LS doesn’t cause any symptoms. But people with LS have an increased risk of developing bowel cancer, womb cancer and some other cancers.

However on lynch Syndrome awareness day, thought it makes sense to look at facts and how they relate to a real person. Me.

As Lynch syndrome is (usually*) an inherited condition there’s a 50:50 chance of passing on the condition to children.

Meet Luna.  Get it now?

*Usually is the key word. I’m a rare exception, self evolved X-Woman.

Lynch syndrome is a genetic condition that increases your lifetime risk of bowel cancer to up to 80%.

Well blow me down with a feather! Two diagnosis for me. Lucky, lucky, lucky!

It can be difficult to cope with knowing that you have LS, or that you are at risk of it. The uncertainty of not knowing whether you will develop cancer isn’t easy to deal with. 

Let’s just say in the first 6 months of LS diagnosis I probably earn’t shares in Jamesons.  Anxiety and fear became the norm.

The burden of dealing with this disease can be overwhelming.  There are many conflicting emotions about screenings and the risks.  Scheduling appointments and waiting for test results becomes physically draining, time consuming, and burdensome.

There is also the worry of “inflicting” this disease on others.  I’m lucky no one else in my family is positive for LS.

When Mr J and I started dating I made him sit down with a whole pile of paperwork about LS – technically I was asking him to opt in to the potential drama and heart ache down the line.  I needed him to know the whole risk about dating a Lynchie and give him a chance to walk.

If you know your risk of cancer is increased, you can have regular tests called screening

Moviprep… Some of you will have gagged at that word. 

If you have never experienced it, well it is the most foul tasting drink that you have to drink a huge amounts of to clear our before a colonoscopy.  It tastes of dirty ashtrays (IMO)  Mr J used to have to cheer me on to actually drink it.  He would also buy me baby botty wipes for the aftermath – that is love!  Still, once you know, you will be put under screening programmes which involve colonoscopies and vaginal scans on 12-24 month basis

Not just bowel cancer then? The risks are significantly increased for many other cancers including ovarian cancer, stomach cancer and womb cancer.

This is why Dr’s advised a hysterectomy. We went full on… Total Hysterectomy with Bilateral Salpingo-oophorectomy … AKA womb, ovaries, the whole shebang.  This was a decision that took years to make and we had to both be sure.

Surgical induced menopause followed, within days. Lucky Mr J!

This increased risk means people with Lynch syndrome are also more likely to develop bowel cancer at a much younger age – the average age of diagnosis is 45 years old

TICK. First diagnosis at 29. They estimate is had it for over 5 years. Since about 24 YEARS OLD!

– and they’re also at a higher risk of a recurrence.

*WAVES* second diagnosis 12 years later at 41 years old. Still “young” for what people believe to be an old person’s disease (it isn’t)

When early stage cancer is identified, particularly multiple times, some patients are advised to have prophylactic surgery to help with their mental well being.

The “present” my surgeon gave us was of survivorship and peace of mind.  We took drastic steps, but in an effort to avoid constant bowel & uterine surgeries. The burden of screening/treatment  would have been massive, with colonoscopies every 6 months and we would always live in fear. 

I hated what he was saying at the time he told me what the MDT had decided, I nearly threw up on his office floor.  We get that it was to allow us to live as normal life as possible and not always look over our shoulders.  Mr B is in fact a bit of a hero to both of us, despite the new hand “bag” he gave me.  

175,000 people are estimated to have Lynch syndrome in the UK, yet fewer than 5% are known

WE CAN CHANGE THIS. 

The National Institute for Health and Care Excellence (NICE) recommended last year that everyone in England who is diagnosed with bowel cancer should be tested for Lynch syndrome. The test costs the NHS around £200 per patient (compare this to the average treatment cost of bowel cancer sitting around the £25,000 – £30,000 mark).

I was, but only because of my age at 29. For every patient testing positive, their family lines can then be tested and we can work towards having more previvors and using screening plans to stop the advancement of bowel cancer (and expensive treatment plans) in people. My second diagnosis was caught early and I didn’t need a second course of chemotherapy. This made me VERY happy.

FOI findings last year showed that 7 NHS hospitals in Kent (88%) are not following the (NICE) guidelines to test all bowel cancer patients at the time of their diagnosis for Lynch syndrome.

 

Wait! What?! Only ONE hospital in Kent is doing this? Why…?  We’re working on campaigns to change this.

**Only 5% of those with Lynch syndrome know they have it.**

This means that 95% of people don’t have a scooby that they are at a high risk of a range of cancers and that they can benefit from screening programmes preventing diagnosis, especially late, and even death

If you are worried about your family history, talk to your GP. They may refer you for genetic testing. Also having LS is mentally challenging and knowing you are at increased risk of cancer, well, can be an absolute mind melt! But there are some good places of support available.

It’s not all bad though… lynch syndrome has taught me…