Battling Two Deadly Diseases: My Crusade to Lower the Colon Cancer Screening Age

During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Anna Payne, an adult with CF.

Did you know people living with cystic fibrosis (CF) are 5-10 times more likely to get colon cancer? Yeah, neither did I — until I was diagnosed with stage 4 colon cancer. That’s one of the reasons I’m so upset. 

As if fighting one deadly disease wasn’t enough, now I am battling two. CF and colon cancer rage against my body mercilessly, in tandem, without reprieve. It’s infuriating to know now what I didn’t know before: This outcome could have easily been avoided with early colon cancer screening.

I was 34 when I was diagnosed with colon cancer (I’m 35 now). Currently, the standard recommendation for people with CF is to undergo their first colonoscopy at age 40. I had no family history and no genetic markers to point to colon cancer, so I planned to follow the CF recommendations and get screened when I was 40 years old. 

It’s frustrating that colon cancer is one of the most preventable cancers – if caught early enough. If you catch it late, it transforms into the second most deadly cancer. You’re now in a fight for your life. 

It doesn’t help that colon cancer hides in the shadows. It typically manifests as a silent cancer with few or no symptoms. If a person with CF does have symptoms, they often mimic the symptoms of CF. The unfortunate truth is that it is nearly impossible to detect colon cancer in someone with CF without screening. 

How many people are walking around with colon cancer right now who don’t know it? That’s not just scary, it’s unconscionable — because it doesn’t have to be this way. 

My story exposes a gap, a failing of the system. I wish I could claim to be a rare exception, but both data and anecdotal evidence tell me I’m far from alone. Recently, I learned of a 26-year-old with CF who passed away from colon cancer. I’ve heard stories of many others with CF who have similarly passed away at even younger ages due to colon cancer detected too late. It’s a senseless tragedy.

After learning of a person with CF who is 26 years old and has stage 4 colon cancer, as well as another woman in her early twenties who passed away in 2018, I believe the recommendation for colon cancer screening for CF patients should be lowered from the current age of 40, regardless of transplant status. 

Next time you go to the doctor, I’m urging you to ask your doctor for a colon cancer screening. Not just ask – insist. I know, I know, it’s not particularly fair or sustainable to put that burden on CF patients, but it’s a holdover that can save lives now. Your doctor might push back, but don’t take no for an answer. Make noise! These conversations need to happen face-to-face, between each person with CF and his/her/their doctor. The more of us who push for a screening and demand our voices be heard, the greater the chance of the general recommendations changing. 

If this sounds too small and incremental, you’re right. But that’s how the world changes.

CF doctors and care centers use the guidance set by medical experts and regulatory agencies to determine when to screen CF patients for colon cancer. And, even with these guidelines, not all CF doctors are aware of the well-known elevated risk of GI cancers among their patients. New guidance may also mean that eventually, insurance companies would pay for the screening if you’re under 40. 

Early screening means early detection of an otherwise hidden cancer. Early detection means finding cancer in earlier stages, which dramatically increases the possibility of effective treatments or even cures. Treatments and cures mean saving lives, lives that matter. Lives like mine. 

I’m not advocating just for me. We found my colon cancer in the latest stage possible. Now I am going to fight two deadly diseases and try to win against the odds. This is my story, but it does not have to be yours. Together, we can make sure it’s not, with increased awareness and early colon cancer screenings for all adults with CF.

UPDATE FROM ANNA AS OF MARCH 2024: I am lucky to still be here almost three years later. I still go to chemo every two weeks and get scanned every three months, but I have decided that I won’t let CF or “Kancer,” as I have dubbed it, stop me from pursuing my dreams.

Special thanks to Vertex Pharmaceuticals, Inc. for their tier 1 sponsorship of our CF Awareness Month campaign.