Bowel Cancer UK and clinical experts are urging all hospitals across the UK to implement Lynch syndrome testing at diagnosis for everyone with bowel cancer under the age of 50. Lynch syndrome is an inherited condition which causes over 1,000 cases of bowel cancer in the UK every year, many of them in people under the age of 50. However, fewer than 5% of people with Lynch syndrome in the UK have been diagnosed.
Testing everyone with bowel cancer under the age of 50 at diagnosis for Lynch syndrome will help identify family members who may carry Lynch syndrome and be at risk of bowel cancer. It has been shown to be cost effective for the NHS, and is recommended by the Royal College of Pathologists and British Society of Gastroenterologists. It is also a key recommendation in our Never Too Young campaign.
People with Lynch syndrome should then access regular surveillance screening, which can detect bowel cancer in the early stages and has been shown to reduce mortaility from bowel cancer by 72%.
Despite this, testing and surveillance screening are patchy across the UK. A letter in the Daily Telegraph (13 November 2014) from eight leading clinical experts supports our call for all hospitals to implement Lynch syndrome testing at diagnosis for people with bowel cancer under the age of 50.
The letter and signatories are as follows:
There are more than 1,000 cases of bowel cancer a year that are attributable to Lynch syndrome (LS), many under the age of 50. LS is an inherited condition that predisposes individuals to bowel and other cancers, with a lifetime risk of around 70 per cent. Yet in the UK we have identified fewer than 5 per cent of families with LS. The family of Stephen Sutton, who was diagnosed with bowel cancer and whose father has LS, was one of them. It is a consistently under-recognised, under-diagnosed and inadequately treated condition.
Both the Royal College of Pathologists and the British Society of Gastroenterology recommend testing everyone with bowel cancer under the age of 50 at diagnosis to help us to identify family members who may carry LS and be at risk of bowel cancer. Yet testing is patchy. We urge all hospitals across the UK to implement this guidance.
This testing would mean people at risk could access surveillance programmes for regular colonoscopies, helping detecting bowel cancer early but also preventing it.
Patient groups such as Bowel Cancer UK are in support. A recent NHS study found that LS testing at diagnosis for everyone under 50 with bowel cancer would be cost effective enough to have been approved by NICE. The evidence is overwhelming. We must end this postcode lottery.
Dr Suzy Lishman, President, The Royal College of Pathologists
Professor Malcolm Dunlop MD FRCS FMedSci FRSE, Colon Cancer Genetics Group and Academic Coloproctology, Head of Colon Cancer Genetics, Institute of Genetics & Molecular Medicine
Professor D Gareth Evans MD FRCP, Professor of Clinical Genetics and Cancer Epidemiology and Consultant Geneticist, University of Manchester
Commenting on the letter from clinical experts, Deborah Alsina, CEO of Bowel Cancer UK, said:
“The Royal College of Pathologists recently produced best practice guidelines recommending everyone with bowel cancer under the age of 50 should be tested for Lynch syndrome at diagnosis. Speedy implementation is vital as testing is currently patchy at best and if people are tested at all, it is often after treatment ends. Yet a diagnosis of Lynch syndrome can affect treatment decisions. We are therefore calling for all UK hospitals to implement this guidance swiftly.”
“This will also help to identify the risk to other family members who may also carry Lynch syndrome and who may be at higher risk of developing bowel cancer. Once identified, people at risk, including those diagnosed who have a greater chance of recurring or developing another linked cancer, should have access to surveillance programmes including regular colonoscopies. This will help to ensure bowel cancer is either prevented or detected early.”
Bowel Cancer UK will be writing to all Clinical Commissioning Groups and Health Trusts in the UK asking them if they have implemented systematic Lynch syndrome testing, and we will report back on the responses. In the meantime, please share our infographic on the subject on social media to help raise awareness of the issue.
The day my wife was diagnosed with malignant pleural mesothelioma is one that I will never forget. Just three months earlier in August of 2005, we had celebrated the birth of our first daughter, a little angel we named Lily. Unfortunately, just before Thanksgiving that year we received the news that my wife had a rare and extremely deadly form of cancer.
All of a sudden, I was the caregiver for a person with cancer. My role started before we even left the doctor’s office with the diagnosis. The doctor gave us three options for Heather’s treatment. We could seek treatment at the local hospital, head to a regional hospital or go to a hospital in Boston with one of the leading mesothelioma specialists in the world. My wife looked at me with a pleading look to save her in her eyes, and I instantly said we have to get to that specialist in Boston.
The next few months soon overwhelmed me. I could now only work my formerly full-time job part-time, but I was busier than I had ever been before. In addition to taking care of Heather, I had to take care of our baby girl as well.
There were times that this role as the caregiver and rock of the family completely overwhelmed me. I would suddenly find myself feeling broken down, overwhelmed and helpless. However, I always managed to pull myself together, and I never let Heather see me when I hit rock bottom. I knew I needed to be strong when I was with her so that she could lean on me for support during her difficult battle with cancer.
