Amy W’s story

In May of 2020, my partner and I decided to uproot and move from our home in regional NSW over to the coast. As it was early on in the pandemic, my focus was on getting my kids enrolled in their new school and finding myself a job. A month or two later I noticed blood in my stool. Having had internal hemorrhoids removed in the past I wasn’t overly concerned but I decided to find a GP in our new town and get checked out.

I made an appointment as a new patient with the first GP I could get into. He listened to my symptoms, and told me at age 36 ” You’re too young for it to be cancer “, suggested it was probably just stress from the move and sent me on my way, telling me if things got worse to come back and see him.

Within a few months, the bleeding had gone from intermittent to blood with every movement, and I was having more frequent movements. The GP again tells me ” You’re too young for it to be cancer ” and suggests it’s probably IBS, I should try changing my diet. However, he’ll send a referral off to a specialist.

After another few months and now in mid 2021, my bleeding is still every movement, I’m having multiple movements a day, and a feeling of never being empty, no matter how many times I go to the bathroom. I call the GP’s office to let them know that I still haven’t heard from the specialist, only to be told the GP I was seeing no longer works in the practice and they have no record of a referral on their system.

I make an appointment with a different GP. This one is sympathetic and he tells me ” You’re too young for it to be cancer ” .He orders a blood test and he sends a referral to a specialist, but warns me that I’ll be on the waiting list for months because they don’t like to waste colonoscopies on people so young.

In August 2021 I have an initial consultation with the specialist. He tells me ” You’re too young for it to be cancer ” but thinks its probably IBS or ulcerative colitis, and puts me on the public waitlist for a colonoscopy. I get a call in December to say they can fit me in, but by this time I am in the process of moving to Qld and have no-one who can help me before or after the procedure, so they advise that I start the process again in Qld.

My daughter and I follow my partner to Qld when the borders reopened in January 2022. Again the focus is on getting her enrolled for school, and starting my new job. But by late March I still have the bleeding, I was having up to 14 movements a day, the same ‘ never empty ‘ feeling, and now have stomach cramping and intermittent nausea.

I make an appointment with another new GP. She is concerned. She tells me ” You’re too young for it to be cancer ” but sends a referral for a colonscopy through the public system. This time I am triaged as urgent and told I’ll be having the procedure within a month.

May 3rd 2022 I’m in for my colonscopy. The specialist comes to see me prior to the procedure and asks me questions about my symptoms and tells me ” You’re too young for it to be cancer “. He says its likely IBS and tells me a nurse will see me in recovery. Instead, I wake up to the specialist advising me he’s found a tumour, and they are taking me straight out of recovery to have bloods taken and a CT scan done.

Two days later he calls and tells me there are lesions in my liver. We do a further ultrasound, then an MRI and then a PET scan, just to be sure. In June I’m officially diagnosed as stage 4 rectal cancer with liver metastases at the age of 38.

Since June 2022 I have had 6 rounds of chemotherapy, had half of my liver removed with a liver resection, 25 rounds of radiation and a month ago ULAR surgery with a loop ileostomy. I see my oncologist again next week to decide on how much mop up chemo to do now that I’ve had my primary tumour removed. I’m hoping its only 3 or 4 months instead of 6 months worth …. and then I’m taking myself off on a much needed holiday!

Along the way my hair fell out, my relationship broke down and I’ve moved back to NSW for the family support.

I’ve made my peace with having cancer. I’ve had my tumour biopsy and genetic testing done and it turns out there is no genetic cause for my cancer and I’m just one of the unlucky ones. But if all those doctors had looked past my age and actually looked at my symptoms I might have been diagnosed at stage 1 or stage 2. I wouldn’t have needed as much treatment and my prognosis would be better, rather than facing statistics that say I will likely pass away before my children are adults. The #Never2Young campaign is important because not only do young people need to know they aren’t immune to bowel cancer …. but so do our medical professionals. It’s literally a matter of life and death.

One piece of advice for others

Don’t always trust in what your doctors initially say. As patients, we typically trust that our doctors know best, and go along with their advice. But you know your own body – don’t be afraid to advocate for yourself!

Even though I knew something wasn’t right, when my doctors downplayed my symptoms I just went along with it, believing the doctors knew best. If I had my time over I would have been more proactive about getting that colonoscopy ASAP!