Why People Aren’t Screened for Colon Cancer

Is fear holding you back from a potentially lifesaving screening test?

Fear was the No. 1 reason older adults gave to explain why they hadn’t gone in for a colonoscopy to screen for colon cancer, a new report says.

People who avoided the test — even though they were good candidates because of their age or at heightened risk because of family history — were scared, pure and simple. They were fearful not just because of what they might find out from the test results, but because of the bowel preparation and the procedure itself.

The respondents gave other reasons for putting off the screening, saying they were pressed for time, didn’t have good insurance coverage or were “squeamish” or just “procrastinating.” But fear was the primary reason.

The survey was carried out as an e-mail questionnaire by the Colon Cancer Alliance, a patient advocacy group. The group queried more than 15,000 people on its e-mail list, getting a response rate of just over 10 percent.

People who responded had a special interest in colon cancer and were not a nationally representative sample. They were much more likely to have had a colonoscopy than most Americans. Most had been affected by the cancer in some way, either directly or through a family member, and some worked in health professions or were caregivers.

More than 80 percent of the respondents said they had been screened, and among those 50 and older, nearly 94 percent had been screened. (Colonoscopies are recommended routinely for all Americans starting at age 50, and at younger ages for those with a family history of the disease or other risk factors.) In comparison, only about 63 percent of all Americans ages 50 to 75 have been screened, according to the Centers for Disease Control and Prevention.

Despite evidence showing that colonoscopy saves lives from colon and rectal cancer, fear holds a lot of people back.

“People have fear, and it’s easier not to go and face that fear,” said Kelly Ackerson, an assistant professor at Western Michigan University in Kalamazoo, who has studied why women avoid Pap smear screening for cervical cancer. “It’s fear of the unknown, or maybe they know someone who’s gone through it and heard how terrible it was,” she said.

Some respondents were afraid because they had witnessed the ravages of colon cancer. “Pure fear,” wrote one person over 50 who hadn’t had a colonoscopy despite a strong family history. “My grandfather, aunt and sister died from colon cancer.” Referring to the sister, the person wrote: “I saw everything that she went through. I saw her fear, her pain, her humiliation, her sadness.”

Education can help. Some consumers may not understand that both Pap smears and colonoscopies can actually prevent cancer from developing, Dr. Ackerson said, by identifying precancerous changes and benign polyps that can be treated.

Many also expressed fears about the preparation, which involves eating no solid foods and drinking only clear liquids a day before the procedure, and then often downing a gallon of what’s called PEG solution over a four-hour period. Respondents said they “dread the prep” and were “unable to finish the liquid that I had to drink the night before…it made me nauseous.”

The Colon Cancer Alliance’s report was carried out in partnership with Salix Pharmaceuticals, which makes products to treat gastrointestinal disorders, as well as an alternative colonoscopy prep that consists of a series of tablets taken with clear liquid.

When a screening procedure gets a bad rap, the reputation sticks, said Kelly Brittain, assistant professor at Michigan State University in East Lansing, who wrote her dissertation on barriers to colorectal cancer screening. Her focus was on African-Americans, whose screening rates are lower than those of the general population. Some respondents in the survey said they “had friends who have had bad experiences,” and one wrote, “I have recently heard of at least three people who have had severe complications from a colonoscopy.”

Dr. Brittain said both physicians and family members need to talk openly about screening and encourage people to overcome their hesitation.

“Family beliefs play a large role in promoting colorectal cancer screening,” she said. “If someone had a bad experience, they’ll tell the story of ‘Oh, when Uncle Joe went, it was so terrible, they nicked him, and he had a terrible bleed.’ That information sticks around a lot longer than, ‘You know what, it wasn’t so bad; the prep was yucky, but over all you should do it.’”

For more information on colon cancer screening, see “The Times Health Guide: Colonoscopy,” which includes “10 Questions You Need to Ask About Colonoscopy.”

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Sure, the prep was yucky, but overall the whole experience was fairly easy. Certainly worth the time and energy to save one’s own life.

Dave Barry wrote a column on this subject that is both serious and hilarious as only Dave Barry can be.

He put off having his own colonscopy until his younger brother had it done and they found early colon cancer. Had his brother procrastinated the way Dave did, the cancer would not have been discovered at such an early, treatable stage and who knows what would have happened?

Better to catch it early. Fear is irrevelant. Do it anyway.

Colonoscopy a pain in the butt well worth putting up with.

Too bad the above article didn’t mention the number of people with positive tests for occult blood in their stools who avoid getting scoped.

I have had 2 colonoscopies and I won’t have another because of the PEG solution. When doctors come up with a less brutal bowel cleansing, I will reconsider.

My mother had a colonoscopy and it was not worth it. Her intestines were nicked and she bled profusely. She needed multiple transfusions and a portion of her large colon removed to stop the bleeding. She was seriously weakened by the experience. The colonoscopy was not worth it. She ultimately died of throat cancer. For individuals with no history of colon cancer in the family I would recommend against a colonoscopy because it is to risky for very little benefit.

After seeing the misery my husband endured with the prep, I chickened out. And I’m no chicken.

Since it’s obvious to everyone that this is the reason most people avoid the test, why hasn’t the medical community come up with an easier prep for the procedure?

This does not seem like rocket science to me, and even if it were, these folks are supposed to be rocket scientists!

I wish people who write stories like these were able to understand the difference between fear, and the avoidance of annoyance, inconvenience, discomfort, and expense that’s the reason many people put off having colonoscopies.

