Video above: Insight finds out how you can prevent bowel cancer. Full ep. on SBS On Demand.
At the age of 20, I began to experience troubling symptoms like constipation, rectal bleeding and low iron. At first I thought it was a food intolerance or perhaps I was run down from the busy life of a uni student, but it seemed odd that I was so lethargic all the time.
I got dismissed by multiple doctors over the years and one went as far as to say I was making poor life choices for a 22-year-old. It took so much courage to talk about my bowel movements out loud, so to be told it was my fault deterred me from finding an answer.
When I turned 25 I decided enough was enough. I knew my body and I knew that something was terribly wrong. Perhaps I wasn’t “too young” for bowel cancer?
I saw a fantastic GP who referred me for a colonoscopy, which showed that my bowel was carpeted in polyps (pre-cancerous growths). While I was still woozy from the anaesthetic, I was asked about any family history of cancer because what they found is characteristic of Familial Adenomatous Polyposis (FAP), a rare hereditary bowel cancer gene.
Within a week I met with a colorectal surgeon who said that if I didn’t have my entire large bowel removed within the year, I would develop bowel cancer. I also found out that I would likely develop a Desmoid tumour, a rare soft tissue tumour linked to my genetic mutation.
Sofiah pictured after surgery. Source: Supplied
I went ahead with surgery, which was a success, but unfortunately they discovered a Desmoid tumour had already grown. It was removed during my colorectal surgery but about seven months later it grew back. Desmoid tumours are aggressive and react to trauma so more surgery wasn’t recommended unless I’d exhausted all non-surgical options.
So off I went to meet with an oncologist. We had barely gotten to know each other when the tumour started growing out of control. A further scan showed that it was occupying my whole abdomen and blocking my ureters and kidneys.
We needed to quickly move to plan B. It was scary to hear that I had to start chemotherapy, but I knew it was my best shot. In the back of my mind I was thinking… not another thing to explain to the people at my work.
The first chemo regime was gruelling and took so much from me physically, most notably my hair, but devastatingly my tumour didn’t respond. My oncologist had another chemo lined up which thankfully I responded to.
Through all of this I was working full time in marketing in a fast-paced environment and I decided to keep my illness quiet. I felt a lot of pressure to be a high performer and I didn’t want to miss out on opportunities so for this reason I didn’t tell my colleagues. I also had no idea how to explain this rare disease to people, especially because I didn’t fully understand it yet myself. Unlike some other cancers, which are a bit more straight forward to explain, this cancer was more complex. I knew people would likely have a lot of questions and the thought of constantly explaining the complexities of it was daunting.
Sofiah pictured after her hair started to grow back post chemotherapy. Source: Supplied
This was a really tough time of my life juggling work meetings with doctors’ appointments, whilst coping with the many side effects of chemo that can hit you at any time, with no notice. I’ll never forget the day I revealed my post-chemo hair at work. I felt exposed and terrified, but I had to keep up my act so I pretended I’d just decided to go short. Colleagues remarked about what a cool choice it was to go for a pixie cut; little did they know I had no choice.
It’s been six years since my diagnosis of FAP and a Desmoid tumour. I am still on active oncology treatment but thanks to my wonderful medical team I am on an experimental drug that is keeping things stable with no side effects.
I have since changed jobs and I now work for a cancer charity, a move inspired by my personal journey. It's a much more understanding environment and when I started working there I had a few years of lived experience under my belt, which gave me the confidence to share my story in the workplace. With my newfound confidence I also started a blog and Instagram page about my experience that is very cathartic and has connected me to people around the world going through a similar health challenge.
I hope my experience shows that even when we hit hurdles, we can achieve great things. My fear of being held back in my career turned out to be just that, an irrational fear. I have been given many great opportunities for career progression and if anything, I am more motivated in my work than before I got sick.
