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New Familial Cancer Clinic at Chelsea & Westminster Hospital


We are pleased to announce a new service at Chelsea and Westminster Hospital.  As per the long established service at West Middlesex University Hospital this clinic will provide genetic testing, surveillance, counselling and lifestyle advice for people at hereditary risk of bowel and other cancers.

 

The service is supported by Natalie Ellory Genetic Counsellor and others  from the North West Thames Genetics service.  We had our first clinic this week which went very well.

 

If you are interested in more information please email bowelcancer@chelwest.nhs.uk

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All cancer patients should have their DNA tested to save lives, Chief Medical Officer says


Urgent improvements needed to diagnose and manage Lynch syndrome | The BMJ


http://www.bmj.com/content/356/bmj.j1388

The new NICE guideline for Lynch syndrome testing explained · Bowel Cancer UK


https://www.bowelcanceruk.org.uk/media-centre/blog/the-new-nice-guideline-for-lynch-syndrome-testing-explained/

Sign the Lynch Syndrome petition now!


Bowel Cancer UK

Please take a moment to sign

Here’s the link to the petition

https://www.bowelcanceruk.org.uk/campaigning/take-action/

 

Caroline’s story

“Three generations of my family were devastated by cancer because of Lynch syndrome – my grandma, my mum, auntie and two uncles. I was also diagnosed with bowel cancer.

Because of my family history I should have been tested for Lynch syndrome sooner and my bowel cancer might have been prevented.

The silver lining is that now I know about the condition, I have a better chance of making sure my children don’t have to go through what I went through.” Read Caroline’s story in full

What’s the problem?

Generations of families like Caroline’s are being devastated by cancer because of an inherited, genetic condition called Lynch syndrome that dramatically increases the risk of cancer.

There are an estimated 175,000 people in the UK that share Caroline’s condition – but hardly any of them know they have it because people aren’t being tested. It’s vital they’re identified, so they can be regularly monitored to reduce their chance of dying from bowel cancer.

But our new findings reveal a worrying picture of delayed diagnosis, poor monitoring and unacceptable waiting times. A lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems.

The buck must stop with the UK’s health ministers – call on them to stop cancer devastating families like Caroline’s.

What needs to happen?

We’re calling on UK Health Ministers to urgently step in and take responsibility for improving the identification and management of Lynch syndrome by:

  • Developing a national registry of people with Lynch syndrome to improve our understanding of the condition.
  • Establishing a national surveillance programme to improve access to regular colonoscopy.
  • Developing comprehensive guidelines that set out how people with Lynch syndrome should be managed.

– See more at: https://www.bowelcanceruk.org.uk/campaigning/take-action/#sthash.NLzeRz5F.dpuf

Every new colorectal cancer to be tested for Lynch Syndrome -from NICE


Great news, NICE – that’s the organisation that provides clinical guidance to the NHS – has recommended that everyone diagnosed with bowel cancer should be tested for Lynch syndrome. It’s a genetic condition that increases the risk of cancer by up to 80%.
The recommendation will go a long way to addressing the problem of identifying tens of thousands of people who don’t know they have Lynch syndrome and can’t take steps to reduce their risk of cancer.
The campaign’s working but we can’t stop here, urgent improvements are necessary to ensure that all hospitals are testing and that people with Lynch syndrome get the right care.
Can you take two minutes to urge your MP to take action?
1) Just add your postcode here to contact your MP.
2) Then download and use our template letter to write your email.
If you get a response from your MP, please forward it to us at campaigns@bowelcanceruk.org.uk
Thanks for helping to make a difference.
Sam
Campaigns Team
P.s. Our petition to improve services for people with Lynch syndrome is still live in case you know others who’d like to sign – we just passed 2000 signatures.  Click here if you would like to sign up to this petition!

 

Invite: Lynch Syndrome UK Charity Visit 12th January


The charity @LynchSyndromeUK are visiting West Middlesex University Hospital next Thursday to speak to a group of GP trainees

http://www.lynch-syndrome-uk.org/

Please let us know if you or your family would like to meet members of the charity including others with Lynch Syndrome in OPD4 at 3pm

Email: bowelcancer@chelwest.nhs.uk

Thanks

Act now to STOP genetic condition devastating families with cancer


Sign our petition now by following this link

Caroline’s story

“Three generations of my family were devastated by cancer because of Lynch syndrome – my grandma, my mum, auntie and two uncles. I was also diagnosed with bowel cancer.

