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what it feels like: colorectal cancer 'is not glamorous at all'

there were other signs, like bloating and abdominal discomfort, but it was the rectal bleeding that led catherine perka to a gastroenterologist and a cancer diagnosis: 'the whole thing feels like, i want to say a dream, but it was more like a nightmare.'

by emma jones

mar 16 2023

7 minute read

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what it feels like: colorectal cancer 'is not glamorous at all'

catherine (left) was ten weeks pregnant with husband dan (right) when she was diagnosed with colorectal cancer. supplied

colorectal cancer, also called colon or rectal cancer, typically begins with small growths in the digestive tract called polyps. the cancer typically doesn’t have many symptoms until later stages, which can include bleeding from the rectum and feeling like bowel movements are incomplete.

approximately one in 16 canadian men and one in 19 women will develop colorectal cancer during their lifetime, according to the canadian cancer society. it is also estimated that one in 34 men and one in 40 women will die from the cancer.

catherine perka sat down with healthing to share her experience and raise awareness about the symptoms and side-effects that we are often too embarrassed to talk about, but could save our lives if caught early.

what led to your colorectal cancer diagnosis?

i started getting symptoms going back to january 2019. looking back, they probably started before that — bloating and just discomfort in the abdomen. but a lot of people experience that, so you don’t really think much of it. once i got the rectal bleeding i was like, ok, that’s not right.

it kind of snowballed from there. when my first symptom showed up, it wouldn’t let up and it just got worse and worse and worse. i would be bloated — way more than if you eat something you shouldn’t. it was so uncomfortable. and then [there were] changes in bowel habits.

i went to the doctor in january, once i saw the bleeding. they thought it was internal hemorrhoids, which is very common for a younger person going in with that type of symptom. at first, nothing resolved within a couple of weeks. i went back and then i was referred to a gastroenterologist, but it took about five months to get the appointment.

what was that like, knowing that something is clearly wrong but then having to wait five months for an appointment?

it was horrible. you’re just waiting, and the symptoms are getting worse and worse.

once you got to the gastroenterologist, what was the testing like?

i was scheduled for a sigmoidoscopy that day. typically, you would be scheduled for a consult first, but because i was having bleeding they just went straight to the sigmoidoscopy. i was diagnosed on the spot.

[the gastroenterologist] took biopsies of it, but she sat me down after the sigmoidoscopy and she said, ‘i know what i’m looking at and it’s definitely cancerous.’

what is a sigmoidoscopy like?

for a colonoscopy, they’re going through the whole colon, so there’s prep and you get sedated. but for a sigmoidoscopy, they’re just doing the sigmoid colon, which is just the bottom portion. there’s no prep and it’s not comfortable, but you can handle it without sedation. you’re completely awake.

there was a screen and i was watching, and what i saw on the screen was not a healthy thing. it did not look good.

it took approximately five months to see a gastroenterologist, once initial treatments failed for the rectal bleeding catherine was experiencing. supplied

what was it like seeing this mass on the camera and realizing what you were looking at?

at the appointment [the gastroenterologist] was chatty at first, and then she started doing the procedure and her mood changed. she just kind of went quiet. at the same time, i was looking at the screen and i could see this ugly looking thing, but what i noticed was her mood-shift.

the whole thing feels like, i want to say a dream, but it was more like a nightmare. you know that feeling where you’re just kind of floating through? i knew something wasn’t right, but i guess i was in shock.

my husband and i were ten weeks pregnant at the time. so, right away we were wondering what it meant. the doctor said it could be early stages where all i would need is surgery to cut the area out and that i could potentially go through surgery with a pregnancy. but i also could need treatment, which would change things.

i had to wait for scans, an mri and ct and then a full colonoscopy [before a diagnosis is given a stage]. we knew it was cancer, but we didn’t know how bad.

it took about two weeks to get the results — it hadn’t spread to other areas, which would have made it stage 4. but it was really advanced locally, and involved some lymph nodes, which meant it was a stage three.

how did it feel to get that news?

