It took doctors five years to diagnose my colorectal cancer, and when they finally did  it was already stage three and had started to impact my whole body.

When blood appeared in my stool after the birth of my first child in 2015, they told me it was just a side effect of child birth.

As a physically active and healthy 33-year-old, I believed them. 

But the blood didn’t stop. It changed from tiny flecks to thick ribbons in my stool, and would then gush out of me filling the toilet bowl. My stool became shaggy and smelled putrid, like rotting flesh.

I visited multiple doctors dozens of times in those five years from when my symptoms began, only to be told again and again that it was related to my pregnancies and births (I had my second child in 2017 and third in February 2020).

Knowing what I do now, I’m sure that had I advocated for myself more, they would have caught the cancer sooner – before my tumor grew to the size of a golf ball and  reached stage three.

I made mistakes in my cancer journey: I’d often wait until the end of appointments to tell doctors why I was there, I didn’t push for tests and I was embarrassed to show pictures of my toilet bowl.

And whenever symptoms would subside, which happened from time to time, I would breathe a sigh of relief and go on as normal – believing it had been ‘cured’.

My diagnosis – which finally came in summer 2021 after a test on my stool and a colonoscopy was ordered by my new gastroenterologist – came amid a rise in colorectal cancer cases in young people. 

The cancer is now among the fastest growing in 20- to 29-year-olds, with cases rising by 2.4 percent on average every year.

Figures from the American Cancer Society suggest that nearly 18,000 people under 50 years old will be diagnosed with the cancer this year. Of them, an estimated 3,700 will die from the disease.

To treat the disease, I underwent six rounds of chemotherapy, 28 rounds of radiation accompanied by oral chemotherapy twice a day, a seven-hour rectal reconstruction surgery and another six rounds of chemotherapy.

I had to have an ileostomy bag – a bag that the intestines empty feces into – attached to my body for four months, and then another surgery to reconnect my gastrointestinal tract. The waves of surveillance fear and ‘scan-xiety’ is a continual burden.

Here’s what I wish I had done to get my cancer diagnosed earlier.

Document your symptoms and show them to your doctor

It sounds embarrassing, but to get any complications you have diagnosed quickly you must photograph them and show the pictures to your doctor in a timeline – no matter how unpleasant they may be.

That goes for whether it’s blood on your toilet paper, what’s in the toilet bowl, or anything else that could be a warning sign.

I had a photo log in my phone of what I was seeing in the toilet, because it was so different than normal. I even put them into a particular album on my phone, but initially, I was too embarrassed to show my doctors.

When I first showed them to a gastroenterologist shortly before my diagnosis, it became clear that if I had revealed them earlier I would have been sent directly to get a colonoscopy.

For me, the first warning sign of the cancer was blood coming from my backside. It was just a little bit, but not normal. 

This blood then turned into ribbons inside my poop, that were intermittently there, and a year-and-a-half before my diagnosis, my stool changed in size, color and smell.

The toilet bowl would fill with blood and I had an urgency to go to the bathroom. I wasn’t able to keep anything in my body.

The Mayo Clinic lists changes in bowel habits and bright red blood in stool as among the most common symptoms of colorectal cancer. 

This happens because, as a tumor grows, it disrupts the passage of waste through the colon, while the growing tumor also damages blood vessels, causing bleeding.

Dr Cedrek McFadden, who works treating colon cancer patients in North Carolina, agreed, telling me, ‘A picture is worth a thousand words.

‘If a patient feels this is the best way to bring symptoms and findings to a doctor, we are always happy to review it as part of the decision making process.’ 

Start your appointment with your concerns

It’s important to start every doctor’s appointment clearly explaining why you’re there and what you’re worried about.

Some doctors ask this at the start of a session, but many have their own agenda and their own opinion on your case when you arrive.

The result is that you wait and sit quietly, hoping they might ask the question you want answered.

This wastes valuable time and when you finally raise your concerns, your doctor’s mind has moved on to the next patient.

I must have spent dozens of appointments this way, waiting for the end to then say, ‘I have these issues’ or ‘I’m bleeding here, can you take a look? Is this normal?’

Now, I walk in and say, ‘OK, here are three things that I’m thinking about’, and find my concerns are addressed.

‘Patients can get overwhelmed when they come into my office or forget what they want to say. It can be a lot at the start of an appointment,’ Dr McFadden said.

‘I always give them the first few minutes to talk about their concerns. I recommend that they write down everything they want to talk about first so that they don’t forget anything.’ 

Ask your doctor for tests

It’s essential to ask your doctor for any tests that might be available to help diagnose the problem you’re experiencing.

Oftentimes, I feel there is a dismissing of concerns from women who will hear, more often than men, ‘oh, you’re over-reacting.’

One way to get around this is to get tests done.

In my case, I didn’t have any tests for about four years after my symptoms appeared. I wasn’t aware you could, I just knew I wanted my symptoms to go away.

But after I was referred to a gastroenterologist, she became concerned and referred me for a stool test. This revealed the blood in my feces, which led me to have a colonoscopy – the gold standard for diagnosing colon cancer – that came back positive.

I could have had that stool test earlier, had I known to ask.

‘It is advantageous for all patients to be their own advocates, and that means requesting things that your doctor may have mentioned,’ Dr McFadden said.

‘Sometimes, you do have to be a little more persistent with things you feel you need to get.’ 

Confide in your loved ones

Another mistake I made was not consistently confiding in those close to me.

I would sporadically tell people about my concerns, telling my husband about one symptom or casually raising a concern while visiting with my mother.

The result was people kept trying to reassure me, and tell me that there was nothing wrong and I shouldn’t be worried.

It also meant that no one had a whole picture of my symptoms and how they were changing, which could have been the crucial link for someone saying I needed to get checked.

From the patient perspective, this encouragement is really important because you don’t always know how hard you should be advocating for yourself.

It’s also important for them because it opens up the opportunity for them to enter a supportive role as you go through this process.

I am lucky to be cancer free now, but feel I owe it to others to raise awareness of the disease. So, I started my own organization, the BE SEEN Foundation, to do just that. 

I’ve also launched my own podcast, From Carpools To Chemo with Marisa Peters, to further raise awareness about the cancer.