Bowel cancer is not just a disease of older people

A young surgeon’s experience as a patient with bowel cancer

If you ask any clinician, becoming a patient is an unusual experience. When you couple that with the naivety of youth, embracing the role of a patient is particularly challenging. 

“We are taught that we when we hear hoof beats, we should think horses, not zebras.”

As part of surgical training, and even in medical school, there are specific red flags that are taught to all of us. ‘Bowel habit change’ and ‘per rectal bleeding’ are not a great combination. We are also taught that we when we hear hoof beats, we should think horses, not zebras. So when I developed these symptoms I just assumed that I probably had a benign cause of bleeding. I assumed this for six weeks while I worked in a high volume liver and kidney transplant unit until I decided it was bothersome. I picked up the phone to one of my mentors, a colorectal surgeon. She subsequently performed my low anterior resection.

My story is different. I class myself as one of the lucky ones. I was aged 33, with no significant family history, only stage 3. I underwent a low anterior resection, fertility treatment and then 6 months of adjuvant FOLFOX. FOLFOX was not very kind. I didn’t require neoadjuvant radiotherapy, had clear margins and only 2 positive nodes. It is amazing how different your perspective is after such an unexpected life interruption. My life changed completely in one single moment.

From the beginning I called myself a lucky unlucky person. I had encountered young people with colorectal cancer in my surgical training, however, in clinics with 30-50 people being followed up in our public health system, it was still a rarity. When I was diagnosed in 2018 I only really began to appreciate the growing trend of young people being diagnosed with colorectal cancer. People that are not considered at risk. People under the age of 50. Where screening programmes exist, all of these people would be too young to be screened. The age for screening in the United States has recently been lowered. It is still not practical for many reasons to extend population based screening to include those who are even younger. While the figures are alarming us all and steadily climbing, they still don’t meet criteria to support population based screening. 

“Becoming a patient reveals so much more about patient care and management.”

What is practical and even more alarming is these people’s stories. Bowel Cancer Australia and Bowel Cancer UK frequently highlight individuals who I never thought I would relate to. I am one of many in a long list of patients who are only too happy to tell their story in hope that someone might not have to go through and live with the effects of cancer. Becoming a patient reveals so much more about patient care and management. The anxiety relating to waiting, having scans, and to having your first operation as such a major one. The knowing too much, from the very beginning. After I was told that my surgeon found a cancer, I know I asked where it was. I meant anatomically. I asked this as I knew what the next investigations would be and what treatment (if I wasn’t metastatic) was being considered. It’s not a normal opening question from any other patient.  

It is really encouraging to see increasing attention being paid by researchers and surgical journal editors to the rising rate of colorectal cancer in young people, because it means that the message is being delivered regarding the need to investigate symptomatic people. This is separate to any screening argument. I have been part of the #Never2Young campaign and consider myself obliged to advocate for such awareness campaigns not only as a health professional, but as a colorectal cancer patient. I have become a statistic. I am one of those people diagnosed with a left sided colorectal cancer in the age group 20-49. 

Publishing real data and real stories and disseminating them will reach our communities and our clinicians working on the front line, trying to sort through who to investigate further or not. The message is becoming clearer for them now. Symptomatic people need investigating. I have seen firsthand only too many young people who have dismissed their own symptoms or had them dismissed by all levels of care. There are barriers to appropriate investigation with colonoscopy for many reasons. We need to make sure patients are better supported. 

“Cancer does not discriminate.“

I have completed treatment. I have had highs and lows within my surveillance already. I am lucky enough to have returned to work finishing my time in general surgical training. Navigating through life post treatment has days of uncertainty and sadness. I never stay sad too long. I constantly get reminders of just how lucky I am to still have this life that could have so easily been taken from me.

Cancer does not discriminate. It will choose anyone at any time. Anyone with symptoms needs to be investigated, as sometimes those hoof beats are actually zebras.