It can also be known as hereditary non-polyposis colorectal cancer (HNPCC), and it is a type of inherited cancer syndrome linked to a genetic predisposition to different cancer types.

What this means to you and me is that people with LS have a higher risk of certain types of cancer.

What it means to me is that I am one of these people. I was ill for a whole year, with every red flag symptom and was finally diagnosed with bowel cancer aged 29yrs. A bowel resection operation and course of chemotherapy meant I wrote off a year of my life just pushing myself to get through treatment and get healthy again. Diagnosis of LS followed genetic testing of my tumour.

There is a significant increased risk of developing bowel cancer with LS. For any part of the bowel which may remain after a surgery (remember I only had part of mine removed). People with LS are more likely to experience multiple bowel cancers. Options are not to be taken lightly.

There is also an increased risk of developing other types of cancers, such as endo, ovarian, stomach, breast, pancreatic, liver, kidney and urinal tract. Quite a list eh?! Pretty scary when you over think it.

It is estimated that 1 in 300 people may be carriers of an alteration in a gene associated with LS. That’s one person on every average flight! That’s 300 people at a packed out match at Wembley! Over 5,000 people in Kent!

There are no symptoms, so we really want to shout about being aware of YOUR family history. If you have experienced diagnoses of colorectal and/or endometrial cancer in multiple relatives on the same side of a family (Particularly so if these cancers were diagnosed at a young age) you should mention this to your GP, BE CONCIOUS but equally don’t be alarmed.

In addition, people with LS are also at an increased risk of developing multiple types of cancers during their lifetime. Therefore diagnosis and screening are incredibly important. No one likes the word cancer, but no one likes the words “terminal” or “palliative” so as scary as things may feel, if you feel you should investigate, do, forewarned is forearmed.

NICE have published guidelines that everyone diagnosed with bowel cancer are tested for LS. This would mean that both patients and relatives who have LS can be placed in a regular screening programme, which reduces the risk of dying from bowel cancer by 72%!

NICE estimate that over 300 bowel cancers could be prevented each year from testing everyone for Lynch Syndrome. Yet so many hospitals are not doing this. The cost of a test v treatment is massive, it IS worth it.

Bowel Cancer UK is asking UK Health Ministers to take responsibilty to identify and manage LS and save lives. So am I.

My second bowel cancer diagnosis 12 years on means I’m laying on a hospital ward right now, in pain, shattered and an emotional mess. To avoid any more bowel cancers my large bowel has been removed and I have been given a permenant ilieostomy. During the operation they also removed other large risk factors so my womb and ovaries are gone. Four days in HDU because this was massive surgery, that my body struggled with. I hurt, I feel ugly and it is a lot to come to terms with.

BUT knowledge is power and I have been handed a golden key to a future with a lot less risk of cancer.

Please check out your family history and please be aware of this disease. It may one day save someone’s life.

You can sign the petition and become a campaign supporter and Bowel cancer UK will send you updates.