Toni M’s story

 On the 6^th April 2023, in a tiny curtained off cubicle in the chaotic ED my life changed.  I received a shock diagnosis of bowel cancer which I later learned had spread to my liver and lymph nodes. I underwent major surgery to remove two thirds of my bowel and following that another surgery to resect the affected area of my liver.  Six months of gruelling fortnightly chemotherapy followed which has left me with significant neuropathy in my hands and feet that impacts my ability to walk long distances and at times my balance.  I now live with the BRAF V600e mutation of Stage IV bowel cancer.  I have endured two further significant surgeries, and  life today is a constant cycle of scans and surveillance, a vigilance to ensure if it returns, and the harsh reality is it probably will, we catch it early. 

I’m generally not one to live with regrets but I definitely wish I had of been taken more seriously in the months and years leading up to my diagnosis.  I had been presenting to my GP fairly regularly over a period of about 18months with changes in my bowel habits, blood in my stool and ongoing gastrointestinal issues.  My GP put it down to my highly stressful job and diagnosed me with IBS.  I was not offered any diagnostic testing such as a colonoscopy or CT Scan, just recommendations around diet and lifestyle.  It’s impossible not to wonder how different my prognosis would be had my symptoms been investigated more thoroughly or had my GP considered bowel cancer likely at 46.

I hope that my story implores others to advocate fiercely for diagnostic testing when something doesn’t feel right. 

PREVIOUSLY:
I was diagnosed in April 23 at age 46 after a presentation to A&E with excruciating stomach pain. A CT scan revealed a mass in my transverse colon, highly likely to be cancer. I can’t describe the fear I felt in that moment or the anguish of having to relay it to my husband and later my 4 teenage children.

I had been experiencing issues with my bowels for some 18mths and after multiple presentations to my GP she diagnosed IBS.

2 weeks after diagnosis I underwent a resection of my ascending and transverse colon and the removal of 26 lymph nodes. Tests confirmed I had Stage IV colon cancer with metastasis to the liver and the BRAF v600e mutation.

A month later I underwent a liver resection and commenced 8 rounds of CAPOX 6 weeks later.

I have had unwavering support from my husband, children, family friends and workplace. They kept me going through a brutal regime of chemotherapy that has left me with significant neuropathy in my feet and fingers.

I feel incredibly fortunate that I am currently NED but the psychological impact of living life in 3 month increments between bloods and scans is at times incredibly challenging and difficult for others to comprehend.

I hope and pray for new treatment options for myself and others who are impacted by this awful disease.

Advice for others:
Don’t ignore your symptoms or allow them to be minimised by health professionals. Advocate fiercely for diagnostic testing.