Lynch Syndrome Awareness Day

In March 2019, I had never heard of Lynch Syndrome. I was one of the 95% living life clueless that they have a genetic mutation that increases their risk of certain cancers. Now, three years later, I know and want to do my part spreading knowledge and March 22nd is Lynch Syndrome Awareness Day.

Picture courtesy of AliveAndKickn

Often families with the mutation have a history of cancer. In our family, there wasn’t, so the discovery came totally out of the blue.

Since it is an inherited mutation, my family needed to get tested first. My sister has also inherited it and we got it from our mom. Our brother escaped the mutation. Since both of my maternal grandparents passed away a few years ago and both of non-cancerous reasons, we don’t know which of them was a carrier.

My aunt and uncle also had the genetic test, and luckily their results were negative.

The only one who can now still pass it on in our family is my nephew. He can get the test when he turns eighteen. Until then, we’ll be praying that he doesn’t have it.

If you are new to the blog and hearing about Lynch Syndrome for the first time, you might like to read these posts that explain more about it and living with Lynch.

Lynch Syndrome – Living With Faulty Genes

How Does Lynch Syndrome Increase Cancer Risk

I have had nearly three years to get used to the idea that I have a gene that increases my risk of certain cancers.

Frankly, it sucks.

It’s not like I think about it every day all the time. Of course I don’t. It would drive me crazy. But it is at the back of my mind a lot of the time.

It’s on my mind when I’m writing the shopping list or fancy a fatty donut or a big bag of crisps. I think about it when I skip exercising or don’t get enough sleep. When in the past I would have dismissed most aches and pains, now I wonder if they are just harmless, passing things of signs of something else.

But having it at the back of my mind also reminds me to seize the day. It reminds me to make healthier choices and to look after myself better. It is because cancer and LS that I finally sent my book baby to some agents.

And most importantly with knowledge comes a better chance of survival.

People who know they have Lynch Syndrome have regular colonoscopies to detect colorectal cancer early. We can have our stool tested for bacteria that could indicate stomach cancer. We can opt to have a preventative hysterectomy like my sister Päivi did.

Knowing you have LS makes you more aware of anything unusual in your body. It can also speed up getting referred for further investigations.

Päivi recently had a weird sensation on her side, near the ribs she wanted to have checked out. Because of LS, or really it should be thanks to LS, she didn’t have the usual waiting time to get it checked out. She had a full-body MOT, and all is well.

We also need to remember that cancer genetics are advancing all the time. Cancer medication is getting more precise; immunotherapy and gene sequencing offer hope for the future.

This is not good news for LS people only, but for anyone diagnosed with cancer. According to Cancer Research UK, the cancer survival rate in the UK has doubled in the last 40 years.

I would like to encourage anyone with a family history of cancers linked to LS to speak to their doctor and to request genetic testing. Whilst learning you have LS is bloody tough, it can also save your life.

I’m not exaggerating. It is true. Knowledge is power, and early detection saves lives.

And for those of us living with Lynch, or other genetic mutations, let’s remember that we are more than our genes. Lynch Syndrome doesn’t define us.

When diagnosed with something like LS, we have a choice of how to react.

I am choosing to use it for empowerment. I am choosing to use it as a reminder to take action and live life to the fullest. Life is no longer something that happens to me.

I am in charge and it is my right, and duty, to live my best life.

Until next time, and as always, thank you for being here.

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