The cancer no one wants to talk about

My colonoscopy/endoscopy companion wants to remind you to get screened at 45, or earlier if you have concerning symptoms.

I want to preface this by saying that this post is good news. I’m not burying the lede on something so serious.

A few years ago, I experienced some significant gastrointestinal changes. I won’t go into the details, but I will say that I’ve been diagnosed with IBS since college (also with visceral hypersensitivity since a really bad gastroenteritis infection a little over ten years ago). IBS is a diagnosis of exclusion that basically means that my GI tract doesn’t have any inflammation, just a functional issue that is occasionally unpleasant but, by and large, harmless.

However, it shares some symptoms with colorectal cancer, which is much less harmless. I always knew I wanted to get a colonoscopy again before 40, rather than waiting for 45, which is when doctors recommend screenings for those with average risk for colorectal cancer. People have been getting colorectal cancer younger (ex: Chadwick Boseman and James Van Der Beek), and it tends to grow faster when it hits younger. My other concern was that my reliably erratic but harmless symptoms might mask something much less harmless.

The key in assessing your own erratic symptoms is in the patterns. My IBS has been, as I said, reliably erratic for two decades. Then things got less reliable, with a flare-up lasting 13 months instead of 3-4 at most (more typical for me). Now, there were some significant life changes at the time, not to mention that I’m simply getting older. However, changes in GI patterns is a key symptom to watch out for.

But I waited. I waited because I assumed I was going to get a job in the new year of 2024, so I’d dropped my health insurance. I waited a year without health insurance and unable to get a job before deciding I didn’t want to wait anymore. If something was wrong at my early age, by the time you have symptoms it’s probably already approaching advanced. I’d somehow deal with the problem of paying for treatment. If something wasn’t wrong, at least I’d have peace of mind, because at this point, I could no longer convince myself I was too young for what I was afraid of.

I talked to my nurse practitioner, who pointed me toward ColonoscopyAssist, which allows those without insurance or with bad coverage to set up a colonoscopy appointment out of pocket without having to get a referral to a gastroenterologist first. It’s expensive, around $1700 for the colonoscopy alone, but before 45 and officially covered screenings, it can actually be less expensive out of pocket than with poor insurance coverage. I set up the colonoscopy/endoscopy appointment for the end of March. (I have GERD and some stomach issues, hence the endoscopy. GERD can cause esophageal cancer due to constant inflammation from the acid reflux, so I’m trying to keep an eye on that, too.)

Prep was predictably unpleasant, although when you already have IBS, it’s not intolerable. The weeks of worry was worse. I was living with Schrodinger’s cancer. Usually I’m afraid of not waking up from anesthesia. This time, I was worried about waking up to bad news. I tried to prepare myself and discovered that knowing you can get the bad news doesn’t really prepare you. Part of your brain will always think it can’t happen to you, even if you know it can. It’ll always be an emotional shock, even if it isn’t an intellectual one.

I brought a small stuffed tiger with me to the procedure, because giant pandas are frowned upon and won’t fit on the hospital bed with me. The procedure is unpleasant to think about, but it’s significantly more pleasant to undergo than the prep, because you’re under the whole time.

After the procedure, I woke up groggy, kind of drunk, but I recovered pretty fast. My dad was there to bring me to the procedure and take me home, and he looked over the printouts with me prior to the gastroenterologist arriving, so I already had an idea of the relatively good news she was going to share.

My gastroenterologist informed me that she found some gastritis and a hiatal hernia in my stomach, which was expected but nothing to be concerned about. Then she said she found three polyps in my colon, all within normal range, and they appeared benign. She removed all three, but one of them had been on the large side of normal and had to be ablated, so I had to be careful exerting myself for a week. My visceral hypersensitivity means that I felt it more than the average person.

(You usually don’t feel your viscera, but the nerves in my colon are overactive, although not nearly as much as they were ten years ago anymore, thank goodness. In the initial months, it literally felt like organ failure, no exaggeration. That was when I got my first colonoscopy/endoscopy. Now my colon is just kind of…there and occasionally aches, because your viscera don’t have a lot of sensory nuance. If it feels anything, it’s mostly variations on pain.)

As of this week, pathology has officially confirmed that the polyps are hyperplastic and utterly benign. The relief that I felt from my gastroenterologist’s assessment after the procedure and after the official pathology assessment cannot be overstated. After the procedure, I had my dad take me to Braum’s for a chocolate shake in celebration (and to break the prep fast).

I am an anxious person, a worrier by nature, but I have a slew of ways that I deal with it by now. I’m pretty good about knowing when to wait and see and when to act, even if I don’t always have confidence in myself in that regard. I was right to advocate for my colorectal health, given the givens. I was right to be concerned and to seek out screenings, especially at my age, with the potential for my health issues to lead to dismissing bigger health concerns, with a family history of colon cancer (from not doing the screenings) and polyps, with changes in my gastrointestinal habits (no red flags, but a bunch of yellow flags). Just because the colonoscopy confirmed that my new problems are probably variations of old problems doesn’t mean my concerns weren’t valid.

I have one more specialist to see regarding different problems (and perhaps some of the same). I’ve set my appointment for next month. This specialist is fortunately covered by my bad insurance. There’s still some potential for bad news here, but it’s not as likely.

Changes in gastrointestinal habits are embarrassing, but they’re a major yellow flag in the realm of colorectal cancer, and as a friend says, your body’s warranty runs out at 35. Getting a colonoscopy is low stakes (if pricey) and more important than ever. Even if you don’t have any issues, you should absolutely get screened at 45, if not sooner. With the age of colorectal cancer incidence lowering, I’m surprised that the recommended screening age hasn’t gone down yet. Don’t let mortification or reluctance to talk about your gastrointestinal habits keep you from advocating for your health. If you don’t get it early, colorectal cancer is one of the easiest cancers to prevent.

Here are early warning signs of cancer (that share some symptoms with IBS and inflammatory bowel diseases): [Reference]
– Persistent change in bowel habits
– Narrow or pencil-thin stools
– Diarrhea or constipation
– Blood in the stool, rectal bleeding (blood may appear as bright red blood or dark stools)
– Persistent abdominal pain or discomfort, such as cramps or bloating
– Feeling that your bowel doesn’t empty completely
– Unexplained weight loss
– Fatigue, tiredness, or weakness