May 15, 2024 – Despite encouraging drops in overall colorectal cancer rates in the past 2 decades, one group stands out as an exception: Americans younger than 45. 

Colorectal cancer cases increased a whopping 333% among 15- to 19-year-olds and 185% among 20- to 24-year-olds from 1999 to 2020, according to new research being presented at Digestive Disease Week (DDW) 2024, a major medical conference in Washington, DC. 

As high as those percentages appear, the number of people affected at these ages remains small compared to rates in Americans 45 and older, said Loren Laine, MD, professor of medicine (digestive diseases) at Yale School of Medicine, who co-moderated a news briefing previewing the research.

“The trends are alarming [but] the actual numbers of colorectal cancer cases among children and teens are not high enough to suggest widespread screening,” agreed lead investigator Islam Mohamed, MD, an internal medicine resident at the University of Missouri-Kansas City.

For example, 1 out of every 333,000 15-to-19-year-olds developed colorectal cancer in 1999. Colorectal cancer became more common by 2020, when 1 out of every 77,000 teens developed it.

Colorectal cancer is a major cause of cancer-related death in the United States. It currently ranks third in terms of new cases and cancer-related deaths once some skin cancers are excluded, American Cancer Society data indicates. 

Some Risk Factors Can Be Changed

The colorectal cancer rates in younger people “have been consistently rising. It might be related to the environmental factors, lifestyle factors, and genetic factors as well,” Mohamed said. “It also might mean that we are doing better. Maybe we’re screening patients more, and maybe we’re doing a greater job of picking patients who are at high risk of colorectal cancer in the younger population.” 

There are ways to help lower your risk of colon cancer, including weight loss. 

“I think adopting a healthy lifestyle would be a great approach to curb the rising incidence of colorectal cancer as we saw metabolic syndrome is a big [factor].” Maintain a balanced diet, engage in regular physical activity, and maybe limit alcohol consumption, Mohamed said.

The U.S. Preventive Services Task Force lowered the recommended age for colorectal cancer screening from 50 to 45 in 2021. Mohammed suggested more targeted screening for people under 45 at higher risk. 

“I think also staying informed about the rising incidence and the latest research and recommendations in terms of colorectal cancer prevention and screening will be really, really helpful.”

If you’ve become a caregiver for a family member or friend with schizophrenia, it’s tough to go it alone. The demands on your psychological and physical well-being, and on your personal life and finances, can be heavy.

“A lot of caregivers experience uncertainty about what the future will look like, not just for their loved one but for themselves,” says Christine Crawford, MD, MPH, associate medical director at the National Alliance on Mental Illness (NAMI).

“All their expectations about holding a job and relationship kind of get shifted after the schizophrenia diagnosis. It’s a period of adjustment.”

But you can tap rich resources of information and support during this period of adjustment. You just need to be willing to ask and know where to look.

Education About Schizophrenia Caregiving

“It’s often difficult for caregivers to have a good appreciation of what the schizophrenia diagnosis is all about, to get past their own preconceived notions,” says Crawford, a Boston-based psychiatrist. “So it’s important to start off by educating yourself about the condition and what (caregiving) support is all about.”

You might start with a trip to a public or medical school library. Or visit the websites of mental health and caregiving advocacy groups. Some you might try:

• The Schizophrenia & Psychosis Action Alliance offers materials in print, video, and presentation formats about schizophrenia and psychosis. They even have a schizophrenia caregiver toolkit.
• NAMI has lots of videos and other materials on schizophrenia, an eight-session YouTube “NAMI Family-to-Family Program” that helps caregivers, a helpline, and online discussion groups. 
• The Family Caregiver Alliance has a page with resources on caregiving in general.

But don’t let your learning begin and end with what you read, Crawford urges. If your loved one agrees, go with them on some doctor visits. You can learn more about their treatment plan and develop a bond with their mental health provider.

And before you make assumptions, ask the person you’re helping about their symptoms, experiences, emotions, and ambitions, she says.

“Don’t challenge the loved one about the realities of their symptoms. Ask how they are experiencing schizophrenia and get to the emotional component,” Crawford says. “It can be more helpful for the caregiver to learn from the loved one than from a book.”

Getting Help From Family and Friends

Many primary schizophrenia caregivers feel guilty that they can’t handle the job alone. But if you can get past any mental blocks about seeking help, you may find valuable allies and a support system.

A few of the ways other friends and family members can help:

• “Respite care” — giving you time to recharge your batteries by going to the gym or a movie, a walk in the woods, or whatever helps
• Running errands like grocery shopping
• Driving your loved one to doctor’s appointments or picking up your kids from school
• Paying the household bills
• Doing online research into organizations that offer financial help to families with schizophrenia

“I recommend that caregivers write down a list of all the things that are hard for them to get done in a week and then ask if family and friends are willing to take them on,” Crawford says.

That said, be aware that it’s sometimes hard for friends and family members to be consistent through the worst of schizophrenia.

Find a Caregiver Support Group

Over time, Fabos became a volunteer and speaker for schizophrenia-related causes. She recently helped start a chapter for the Schizophrenia & Psychosis Action Alliance (S&PAA) in her home county. She also launched a caregiver support group called Families For Care that now boasts more than 800 members worldwide.

