Anthony E’s story

Three days before my 40th birthday I was diagnosed with Stage 4 bowel cancer with liver metastasis. I sit here writing this 6 weeks later, after 2 rounds of chemotherapy (six planned) and in a good place considering the turn my life has taken in the last three months.

Some background first… I have always been active and healthy, having worked in the fitness industry for half my life. As far as risk factors go, I would tick one or two – a meat eater with a family history of many cancers (paternal side). Other than that, I would normally be told by GP’s ‘come back when your 45’ when I presented to them for a check-up.

We’ve moved around the last 10 years so haven’t had a consistent GP – not that I’ve really needed one.  When I presented to my current GP (new this year) with some change of bowel habits and diarrhoea that hadn’t cleared for a week, I once again mentioned my cancer history. He took bloods, listened to my concerns and from those results discovered I had a virus that was consistent with my presentation. I was told to come back if it didn’t clear after a week. I went back after a week and was sent home with a stool test kit and they took further bloods. The bowel screen test was positive for blood, so I was referred for a colonoscopy.

I chased up the referral after a week and was given a date four months away (incidentally that appointment is in two weeks from today!). Not happy with the timeline, I went back to the GP to find another option and was given a date five weeks away with another colorectal surgeon – much better. Symptoms continued but now I was noticing blood more often in my stool and occasional stomach cramps. Still, I was managing to exercise every day.

After the colonoscopy, I woke in recovery to be told I was to head downstairs for a CT scan after they found a large mass in the rectum. Five days later I sat with my wife in the surgeon’s rooms (while my 3yr old daughter was in daycare) and was told it was a ‘bad scan’ and there were several spots in the liver. I was booked for a pelvis MRI, liver MRI and PET Scan a week later and then sat in the same office to be told I had Stage 4 bowel cancer with un-resectable liver metastases. All lobes are affected so the only feasible option at this point was a potent course of chemotherapy in the hope it will shrink the tumours and other options like immunotherapy, targeted radiation or surgery could become viable.

I felt fear, sadness, anger, disbelief and grossly apologetic. It was a whirlwind few days as we processed the news, made even harder as my wife is an Emergency Doctor so she was well aware of the implications of the diagnosis. It got better with time and talking. We were honest with each other with our fears and concerns and that transparency brought us NED closer. 

Two weeks later I started chemotherapy which involves 5hrs infusion in hospital through a chest-portacath then I was sent home for two days with a drip feed attached. Once unplugged I was free for 11 days before heading back in again. Six rounds of this will take 12 weeks and get me to a re-scan and one of those ‘fingers-crossed’ moments.

They have completed tissue sampling for genomic testing, and the results are only a week away. I remain vigilant on the hunt for trials both here in Australia and abroad. I’ve created a strong care team with my GP, primary oncologist, secondary oncologist (friend), psychologist, dietician, and integrative oncology staff specialist – my approach will be holistically driven and I have already made changes to my diet (which has relieved my GI symptoms), continue to exercise every day since diagnosis (even taking in a bike stand to my hospital treatment), started mindfulness and meditation each morning and night, and arming myself with as much knowledge as possible to bolster my approach.

I know that I sit far outside the statistics for Stage 4 bowel cancer and the prognosis is dreary at best, but somehow the environment I’ve created within has allowed cancer to thrive. It’s the hope that in my efforts to change that internal environment, the cancer will realise it picked a battle with the wrong guy. I will still be part of a small percentage …but this time in the positive – as one of those who survived despite the odds.

The amount of love and support I have received from my family, extended family, and huge friends’ network has really put wind in my sails when I’ve needed it most. The story is far from over…

2023 update:

Having recently passed my 4-year “cancer-versary” it has given me a chance to reflect; not only on my own treatment pathway but also how much the early-onset landscape has changed.

I was diagnosed back in October of 2019, three days before turning 40, with Stage 4 bowel cancer with lymph node involvement and 20+ liver metastases. At the time I thought I was such an outlier as I had always viewed bowel cancer as an old person’s disease. My interactions with my medical team including colorectal surgeon, GP, and oncologist further supported the fact that I was “unlucky”, and I was told multiple times in the lead up to my diagnosis that I was too young for bowel cancer. Only now are we realising the alarming increase in incidence of early-onset bowel cancer, with 1 in 9 cases under 50 years of age.

My treatment began with palliative chemotherapy as my tumour load was considered inoperable, but with a great response to first-line chemotherapy, and after a few surgical opinions and MDTs (multidisciplinary team meetings) I was approved for major liver resection in 2020. Fast forward three years and one low anterior bowel resection, a second and third liver resection throughout 2021/22 and now 50 chemotherapy rounds, I stand face-to-face with another major surgery (peritonectomy) in January 2024. The aim is to remove a few small tumours embedded in my abdominal cavity.

During the last two years I’ve been actively involved in Bowel Cancer Australia’s online Facebook community “The Movement” and have found great support amidst this community of patients and carers and the various services offered by Bowel Cancer Australia. But what this has highlighted is the alarming rise in incidence of early-onset bowel cancer in Australia; newly diagnosed patients (several in their 20s and 30s) with an eerily similar back story to mine — minimal symptoms to act on at diagnosis, and often delayed action due to the now antiquated adage “you are too young for bowel cancer”. This message needs to change!!

Currently I’m super excited to be working on an initiative with Bowel Cancer Australia due to launch in January 2024.

I am creating an exercise sub-group in The Movement, focusing on goal setting, accountability, education, and support. I am building a workout hub/library that will continue to be added to addressing the kind of sessions suitable for patients – like varied cardio workouts, pool rehab, balance for neuropathy, core stability, resistance training, gym-based sessions, home-based sessions, yoga, flexibility, peri-operative conditioning, as well as stoma-aware options.

All exercises can be tailored by the patient and overseen by myself as a (semi-retired) Fitness Educator. 

I can already see the benefit of this program with our small trial group and once rolled out to the greater bowel cancer community I am confident it will build into a valuable FREE service improving patient wellbeing and livelihood after diagnosis for many years to come.

The highlight of the past four years was attending the inaugural “Call on Canberra” event in June 2023 with 50 other early-onset patients and carers to raise awareness and invoke action with the decision-makers in parliament house. The result of this initiative has not fully materialised yet but a reduction of the recommended screening age from 50 to 45 years is a huge step in the right direction.

No doubt with a renewed research focus, broader screening programs and endorsement from State and Federal government we will make a big impact on improved treatment pathways, advancements in bowel cancer prevention strategies and better overall patient outcomes and quality of life. I’m sure you will all agree — a cause worth fighting for!