Surviving Even When the Odds Are Not on Your Side
Since my womb cancer diagnosis in March 2019, I have been a member of the cancer club. It is a club nobody wants to be a part of and I would gladly hand back my membership, but that is not possible. Once you have been diagnosed, you are a lifetime member. Even after the all clear, the fear of IT coming back lingers especially when you have inherited faulty genetics that puts you on a higher risk factor.
Within a few short months, that frankly passed in a total blur, I was not only diagnosed with stage 3C2 womb cancer but also learnt I had Lynch syndrome. Lynch syndrome increases the carrier’s risk of certain cancers, including womb and colorectal cancers. It is an inherited genetic mutation and often families with the syndrome have a history of above mentioned cancers.
In my case, there were no warning signs within the family. Even the doctor from the genetics team thought it was unlikely I had the syndrome when she checked my family history, but I could not argue the results and simply have faulty genes. In a nutshell, people with Lynch Syndrome lack certain genes, in my case MSH2 and MSH6 that would normally make protein, which helps to identify errors in DNA. Without these genes, the errors go unidentified and can develop into cancer.
But I’d rather her be honest with me even if her words didn’t help with the paranoia all cancer survivors feel.
I’m still processing what it means to have a faulty gene that puts me at an increased risk of cancer. My oncologist told me that given my young age (I was 42 when diagnosed) and the Lynch syndrome, I’m likely to get cancer again. Brutal. But I’d rather her be honest with me even if her words didn’t help with the paranoia all cancer survivors feel.
If I have dodgy guts one day, I wonder if that’s a sign of cancer in the colon or my stomach. An itchy spot on my skin makes me think of skin cancer. I cover my skin in factor 50 sun cream even on the cloudiest of days. I question every unfamiliar ache and pain.
But it is better to know and be prepared.
Knowing that I carry the genetic mutation, means I will speak to my doctor about my concerns. Something I didn’t do with my womb cancer symptoms. I ignored the changes to my periods, dismissing them as part of aging. It wasn’t until my periods got very painful and long with bleeding in between that I went to see my doctor. I was expecting she would simply give me some pills or the coil and that would be the end.
Luckily, she didn’t do that. She sent me to the gynecologist. And I am so grateful she did. Otherwise, I probably would not be here right now writing this. The cancer had already spread to some nearby lymph nodes in the abdomen by the time I was diagnosed.
I will never make the mistake of ignoring potential symptoms again.
I will never make the mistake of ignoring potential symptoms again. Even if it means I will become a giant pain in the arse for my doctor, I will seek her advice if I have any concerns. However small.
Knowing I carry the gene also means my oncological team will monitor me more closely. For example, I face a lifetime of colonoscopies. Though I am not looking forward to them, going through 18-monthly checkups means that the doctors can detect any signs of cancer early. In fact, people who know they have Lynch syndrome and get regular check-ups, have a higher survival rate from colorectal cancers exactly for that reason. Knowledge is definitely power.
Another thing that sucks with the Lynch syndrome diagnosis is the inherited part. Turns out that my sister has inherited the mutation. We will have to wait until her son is 18 to find out if he has inherited it, too. Obviously praying that he hasn’t. My sister and I inherited the gene from our mum. Whether she got it from her mum or dad, we’ll never know as they have both passed away. And they both lived into their nineties and died of non-cancerous reasons.
I find this consoling, as it shows that carrying Lynch syndrome doesn’t mean you will definitely get cancer. Yes, your risks are higher, but as my family history shows, you can live a long and healthy cancer-free life even with faulty genes, and that is what I intend to do. The estimate is that 1 in 300 people could have Lynch syndrome, but 95% of people don’t know it. Why might that be? Because like me, there has been nothing in their family history that would have triggered alarm bells.
To me that shows that your lifestyle matters so much. When I look at my life before the cancer diagnosis, I ticked pretty much every box that increases your cancer risk. I smoked; I drank too much; I was overweight; I didn’t exercise; my diet was rubbish; most nights I didn’t get enough sleep and I was stressed to my eyeballs.
Cancer might have scared the shit out of me, and for a while, after the diagnosis, I thought of death. A lot. I planned my own funeral. I began to max out my credit cards - luckily I came to my senses before I had time to do too much damage.
But then something shifted in my brain. I wanted to live...I wanted to do all the things I had dreamt of but never got round to.
But then something shifted in my brain. I wanted to live. I wanted to see my niece and nephew grow up. I wanted to do all the things I had dreamt of but never got round to.
The thing is, I survived against the odds when I was born and I knew I could do it again with the help of my faith. But I knew I also needed to change my lifestyle. So I made changes. Big changes and not only is my lifestyle much healthier now, but I also feel better in myself.
Cancer is a real bastard and I won’t deny that the idea of a recurrence terrifies me. But cancer has also given me more clarity and purpose. It has stopped me from drifting from day to day and complaining about daily grind without doing something about it. There is still the daily grind, but I am also now working on my dream of becoming a full-time writer. I am working to raise awareness of womb cancer and Lynch syndrome and training for a big fundraiser next summer when my partner and I will cycle across Europe (roughly 3,500 miles or 5,600km).
I also want to inspire and show others that it is possible to survive cancer even when the odds are not on your side and you have genes that refuse to play ball.
Photo courtesy of author.