Our Cry wolf Campaign is not about the treatment Breast Cancer patients get nor is it about the care they receive, their treatment is first class and the nurses have a real concern.

By the end of this year our breast cancer treatment will be second to none. They are going to bring the screening age down from 50 to 47 and this whole operation is called the Cancer reform strategy and will affect every cancer patient and every cancer treatment.This is what it says

“Chapter 4 of the Cancer Reform Strategy, we set out our commitment that, from the end of 2009, all patients with breast symptoms urgently referred by their GP to a specialist should be seen within 14 days, whether or not cancer is suspected.”

But if you read the new guide lines issued by the National Institute for Health and Clinical Excellence  (NICE) all is not what it seems. If you are over 40 and close to the main stream it is ideal but under 30 and this is what NICE say.

“Breast cancer in women aged younger than 30 years is rare, but does occur. Benign lumps (for example, fibroadenoma) are common, however, and a policy of referring these women urgently would not be appropriate; instead, non-urgent referral should be considered. However, in women aged younger than 30 years:

• with a lump that enlarges, or
• with a lump that has other features associated with cancer (fixed and hard), or
• in whom there are other reasons for concern such as family history

an urgent referral should be made.”

Our Cry wolf Campaign is about opening the door to that treatment and care for women under the age of 30 who have breast cancer. At the moment the only person who can do that is the GP and so many of them are getting it wrong. We want  NICE to get rid of the above guide lines and treat every woman the same no matter what age they are.

If you are under 30 and go to your GP with a breast lump concern he will make a clinical Judgement and part of the judgement will be your age. He will also look at the NICE guidelines but the younger you are the more biased they are towards you not having breast cancer.

Every year about 2000 women in there twenties and thirties will get breast cancer.

  If you are a younger woman the NICE guidelines now seems to tells your GP to say "If your lump gets any bigger come back." Your GP might see 1 woman a year who has breast cancer and the chances are that woman will be over 50. If you are under 30 that clinical Judgement is no more than a guess and they are making too many bad guess and too many young women are being misdiagnosed.

Breast Cancer has never killed anyone, it the secondary cancers that do the harm, thats why our campaign is so important . We would like to see every women with a breast lump concern get it seen by a specialist and have petitioned the government,

 “ That the Government ensures that all the guess work is taking out of the initial breast cancer diagnosis and that every woman with a breast lump concern, no matter what her age will be given a mammogram or equivalent within 30 days of  seeing a Doctor.”

We now know this will never work because of the pressures it will put on the system.
      You cant always get what you want but we will be happy to get what we need. We still need to take the guess work away from our GPs and give it to someone who specializes in breast cancer.  We need a specialist nurse at every breast clinic in the country that can be approached and seen by anyone with a breast lump concern, without going to their GP irrelevant of age and without having to be referred.  If they could catch more women at the pre-cancerous stage then those women would have a better quality of life and be saved the nightmares of the treatment. They would also be saving the NHS a great deal of money.

 You can find out more at www.smallcarsbighearts.co.uk or sign our petition at http://petitions.number10.gov.uk/Crywolf/ or join our FaceBook Group.

Our Cry Wolf campaign is about Breast Cancer and young women, all we want is a better front line in the fight against breast cancer for younger woman. We want the GPs to stop guessing when it comes to breast lumps. To many young woman are being misdiagnosed  just because they are so far away from the main stream and they are losing out on the benefits of an early diagnoses.

But Breast Cancer is still the most commonly diagnosed cancer in women under 35

Here is a comment about our campaign from Ann Keen MP Parliamentary Under Secretary of State.

“Chapter 4 of the Cancer Reform Strategy, we set out our commitment that, from the end of 2009, all patients with breast symptoms urgently referred by their GP to a specialist should be seen within 14 days, whether or not cancer is suspected.”

But if you read the new guide lines issued by the National Institute for Health and Clinical Excellence  (NICE) all is not what it seems. If you are over 40 and close to the main stream it is ideal but under 40 and this is what NICE say.

“Breast cancer in women aged younger than 30 years is rare, but does occur. Benign lumps (for example, fibroadenoma) are common, however, and a policy of referring these women urgently would not be appropriate; instead, non-urgent referral should be considered. However, in women aged younger than 30 years:

• with a lump that enlarges, or
• with a lump that has other features associated with cancer (fixed and hard), or
• in whom there are other reasons for concern such as family history

an urgent referral should be made.”

Approximately 2,000 women in their twenties and thirties will be diagnosed with breast cancer every year.

Little has changed between the old guide lines and the new ones and they still expect the GPs to guess if a lump is benign or cancerous, using their clinical judgement of course but how many of them get it wrong. As they do not keep statistics on misdiagnosis or bad guesses no ones knows.

There is one other concern, if they are unsure about the lump all they have to say now is, come back if it gets bigger. If it does get bigger, then the young woman has lost the chance of an early diagnosis.

I wonder what most GPs would do if their 26 year old daughter came home with concerns over a breast lump, would they really be happy, with a guess. Even more important what would Ann Keen say, wait and see if it gets any bigger, I don’t think so.

