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Bowel Cancer Awareness Month: Caitlin’s story

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Think of bowel cancer and you likely picture your father or grandfather, rather than yourself, your best friend or your sister.

It’s widely considered an old man’s disease. It’s not. In August 2015, at the age of 34 and only eleven weeks after the birth of my first child, I was diagnosed with stage 4 (terminal) bowel cancer.

At the point of diagnosis, more than two-thirds of my liver was covered in secondary tumours. My diagnosis came about due to excruciating pain in my right shoulder which resulted in an ultrasound. The ultrasound found liver lesions too extensive to count- these turned out to be secondary tumours. And thus began the hunt for the primary. Due to my age doctors initially thought my primary must be breast or melanoma, but tumour markers indicated that it was gastrointestinal cancer, and after a colonoscopy, a primary was found in my bowel.

I am one of many younger adults living and dying with this diagnosis. Far too many of us are diagnosed with advanced cancer when it is much harder to treat. We don’t know why the rates in young people are rising but we know that they are – alarmingly so.

In 2017 the American Cancer Society reported a 186% increase in bowel cancer cases in 15 – 24-year-olds over the past three decades. In Australia, bowel cancer is the most common cause of cancer death for those aged 25 to 29 years, and with brain cancer is responsible for the greatest number of cancer deaths in those aged 30 to 34 years (Bowel Cancer Australia). These are scary figures and we need to make far more of a fuss about them.

While we currently don’t know how to stem the increasing rates, we can do better on early diagnosis for younger adults. Many younger women are diagnosed at a time when we are either trying to get pregnant, are pregnant or are post-partum. This can mask bigger health issues and in my case the typical bowel cancer symptoms that I did have (nausea, abdominal pain, fatigue and anaemia) were attributed to either the effects of fertility treatment, a difficult pregnancy or recovery from a c-section.

The limited screening programs that do exist are targeted at those fifty or older and even if you are willing to pay, some doctors are reluctant to refer you on for a colonoscopy as they don’t consider a cancer diagnosis to be likely.

No one really likes to discuss their bowels. But believe it or not, thirty years ago breast cancer had a stigma much like bowel cancer does today. We are bombarded now with the need to check our breasts and to follow up on changes. Bowel cancer needs to be the same.

We need to grow up, pay attention to our bodies, push through any embarrassment and see a doctor when things are not right. As my friend Sarah says, “we need to shout ‘blood in our stool’ from the rooftops. Yes, it’s awkward when you find yourself regaling a handsome young doctor with your bowel movements, but well, that’s life.

My life has changed dramatically since diagnosis. Paulo Coelho writes of standing with “one foot in a fairy-tale and the other in the abyss”. A cancer diagnosis throws both the fairy-tale and the abyss into sharp relief. I very much miss my easy assumptions that life was largely within my control – in some ways this has been the hardest thing to cope with – harder than seven surgeries, three intensive care admissions, acute respiratory distress syndrome, internal radiation to my liver and forty-one rounds of chemotherapy. But I am so very glad to be here and I’ll continue to take every treatment option that I can and to eke out as much of this life as I can.

Know your body and make a fuss if you need to. Bowel cancer is highly curable if caught early and in many cases highly treatable if discovered later.

June 4-10 is Never Too Young Awareness Week, a dedicated week during Bowel Cancer Awareness Month to raise awareness of early-onset bowel cancer. You can find more information at bowelcanceraustralia.org/youre-never-too-young

Useful resources

colontown.org

healthdirect.gov.au/bowel-cancer

Caitlin blogs (sometimes sporadically) at caitlinmoorhouse.com

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