Raising Awareness: A Q&A With the Colon Cancer Foundation

Cindy Borassi: It still remains a cancer that many people are very uncomfortable talking about. In fact, we have a gentleman who we're working with on a campaign this year who just told us a really poignant story about one of his best friends. The friend knew he had cancer, stage four colon cancer. The man we're working with knew his friend was battling a form of cancer, but the friend never told him what type of cancer it was because he was too embarrassed. Not because he had cancer, but specifically the type of cancer.

And so that still speaks to, that in this day and age, people are still embarrassed by this disease because of the part of the body it affects: There are two parts to colorectal cancer—colon and rectal cancer—but especially rectal cancer.

Ed. note: CCF has a separate site dedicated to screening and how to spread the word.

What we often say is that colonoscopy is the gold standard because you can kill two birds with one stone. You go in and you're doing the screening, but you're also removing the polyp—the pre-cancerous polyp or the cancerous polyp—right there. So that's what makes it the gold standard. Whereas other forms of screening—stool DNA or the FIT (fecal immunochemical test) or FOBT (fecal occult blood test)—it's the first step. So you're doing that test and if you get a positive response, you're still having to go in for a colonoscopy.

But our motto across the colon cancer spectrum is "the best test is the one that gets done." We really want people to know this because there's a very large majority of the population—we know from watching the trends in the statistics over the last decade—that are never going to opt for a colonoscopy on day one. It's just never going to be their first option for a number of reasons. It can be myths. It could be access, it could be having someone to be able to drive them because they have to be sedated. It could be financial. And so there are all sorts of reasons why someone would decide not to go that route first.

There are so many options other than colonoscopy. And so we encourage the general public to have a really honest conversation with their doctor about what the best option is for them.

Well, I like to think that it came from us. I know it sounds pretty brazen, but it's honest. We were the foundation in the space that started hosting a conference focused on the fact that colon cancer is affecting younger and younger Americans. Years ago, we started noticing this trend, along with others in the space, but we started hosting this summit eight years ago, and along with that we started lobbying the American Cancer Society. They actually reset their guidelines four years ago. And that was in large part due to meetings that we hosted with them, as well as summits that we co-hosted with them to bring in specialists to look at the data to see when would it be most beneficial to start screening.

After really careful consideration of the statistics and the trends and the number of individuals affected under the age of 50 and the trends that we were seeing—it's been really happening since the 1990s, this trend of increasing incidence in those under the age of 50—but it took some time to convince them that there was a worth and a value in moving that screening down to 45. Once we got the American Cancer Society on board, it's just a matter of waiting until the USPSTF then goes through their own process of reanalyzing the data, and that's what they then did.

And thankfully, in 2021, in May, they changed their guidelines to match, which we're really excited about.

Even before they changed the guidelines down to 45, we were noticing a disturbing trend that we were losing ground in the 50-to-74 age group, so mortality was going up in that group and screening was going down. It was a very disturbing trend that everyone was noticing on a national scientific level, and that happened before these screening guidelines changed.

What we believe it's telling us is that there's a slow uptake about when it's time to get your screening. You're 50 years old, it's time to get your colonoscopy, so by the time they're actually getting in and getting diagnosed, they're being diagnosed at a later stage. So what we've been talking about in our summit for eight years, is let's start having earlier conversations that lead to on-time screening no matter what.

So if you're a high-risk individual, with a family history, your screening should actually start earlier than an average-risk person. And if you're an average-risk individual—no family history and no symptoms—your screening should now start at 45. But our conversations really need to start earlier so by the time someone is 45, they're ready to start the process.

The one thing that we really stress is that colon cancer, it's an equal opportunity killer. And at this point, it's not discriminating by age either. It used to be, you know, there was this myth that it was this old white man's disease. So we're really trying to dispel myths by having conversations with everyone at any age and saying, "If you have symptoms, especially in the earlier ages, we're finding that it's a really rapidly progressing disease."

And the majority of those cases aren't diagnosed until the late stages, which we all know have a much poorer prognosis. So what we're really trying to stress is, if you have the symptoms and signs, you need to see a doctor and you need to insist on getting the proper diagnosis no matter what your age.

For example, blood in the stool is not normal no matter what your age, so if a doctor tells you it's a hemorrhoid or an ulcer or stress, the only way you know is to get it thoroughly checked out.

Many patients are in the prime stage of their life and their reproductive years, unfortunately, and we've heard many, many stories of situations where fertility preservation is never discussed and they go into treatment, chemo or radiation, and then they've lost the ability to have a family simply because the conversation was never started before they went into treatment.

This goes for both men and women, by the way. So that's definitely something, through our summit, we bring in specialists every year to talk about this life-impacting conversation. It doesn't have to take a long time, but just to start and have the opportunity to have the conversation, because they don't necessarily even know they have to have it until it's too late.

One is definitely to have an awareness of your body and the symptoms and signs of colon cancer. Be on the lookout and if you sense anything not normal, have a conversation with your doctor and really insist on getting answers. Be your best advocate.

Dangi-Garimella: I was going to add family health history to that list. Being aware and talking to your aunts, uncles, cousins about what's going on with their lives is extremely important.

Borassi: Know your family history of all diseases. This should cover entire medical histories. Let's not be afraid to talk to our families about their health, about our health. So, for example, if you go in for a colonoscopy and, Mike, if they had found a polyp, that would have actually—if you had sons and daughters—it would put your sons and daughters at higher risk. It would affect their screening protocols. But information often isn't relayed to family members.

And another thing is, for example, there are over a million people walking around the United States with the genetics of Lynch syndrome, which is one of the genetic syndromes for colorectal cancer. They don't know it. So if we were just doing a better job of talking to our family and then also insisting on, once a patient is diagnosed, going through genetic testing.

So the other thing is if a patient is diagnosed, insisting on the tumor profiles and genetic testing, to understand exactly what we're looking at.

This year we're running a campaign. If someone makes a donation, they can get a free test kit. It's being run through our Let's Get Screened site. So they can either make a donation and get the test kit for themselves or they could get the test kit and hand it to a loved one who's 45 and hasn't been screened. So we would love to raise awareness of that campaign. Our goal is to help 10,000 people get screened.