my surgeon is one of my favourite people ever. right away, i just clicked with her. she was comfortable and a safe place for me. she said, ok, we can rule out stage 4 right away. it hasn’t spread to other organs. so i thought, that’s great. and then she said that it was locally advanced, but we’re still going for a curative treatment. once she said it like that, i was thankful.

catherine’s last treatment was in june 2020. her and her husband dan have raised more than $14,000 for the bc cancer foundation. supplied

what was the treatment for colorectal cancer?

at that point i was still pregnant. there were some doctors that had a bit of hope, but with the stage 3 diagnosis the first treatment was 25 rounds of chemo and radiation together. right there with the radiation, you can’t keep the pregnancy. so that was kind of our confirmation, but i think i knew already that i wasn’t comfortable keeping a pregnancy with all the scans [i had gone through at that point]. a ct scan and an mri, all on done on my pelvis and abdomen.

we did freeze some embryos successfully, which was amazing. it was really good for us because immediately we were planning for the future.

then i did 25 rounds of chemo radiation and a bowel resection. i had an ileostomy bag, and after six months of more chemotherapy, i had the ileostomy reversed.

what was going through chemo and radiation like?

radiation was five days a week for five weeks. you get pretty comfortable going there after the first week because it’s not that’s scary once you’re in the routine.

i had to start chemo at the same time, and i was afraid of that, whether i was going to get sick or lose my hair.

what were the side effects of treatment?

my cancer is not glamorous at all. it’s one that people don’t love to talk about the symptoms and side effects because it’s not very pretty. and that’s why i did decide to just put everything out there — because you wouldn’t know. the rectal bleeding was my first real symptom, and i was super embarrassed to even go to the doctor. i was like, what are they going to do to? check me out? that’s so weird.

when you get radiation to a certain area, it breaks down that area. so bowel radiation was hitting everything in the pelvis and abdomen. it mostly affected my bowels, so i lived on imodium for about four weeks. then there’s the bowel cramping that goes along with it. some people get way worse side effects than that, but that was my main one. and then there were some burns [from the radiation].

and because my ovaries were in the radiation field, i am now in menopause. when people tell you about hot flashes — you know, my mom or my mother-in-law would talk about their hot flashes i would say, oh, whatever. but they were serious. it’s like a fire lights within you and you just radiate heat.

where are you now in terms of your treatment?

the ileostomy reversal was my last step in treatment, technically, and that was in june 2020. so the whole thing from diagnosis to completing treatment was a just over a year.

i did take a leave [from work] the whole time, and i went back in october 2020. i wanted to give the treatment my all instead of trying to juggle too many things.

with this type of cancer, it’s five years until you’re considered in remission. i’m at about two years and nine months of showing clear scans. they call it ned, or no evidence of disease, and that doesn’t mean remission, but it does mean that there’s no signs of cancer. i get scans annually and blood work done every six months now.

i’ll have scans annually for five years, and colonoscopies too. those will be, i think, for the rest of my life, a minimum of every three years.

what is life like now? what do you do in your daily life that brings you joy?

right now, we’re working on our fertility journey. amazingly, you can still carry a child even though you’re technically in menopause. my fertility doctors are working with us to try an embryo implantation. it’s a matter of giving the right hormones and then [the pregnancy] kind of sustains itself. should it not work we’ve become comfortable with the idea of a surrogate, but we’re going to give this a try first. it’s different than life would have been, but i don’t dwell on that.

otherwise, i’m an accountant. january to april we’re in busy season, so i’m working long hours.

in my daily life, i love to exercise. i got a dog after my first surgery, and he’s such a big part of my life. my husband and i always go on adventures together too. it’s been the two of us for so many years, so we always find fun things to do.

catherine and her husband dan have raised more than $14,000 for the for the bc cancer foundation.

readers interested in learning more can check out the canadian cancer society and colorectal cancer canada.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.

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what it feels like: colorectal cancer 'is not glamorous at all'

there were other signs, like bloating and abdominal discomfort, but it was the rectal bleeding that led catherine perka to a gastroenterologist and a cancer diagnosis: 'the whole thing feels like, i want to say a dream, but it was more like a nightmare.'

what led to your colorectal cancer diagnosis?

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what was that like, knowing that something is clearly wrong but then having to wait five months for an appointment?