It was amazing to see how many of our family and friends reached out to us while Heather was getting treated for mesothelioma. People gave us time, money and kind words, and all of this help gave us the strength to keep fighting on. Anyone that faces a similar situation should take advantage of any help that people around them are willing to give, and don’t be afraid to ask for it. This job is hard enough as it is; you shouldn’t have to go through it alone.
Being a caregiver for a cancer patient is something that is incredibly challenging. There are a lot of dark moments and chaos where you don’t know if you will ever see the light at the end of the tunnel. The most important thing is to never, ever give up hope. Always keep fighting for a better tomorrow.
After radiation treatments, chemotherapy and surgery, Heather is now completely free from cancer. It has been over seven years since her terrifying diagnosis, and she remains healthy and happy to this day. Now, we hope that by sharing some of our experiences, we can help inspire other currently going through their own battle with cancer today.
Read more from Cameron Von St James’ blog here
PATIENTS who attend bowel screening are more likely to be diagnosed with bowel cancer at an early stage – when there is a better chance of survival – than those who wait until they have symptoms of the disease.
These are the findings of new data presented at the annual National Cancer Intelligence Network (NCIN) conference in Birmingham.
Researchers say the study shows that the NHS Bowel Cancer Screening Programme is working towards its aim to reduce deaths from bowel cancer.
Researchers compared the stage at diagnosis of bowel cancers picked up through screening and those diagnosed from symptoms.
The results showed that 18.5 per cent of bowel cancers detected through screening were at the earliest stages compared with 9.4 per cent of cancers diagnosed through symptomatic routes.**
In contrast, late stage tumours were more common in patients diagnosed through symptomatic routes compared with those diagnosed through screening.***
Sam Johnson, lead researcher based at the West Midlands Cancer Intelligence Unit, said: “When bowel cancer is diagnosed at an earlier stage, it’s easier to treat, has a lower chance of coming back and better survival rates.
“Our research shows that screening can play an important role in improving bowel cancer survival by picking up cancers at an earlier stage.”
Bowel cancer is the third most common cancer in the UK – around 40,000 people are diagnosed with the disease each year.
Researchers said that once the NHS Bowel Cancer Screening Programme has been established for several more years, and has been rolled out completely to people aged 60 – 74 years old, they would expect to see fewer late stage cancers.
Chris Carrigan, head of the NCIN, said: “When bowel cancer is found at the earliest stage, there is an excellent chance of survival, with more than 90 per cent of people surviving the disease at least five years.
“Compared with breast and cervical cancers, bowel cancer tends to have a lower five-year survival rate.
“This study highlights the potential improvements we can make through encouraging more people to take-up their screening invitation so the disease is diagnosed earlier.”
Mom, Dad, Let’s Talk about Colon Cancer
By Durado Brooks, MD
How often do you think a family conversation about cancer occurs? The truth is, not nearly often enough.
Colorectal cancer (often called simply “colon cancer”) is cancer that develops in the colon or the rectum, and it’s the third most common cancer in the U.S. While most people diagnosed with colon cancer do not have a family history the disease, people who have this cancer in their family have a significantly higher chance of being diagnosed. The good news is that colon cancer is one of the most preventable cancers, and this prevention can work even for people who are at high risk of the disease.
Colon cancer is preventable because it usually starts as a non-cancerous growth called a polyp. Not all polyps will progress to cancer, but for those that do the transformation usually takes a number of years. Cancer can be prevented by finding and removing these polyps with colon cancer screening tests during this transition period.
People who have a history of colon cancer or polyps in a close family member (parent, sibling, or child) may have twice the risk of developing the disease compared to those with no family history. This is especially true if cancer appears in the relative before age 60. If there are multiple family members with colon cancer, the risk may be even higher.
Polyp detection and removal is best accomplished by regular screening – recommended to start at age 50 for people at average risk for developing colon cancer. However, screening recommendations may be quite different for those with an affected relative. That’s why it’s so important to know your family history. Simply knowing that a relative had “cancer” is not sufficient; you need to know details:
Where did the cancer start? Cancer of the colon is very different than cancer that starts in the stomach.
How old was the relative was when cancer was diagnosed? Colon cancer diagnosed in an 80- year-old grandmother may not imply that the family is at higher risk, particularly if this is the only case in the family.
Family history is an important predictor of many cancers (colon, breast, prostate), as well as other diseases (diabetes, hypertension, heart disease). Many people don’t appreciate the increased risk associated with a family history of these diseases, but this knowledge could be life-saving for you or for someone you love. The American Cancer Society and the National Colorectal Cancer Roundtable have developed FamilyPLZ.org to spark these discussions. FamilyPLZ provides tips, tools, and resources to educate the public on the importance of family health history, help people gather this critical information, and share it within their family and with their doctors.
So while these are not easy conversations, they are definitely worth having.
Dr. Brooks is director of prostate and colorectal cancers for the American Cancer Society.