We really do need a better front line against the fight against breast cancer in younger woman and we need to take all the guess work away from breast cancer diagnosis. But we do realise breast cancer maybe the most commonly diagnosed cancer in women under 35 but it is rare.  We just want to make sure everywomen no matter what age, gets the best possible chance of an early diagnosis.

You can find out more at www.smallcarsbighearts.co.uk or sign our petition at http://petitions.number10.gov.uk/Crywolf/ or join our FaceBook Group.

Every so often it is nice to know that I am not so stupid for starting something like this and as much as things have gone a bit quiet on the e-petition doesn't mean it has come to a stand still.

Tinker is going to play a big part in this campaign as I start to take her out on to the streets and get people to sign the the paper petition. She is also going to L2B and a few other shows. 

Geoffrey Cox, MP

My sincere thanks to everyone who has taken the time to sign our e-petition, but we also have a paper petition and if you would like to help collect signatures you can download our paper petition here.

Crywolf Petition

When our 25 year old twin daughters both had a breast removed, within 6 weeks of each other because of breast cancer, our world came to a stand still for 20 months. We realise what our daughters went through is very rare, the consultant even said we had more chance of winning the lottery twice, than both our twin daughters getting breast cancer at the same time.

As they travelled their journey side by side and sometimes hand in hand we saw the incredible difference in the quality of life between someone who had been misdiagnosed with breast cancer and someone with an early diagnosis.

It would seem the word misdiagnosis has turned into an acceptable term for a very bad guess when it comes to breast cancer. Both sisters had problems getting their GP to refer them to the breast clinic. From the e-mails we have received we know that our daughters are not the only women to be misdiagnosed but there are no statistics or figures but most important little is being done about it. Part of that problem is the further you are away from the main stream the more chance of your GP misdiagnosing the symptoms.

We realise GPs are not specialists but they are the main front line in the fight against breast cancer for women under 50 and all they really do is guess. The breast cancer consultants do not help when they send out letters about “inappropriate referrals".  We need the GPs to stop all the guess work and pass the patient on to someone who knows a lot more about the symptoms of breast cancer.

We need to tell more women what the real difference is between misdiagnosis and early diagnosis but most important we need to try and get the NHS to catch more women at the very earliest stages of the cancer.  So we started a campaign called Cry Wolf.

Cry Wolf is more than just another Breast Cancer awareness campaign for woman under 40 and their GP’s. We are trying to get the Government and the NHS to put more effort into the initial breast cancer diagnosis and to take all the guesswork away and we want consultants to stop using the words “inappropriate referrals"

Everyone agrees the earlier breast cancer is diagnosed the greater the chance it can be successfully treated and if you can catch it whist it is in it’s precancerous stage the quality of life for those people will also be greatly increased.

The problem is not just with the GP’s here is a excerpt from the NICE guidelines (National Institute for Health and Clinical Excellence) the governors of the NHS, they make the rules.

“Unfortunately though, in younger women it is more likely that breast cancer diagnosis will be delayed, simply because it is more unusual. If you do have a symptom that is listed as urgent, stick to your guns.”

This year another 45000 women will get breast cancer 9000 of those will be under the age of 50 and 3500 of those will be under 40 and NICE already admits it has a problem with diagnosing younger women.

When NICE say “stick to your guns” what they are really saying is “You’re on your own.” That’s not really good enough and how many women would have the nerve to keep going back and arguing with their GP and whist all this is going on that lump which might have been pre-cancerous could certainly be cancer by the end. We have to get that changed simply because if the National Institute for Health and Clinical Excellence is not bothered why should the Doctors. 

If the NHS put more effort on the front line it might catch more women, whist the cancer is still at a pre-cancerous cell stage. Then there would be no need for Radiotherapy, chemotherapy or any of the expensive drugs they use. The patient may have the lump removed or they could have a mastectomy, they might even take away a few lymph nodes. They will also have a few more tests but then they would join the queue for reconstruction. But most important because they only had pre-cancerous cells they will not be one of the 45,000 women who get breast cancer every year.  Maybe a better front line would even help in bring that total down.

The money the NHS saves on the treatment could go towards improving the front line and do away with all the guesswork and cut out so many misdiagnoses.

So we have e-petitioned the Prime Minister. It’s a start.

“We the undersigned petition the Prime Minister to ensure that all the guess work is taken out of the initial breast cancer diagnosis and that every woman with a breast lump concern, no matter what her age will be given a mammogram or the equivalent within 30 days of seeing a doctor.”

We know our campaign is right because of what our family has witnessed over the past 20 months and from what we have learnt. When our twin daughters both had a breast removed within 6 weeks of each other, we saw the unbelievable difference in the quality of life for someone who had been misdiagnosed over breast cancer and someone who had an early detection. If we are ever going to make a difference we need a better front line, we need to stop all the guesswork but most important we need to tell women that there really is a big difference between early diagnosis and misdiagnosis. When one of our daughters was finishing her herceptin the other was giving birth to a little girl, how different is that.

But please we could do with some help in getting our campaign known and hopefully more people to sign our e-petition.

If you’ve ever been affected get connected,
If you’ve ever worn a pink ribbon sign the petition
http://petitions.number10.gov.uk/Crywolf/

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