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UPDATED 2023: It’s been over three years since I was diagnosed with Stage 4c bowel cancer.
In that time, I’ve had two operations, 11 rounds of FOLFOX chemotherapy, one very scary hospitalisation for neutropenic sepsis and encephalitis, and 24 rounds of immunotherapy.
Unfortunately, the traditional treatment of surgery and chemo didn’t work for me because of several germline (genetic) and somatic (tumour) mutations.
After six months of treatment, my cancer spread from my bowel to my liver, pancreas, abdominal wall lining, chest, throat, lungs and a lot of lymph nodes.
Things looked very bad for a few months and I was faced with the real possibility of dying.
Luckily, two of those pesky mutations made me eligible for an immunotherapy trial. Even better, I was accepted onto the
trial after a very nervous six-week wait and lots of tests.
After just eight months on the trial, my disease was classed as stable!
My oncologist and my family were overjoyed. We thought it was the best news we could hope for. But then, my tumours and nodes just kept shrinking!
In May 2022, after 20 rounds and 20 months of immunotherapy, my oncologist gave me the amazing news that I’d had a complete metabolic response to the treatment.
I had no evidence of disease (otherwise known as ‘NED’)!
I finished the immunotherapy trial in August 2022 on the day before my 30th birthday, after two years and 24 rounds.
It was a very emotional day for everyone, especially my care team because we never thought I would make it that far.
Having access to an immunotherapy clinical trial LITERALLY saved my life.
After traditional treatment failed, I was told my only options were to start palliative chemo or try and find a suitable trial – if one even existed. I can say with confidence that if it wasn’t for my oncologist and this trial, I wouldn’t have lived to see Christmas 2020.
The trial also allowed me to begin improving my physical health, as immunotherapy is not as harsh on the body as chemo.
I regained weight and muscle and felt healthier overall, which is important when you’re having long-term cancer treatment.
I’ve also achieved a few ‘life’ milestones too. My husband and I bought a house, I’ve returned to work – casually, for now – and we’re about to go on our first big post-covid, post-cancer holiday.
As for the cancer side of things, I’m now on a ‘watch and wait’ program, where I have cancer-monitoring bloods taken and a CT scan done every three months.
My latest milestone was in February 2023 when I achieved nine months NED.
I still have a long way to go, but I’m over the moon with my progress so far and am very much looking forward to the future.
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I was 27 when I was diagnosed with Stage 4 bowel cancer in December 2019. I had recently graduated university after 6½ hard years of studying by distance and started a wonderful new job in public relations.
In the year prior to my diagnosis, I had a number of classic bowel cancer symptoms. However, I never in a million years would have thought I had cancer! I had no family history of cancer; I ate healthily, and I rarely drank.
I was extremely tired. Sometimes it was so bad that I slept 12+ hours a night, but I put this down to my busy life. I also had terrible reflux. Over-the-counter antacids didn’t help, and I woke at night with a burning chest. My abdomen was always bloated, and I looked pregnant. I had abdominal cramping which made me feel nauseous, sweaty and was so severe that I curled up in a ball with a hot water bottle for hours. My poo turned a tarry dark brown and passed in small pebbles or long, smooth, flat pieces.
It was the bloating and cramping that made me see a doctor. I realised it had been happening for too long and something had to be wrong. I thought I probably had coeliac disease because my maternal aunt has it.
I’m lucky (yet unlucky) that my cancer was so advanced when I saw my doctor. She did an external examination of my abdomen and was able to feel my tumour (I didn’t know this at the time). She sent me for an abdominal X-ray and a transvaginal ultrasound, which both came back clear. I also had a full set of bloods taken, which showed I had extremely elevated kidney and liver markers and I was severely anaemic.
This all took five days and on the sixth day, I was sent to the local hospital for an urgent CT scan. I had one CT scan taken and then another. The second CT scan showed an unmistakable very large mass in my transverse (middle) colon and I was diagnosed straight away by the doctor on duty in the emergency ward. I was airlifted the next morning to a larger hospital, where I immediately began bowel prep. I had a colonoscopy the next day, which confirmed I had a very nasty looking tumour (an adenocarcinoma) almost completely blocking my colon. It was 7cm long, 6.5cm at its thickest point and 3.5cm at its thinnest point.
The next day, I was rushed in for an emergency operation called an extended right hemicolectomy. Because my tumour was so big, the doctor wasn’t able to do a full colonoscopy and I was told I was having open surgery. It all happened so fast, and no one really knew what I was in for. I had 22cm of my large bowel, 2.5cm of my bowel join, 5.3cm of my appendix, 19cm of my small bowel and 73 lymph nodes removed. Luckily, I didn’t need a stoma bag, but I was left with an 11cm incision.
My recovery was tough, but I was released after 10 days in hospital. Further tests showed that 8 of my 73 lymph nodes were cancerous, so I was told I needed to start chemo ASAP. It also showed that I had a genetic mutation called Lynch syndrome, which explained why I was diagnosed with bowel cancer at such a ‘young’ age.
I had seven weeks to recover from my operation, during which I had another small surgery to fit a portacath in my chest. This meant I didn’t need a cannula inserted each time I needed blood taken or had chemo and it made things a lot easier. I had 11 rounds of FOLFOX6 over six months. I had to go to the hospital once a fortnight for an infusion of oxaliplatin, leucovorin and fluorouracil and then I took a bottle filled with fluorouracil home, which was pumped over two days through my port.
Chemo was really hard. The oxaliplatin gave me cold sensitivity, which meant I couldn’t get anything out of the fridge or eat or drink anything colder than room temperature. I had terrible nausea and spent most of the first five days of each cycle in bed. I would regain my strength over days six to nine, and then have a few good days on days 10 to 13, then it was back to hospital.
Unfortunately, chemo didn’t work for me and my cancer spread from my bowel to my liver, pancreas, abdomen, chest and lungs. Things looked very bad for a few months, and my fiancé and I were faced with the real possibility that I might die. Luckily, a mutation in my tumour made me eligible for an immunotherapy trial at the Princess Alexandra Hospital in Brisbane. So, my fiancé and I packed up our lives and moved 10 hours south to Brisbane.
I’ve been on the immunotherapy trial for nine months now and in that time, my tumours have shrunk over 65%. As of my latest CT scan in April 2021, my disease is classed as stable. The plan is to continue with the trial for the full two years, so I have another 15 months to go.
Bowel cancer had so many negative impacts on my life that I didn’t anticipate. Most of my greatest challenges came from being diagnosed at a younger age. I couldn’t just scale back to part-time employment or retire like older patients do – we’re trying to save for a house! I hadn’t even thought about having children yet and suddenly, I had to think about fertility preservation! But I believe it’s better to focus on the good! Cancer bought my now-husband and I much closer. It made me a stronger, more determined and less anxious person. I used to plan every minute of my life and now I just take things day by day. I’ve met a lot of amazing people and made new lifelong friends.
Knowing what I know now, the one piece of advice I have for others on their own bowel cancer journey is to stay positive. It sounds really silly, but I truly believe my positive attitude has been a key part of getting me to where I am today. I’ve had some very dark moments over the past 16 months and while there have been days that I’ve broken down and couldn’t face the world, I’ve always picked myself back up again. Keep charging forward and take the good with the bad.