Shae’s story

My name is Shae. In early July 2023, I was diagnosed with Stage 3 rectal cancer at the age of 37.

Starting in August 2023, I undertook 28 rounds of radiation and 8 rounds of FOLFOX chemotherapy.

In February 2024 I undertook restaging scans which showed a complete clinical response to treatment with no evidence of disease.

At that time, we thought I was cured.

In May 2024 I had monitoring scans and flexible sigmoidoscopy. The sigmoidoscopy showed a sustained response with no sign of cancer or the tumour. The PET scan showed lung metastases, and my diagnosis was amended to Stage 4.

I commenced FOLFIRI chemotherapy in June of 2024 and did around 11 rounds. I found FOLFIRI incredibly difficult but a PET scan in November showed a complete metabolic response to treatment, so I was put on maintenance chemotherapy.

I did maintenance chemotherapy from November 2024 to February 2025. My routine PET scan showed that maintenance therapy had failed, and my cancer was metabolically active again and my lung tumours had grown.

I spoke with my oncologist and voiced my concerns about indefinite chemo and how badly it had affected my quality of life. This was something really important to consider given my life expectancy was estimated at 12-24 months in June of last year. On that basis, we decided to explore all alternatives to chemo.

I met with a thoracic surgeon and a radiation oncologist about localised treatments. Unfortunately, given the location of the tumours and cancerous lymph nodes in my left lung (being near my heart and in the hilar region) they were not able to do anything for me.

Exploring these options has meant a break from chemo since February. Scans in May revealed my cancer is now significantly metabolically active and the tumours and lymph nodes have all grown, but this was probably to be expected given the treatment break.

Silver lining is that there are no new tumours in my lungs or anywhere else.

Bowel cancer research is incredibly important. The breakthroughs that are (and have been) developed will undoubtedly save and extend the lives of those with bowel cancer.

As a father of a 6-year-old that’s all I want, more time with my son.  This research also gives hope and sometimes when you have exhausted the standard of care options, hope is all you have.

I am currently waiting for acceptance onto a clinical trial and am thankful that bowel cancer research gives me this opportunity.

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PREVIOUSLY:

The diagnosis came just under three weeks after my 37th birthday and I was in some of the best shape of my life having trained roughly 10 hours a week for five months for an endurance cycling race.

My diagnosis came as a complete surprise as I had no symptoms other than some minor blood in my stool. Being a non-smoker, only drinking alcohol very occasionally, being physically active and having a decent diet meant that I had put my symptoms down to haemorrhoids.

After some encouragement from my mother and partner I agreed to see a GP about my symptoms who, in turn, referred me for a colonoscopy.

I recall being somewhat annoyed at the inconvenience of what I thought was going to be a redundant and routine test. On the day of the test, I joked with the anaesthetist and gastroenterologist as I lay waiting for the procedure to start. The last thing on my, or anyone’s, mind was that I might have cancer.

As I awoke from the procedure, I remember the nurse saying that my partner was already waiting for me, which seemed odd. Then my phone started to go off. Notifications that an MRI and a CT scan had been booked on my behalf.

I grabbed my medical file at the foot of my hospital bed and flicked through the notes which recorded that a ‘mass’ had been found. It was at that point I became scared. I asked the nurse what was going on. She said that I had to meet with the gastroenterologist who would explain.

It was in the gastroenterologist’s office that he advised me that an ulcerated tumour was found in my mid-rectum and that it was likely cancerous. I remember my partner and I crying and immediately thinking of my then 4-year-old son and what this would mean for our family.

The subsequent scans and testing confirmed that I had Stage 3b rectal cancer. After several meetings with my oncology and surgical team, we agreed on a treatment protocol and in early August my cancer treatment commenced.

I initially completed 6 weeks of chemoradiation and am due to have my 6th chemotherapy infusion soon. My treatment is ongoing until early-to-mid-January 2024 where I will then undergo a series of tests and scans to determine the efficacy of my treatment and to determine the way forward.

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My ‘one piece of advice’ –

Doing research and getting an understanding of what treatment options were available was a really important step. I was able to be very clear about what I did and did not want and had the journals to support these decisions. I was also able to have higher level conversations about treatment options and outcomes with my care team as there was already a higher level of understanding.

This process is hard. I find the emotional and mental part of this journey particularly difficult. I wouldn’t underestimate the value of your support network and I would call on each and every person you have available to help you through this.

Understand your income protection position. If something unexpected, like a cancer diagnosis, happens it can impact your capacity to work. This in turn can cause huge financial stress. Knowing that your protected and having something like that in place can make a massive difference.

Private health cover. My treatment has attracted tens of thousands of dollars in medical costs. These have largely been borne by my health fund. I can’t speak to treatment in the public system, but I have been really glad to have had this coverage in place.