“Joining a support group is the biggest lesson I’ve learned,” she says. “You can get the resources you need in the right support group. There will be someone in the group where, if they haven’t been through the exact same situation you have, it’s close enough.”

In Fabos’s group, she says, caregivers not only get a sounding board, but often get help from nearby members with daily tasks.

Along with searching the internet and social media outlets, you can find a nearby support group by:

• Registering for one through S&PAA
• Using the NAMI Connection support group search engine
• Messaging through Mental Health America’s Inspire schizophrenia board

Crawford says it’s a good idea to join a schizophrenia or mental illness caregiver support group even if you enjoy a great support network of family and friends.

“If you encounter a bump in the road with your loved one, the support group can say, ‘I know it’s difficult now, but hang in there. It worked for me, and I strongly believe it can work for you,’” she says.

 “And if you go to a support group and it’s not a good fit, it’s OK to need to look for another. It’s not a one-size-fits-all approach.”

By Dawn Brown, Director of the National Alliance on Mental Illness HelpLine Services, as told to Danny Bonvissuto

My son, Matthew, was rare in that he was diagnosed when he was 8 years old. Most often, schizophrenia manifests in the late teens or early 20s.

At 18, he had a psychotic break and required hospitalization. Eventually he found treatment that was effective, but it took quite a while.

Once we found something that seemed to address his symptoms on several levels, he became treatment-compliant, which means he’s taking his medication on schedule. But medication is a small part of the treatment plan. He’s also keeping his appointments with his psychiatrist and therapist and doing what he can to maintain his overall health and wellness.

He’s 38 now. He enjoys his life. He has friends. He has places he goes during the day that keeps him engaged with others. But it’s been a journey.

The most difficult part is when someone first begins to experience symptoms. It’s rocky. There will be many ups and downs. Over time it does get better. An engaged, informed loved one is often the best indicator of the outcome for a person with schizophrenia.

‘The Perfect Storm’

Very often when people begin to have symptoms, or when they have full-blown psychosis related to schizophrenia, they resist treatment. It’s the perfect storm. You have young adults coming into their own, they’re experiencing symptoms, people are throwing around labels, and they’re resistant to having a serious mental health condition.

For a parent or caregiver, this is a very difficult situation. They’re adults at 18 and can make decisions about going to the hospital or taking medication. As a parent, you lose the power to make them do these things.

Listen and Empathize

In terms of getting someone to engage in treatment, we advise family members to listen. Don’t just hear, but listen to what their experience is. Their reality is different than most people’s reality. I wouldn’t say you should agree with what they say if it’s delusional. But you can empathize.

If they think someone’s out to get them, you can say, “That sounds very scary. You must be very worried.”

At First, Treatment Is Trial and Error

A lot of people stop treatment because honestly, the medication available for schizophrenia isn’t always effective. It can have horrible side effects and people lose hope, so they stop.

One of the side effects is obesity. If you have a young woman who’s being told she needs to take this medication and she gains 30 pounds in 3 months, she wants to stop. The voices have stopped. But within a week or two the voices are back and the cycle starts all over again.

It’s common to try different medications at the beginning of treatment. That was true of my son as well. He tried four or five antipsychotics that targeted the more active part of schizophrenia — the hallucinations. But when he found one that worked, it was almost like a light switch turned on in his brain.

Matthew has obesity and some other unpleasant side effects. But he also has the awareness that he needs the medication and that the side effects aren’t as bad as the psychosis itself. That’s a very mature place to be.

I offer people hope to keep looking and don’t settle. Always work in conjunction with a psychiatrist. And get the person with schizophrenia to sign Health Insurance Portability and Accountability Act (HIPAA) consent so the psychiatrist can work with other mental health professionals. It’s very likely that, over time, if you’re persistent in seeking treatment options, you’ll find something that works.

Explain What The Medications Do

People with schizophrenia should be fully aware and informed about anything they put in their bodies. Part of them being a participant in their treatment is understanding the pros and cons of any type of medication and how you hope it will affect them.

Positive Reinforcement

Once the medication has become effective and the symptoms have receded, you can have a conversation about it. “Remember last month when you were hearing voices and couldn’t sleep? Remember how scary and awful that was? Now that the medications are working, it’s a good thing. A really important step.”

It’s positive reinforcement. You’re reaching them on an intellectual level about what they’re doing and what results they’re seeing. They can think through cause and effect: I like the effect, so I’m going to keep doing this.

Taper Treatment if It’s Not Working

It’s never a good thing to abruptly stop treatment for schizophrenia. If they’re unhappy with their side effects, or if the medication isn’t effective, impress the importance of working with their psychiatrist.

These are powerful medications that change the chemical balance in their brain. You might have to taper down one medication and work another into the regimen so your blood levels are sufficient. You want to avoid extremes, and don’t want to be completely knocked out.

Respectfully listen to why they want to stop and look for alternatives. There are a lot of combinations of options out there. It takes patience with the process to find the ones that work. They don’t work immediately: It takes a couple of weeks. Talk about what will be least disruptive to their life.