Because of my family history I should have been tested for Lynch syndrome sooner and my bowel cancer might have been prevented.

The silver lining is that now I know about the condition, I have a better chance of making sure my children don’t have to go through what I went through.” Read Caroline’s story in full

 

What’s the problem?

Generations of families like Caroline’s are being devastated by cancer because of an inherited, genetic condition called Lynch syndrome that dramatically increases the risk of cancer.

There are an estimated 175,000 people in the UK that share Caroline’s condition – but hardly any of them know they have it because people aren’t being tested. It’s vital they’re identified, so they can be regularly monitored to reduce their chance of dying from bowel cancer.

But our new findings reveal a worrying picture of delayed diagnosis, poor monitoring and unacceptable waiting times. A lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems.

The buck must stop with the UK’s health ministers – call on them to stop cancer devastating families like Caroline’s.

What needs to happen?

We’re calling on UK Health Ministers to urgently step in and take responsibility for improving the identification and management of Lynch syndrome by:

  • Developing a national registry of people with Lynch syndrome to improve our understanding of the condition.
  • Establishing a national surveillance programme to improve access to regular colonoscopy.
  • Developing comprehensive guidelines that set out how people with Lynch syndrome should be managed.

Find out more about our new findings

– See more at: https://www.bowelcanceruk.org.uk/campaigning/take-action/#sthash.bswfkvXw.dpuf

Testing for Lynch syndrome: an interview with Kevin Monahan


Lynch syndrome is an inherited condition which causes about 1,100 cases of bowel cancer and 1,000 other cancers annually in the UK. It is caused by a fault in the mismatch repair gene (MMR) which usually works to prevent cancer.

Source: Testing for Lynch syndrome: an interview with Kevin Monahan

Test everyone with bowel cancer for Lynch syndrome, NICE urges


Anyone diagnosed with bowel cancer should be tested for the inherited genetic condition Lynch syndrome, recommends the National Institute for Health and Care Excellence (NICE) in draft guidance issued today.  We have worked with NICE to develop these new guidelines.

Lynch syndrome is the most common cause of hereditary bowel cancer and those affected run an increased risk of developing womb, ovarian and stomach cancer, among others.

Lynch syndrome accounts for approximately 3.3% (1 in 30) of bowel tumours, and is estimated to lead to over 1,100 colorectal cancers a year in the UK. An estimated 175,000 people in the UK have the syndrome, a large proportion of whom will be unaware that they have it.

Microsatellite instability (MSI) testing or immunohistochemistry should be used to detect abnormalities that might indicate the presence of the syndrome, recommends NICE.

If the result indicates abnormalities, further tests should be carried out to confirm the diagnosis. Diagnosing Lynch syndrome may also help guide choice of treatment for bowel cancer says NICE.

Testing everyone with bowel cancer will increase detection of the syndrome and identify families who could benefit from genetic testing for the condition. This could lead to closer monitoring and consequently better outcomes through earlier diagnosis and treatment, says NICE.

“While these tests have been available for a while, the committee heard that there is currently wide variation in the provision of testing for Lynch syndrome and other inherited colorectal cancers,” commented Professor Carole Longson, director of the centre for health technology assessment at NICE.

People with the syndrome who develop bowel cancer generally do so between the ages of 40-50 or younger.

However, said Professor Longson: “It is estimated by Bowel Cancer UK that only 50% of centres provide tests to assess the risk of Lynch syndrome in people diagnosed with colorectal cancer under the age of 50.”

She added: “The committee concluded that using these tests to assess the risk of Lynch syndrome in all patients diagnosed with colorectal cancer could have substantial benefits for patients and their families.”

Deborah Alsina, Chief Executive, Bowel Cancer UK, agreed: “We hear every day how generations have been affected by cancer because of this genetic condition. By testing everyone diagnosed with colorectal cancer we can identify more people who have [it] and ensure they receive regular colonoscopy, which can reduce their chance of dying from bowel cancer by up to 72%.”

The consultation on the draft guidance runs until 11 November 2016.

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