enough to lug it around and the very light ones are too expensive, but when I am out and about the netbook would be so useful to have. Not only could I log onto files on my computer rather than printing things out for every meeting, but I could also type up notes on the spot.

My world of work encompasses an era before we had a computer on every desk. That was only twenty odd years ago. The first personal computer was the IBM PC and a wondrous invention it was. When I worked in the City in the 1980s we bought the second generation personal computer in 1984 which was the IBM PC XT. The cost was close to £8,000 and it had a whopping 128 KB of memory and a floppy disk drive – remember them? (The geeks out there can go to wiki to see the technical specs). When I left the City in the late 1980s the computer I bought to use to work from home on had one megabyte of memory and, as the person who helped me set it up said, “you will never use that much in a million years….”.

The advances in computer technology have not only changed the way many of us work, it has enabled medical research to process information in a way which was not even dreamed about only ten or fifteen years ago. We don’t forget that however smart, the technology is a tool, a very powerful tool, but still just a tool. It doesn’t replace human creativity, ingenuity and the ability to ask not only “why?” but “why not”. That’s the bit Breast Cancer Campaign supports.


*Secondary breast cancer occurs when breast cancer cells spread from the first, primary tumour in the breast to another distant part of your body via the bloodstream or lymphatic system.

To screen or not to screen

Breast screening is in the news again: at the same time as we see that deaths from breast cancer have reached the lowest point for nearly 30 years we also see a report which says that some women are being treated needlessly for breast cancer and this is due to over-diagnosis – largely due to the screening programme.

Some of the facts are simple but the consequences are less so. Over-diagnosis happens when a cancer grows so slowly or it stays the same or disappears so that the patient dies of other causes. As it is not possible to distinguish between dangerous and harmless breast cancers, treatment is offered for all detected cancers.

One of these is a condition called Ductal Carcinoma in Situ (DCIS). This is what is loosely referred to a pre-cancerous condition and until the screening programme it was often not diagnosed until it had spread or produced symptoms. It is clear that there are women with DCIS which will not progress, they will not have symptoms and they will die with it rather than of it. However, there are also women (we believe around 30–50 per cent) whose DCIS will progress into invasive breast cancer and could spread beyond the breast and, if untreated, lead to death.

For me it is quite simple: we cannot identify who falls into which group. So, for me personally, it is Russian roulette - do you spin the barrel and take a chance that you will be one of the lucky ones or do you go through the misery of treatment in case you are one of the unlucky ones.

DCIS is a complex area and Breast Cancer Campaign is funding research looking trying to understand why some cases of DCIS turn into invasive breast cancer and others don’t so that we can avoid unnecessary treatment in the future.

The screening programme is not a perfect tool but it is what we have until our research gives us something better and as long as women have the information to understand the risks and benefits it should be up to them to make their choice. I have been part of the screening programme for some time and I have never missed an appointment. I was also given the opportunity to take part in a clinical trial which is testing alternative forms of screening for ovarian cancer and I am doing that and – this may be too much information - have just received my letter to take part in the bowel cancer screening programme and will be doing that as well.