This is one test that is a total life saver if done early. Yes, the prep is yucky, but the alternative is even worse. Death by colon cancer is not fun. I got my test just in time after arguing for years with Kaiser Physicians about my being too young to need that kind of test. I went outside the system and the Dr. who did the test removed several golfball sized polyps that were precancerous. Another year and it would have been too late.

#4 johns creek: Your recommendations are simply incorrect. Colonoscopies save lives in the general population. The benefit is far greater than the risk; the fact that you happen to personally know one person who was harmed rather than 5 who benefited does not change the reality.

#3 rachel wrote: “I have had 2 colonoscopies and I won’t have another because of the PEG solution. When doctors come up with a less brutal bowel cleansing, I will reconsider.”

I’m sorry to hear that. Please bear in mind you are not doing the doctors any favors by getting scoped – it’s for your own benefit. I suspect that advanced colon cancer is more brutal than a gallon of PEG solution.

My stepfather was diagnosed with stage 4 colon cancer when he was exactly 50 years old. Prior to his diagnosis, he had absolutely no symptoms, was an avid runner, and ate a healthy diet. He passed away last fall, 1 month after his 51st birthday. Only 2 years before, he and my mother had been planning for their retirement and talking about traveling the country together. It was absolutely devastating to watch the cancer rob him of virtually any quality of life.

To those who suggest that a colonoscopy isn’t worth the unpleasant prep or risk of complications, I ask them if it’s worth the devastation of watching a loved one suffer a long, painful death because the cancer was caught too late. Most colon cancer occurs in people with no family history of the disease, and is highly treatable if caught early.

Misinformation about colon colon cancer risk abounds. Please don’t let fear prevent you or a loved one from scheduling a colonoscopy. The risks of waiting until it’s too late are far greater.

All forms of screening, especially those that are somewhat invasive, involve time, trouble and resources; they carry risks of complications, false positives leading to further testing of nothing, and overdiagnosis with possible overtreatment. The benefits may very well be worth these risks, but these risks are real and it is not unreasonable to be wary of them.

Seriously? I’m 23 and have gone through 3 scopes/flex sigs because I have ulcerative colitis. It’s seriously not that bad, and when you consider that my intestines were seriously inflamed while doing mine…people really need to stop being wimps. Is the prep pleasant? No, definitely not, but neither is a pap smear, or monthly blood testing for certain disorders, or giving yourself insulin injections. People do these things for their health anyway.

I have had surgery to remove about 8 inches of my colon due to a malignant polyp some years ago. Fortunately, I did not have to have further treatments. The surgery is something I do not want to have to go through again. But the tests I have to have more frequently since then cause me no dread and very little discomfort. Due to a medicine to relax met, I do not feel or remember anything from the tests. As I mentioned, I would much rather go through the tests than the surgery or any cancer treatments. If you want to gamble with your health, it is up to you. Just remember that living with colon cancer is very miserable until it takes your life.

To anyone commenting that getting a colonoscopy is not worth it, I have to say you do not know what you are talking about and are doing a disservice to anyone on the fence about getting this important exam done.

I had mine done after I turned 50 and the whole process was not that bad. Yes, drinking the prep fluid is not pleasant, but it is not as bad as some would make you think. I did not need to rush to the bathroom like I thought I would and had a normal night’s sleep. As for the procedure, all I remember is starting to count to ten and the next thing I knew the nurse was asking me if I wanted some toast and something hot to drink.

If your doctor wants you to get a colonoscopy, just do it.

I was having colonoscopies yearly as my father and his brother died of colon cancer. But thanks to the recession, my income has dropped dramatically. My co-pay for the procedure is $50. And the new prep would cost me another $50. The older prep, which has been discontinued because it apparently caused kidney failure, cost under $15. Make the prep affordable–easier would be good, too–and I am there.

I’m 26 years old and last summer I was diagnosed with ulcerative colitiis. I had to get a colonoscopy for the diagnosis and my doctor has advised me to get one every 7 years, and once I turn 50 to get one every 2 years since I am at a higher risk of colon cancer. If I make it to my 90’s I’m looking at two dozen colonscopies over my lifetime. WOW!

While it’s something I’d rather avoid I will never EVER skip one. Preventative screening for any disease is so important and it’s surprising and sad that so many people refuse to do it. I consider myself lucky that I have access to this kind of medical screening since so many people in the world don’t.

The worst part is the preperation process, for sure. I had to drink 8 one-cup servings of something that tasted like a lemon cleaning solution and I vomited on my last one. I only hope that in the future scientists can come up with something easier to ingest! But the procedure is a breeze, afterwards I just slept most of the day and felt fine the next day at work.

Unlike other screenings, this one carries a risk of death.

There are less risky and less disruptive methods to screen for colon cancer. If there was a real desire to get people screened, we would be using them.

Get the test, its no big deal. I was most worried about not eating for a day. The PEG seemed to help suppress my appetite. The PEG at first was not much different than water, but the more you drink, the more repulsive it seems to taste, still, cough medicine is much worse. The least pleasant part was the bowl movements, and even that was not as bad as I thought it would be, it did not make me as sore as illness caused diarrhea.

Larry

I’m a 23+ years and counting Colorectal Cancer (CRC) Survivor blogging to hopefully bring hope to others facing a similar journey.

When I was diagnosed with cancer it would have been so comforting to have someone come beside me and share their journey. Someone to tell me, “I’ve been there and here’s what I can tell you from my experience.”

I too ignored warning signs and didn’t get tested for sames reason too embarressed, scared, and finally after I was bleeding and in pain too scared not to go.

PLEASE TAKE ACTION AND GET TESTED EARLY (ask your primary for Fecal Occult Blood Test (FOBT) as I said in a recent blog post there is no recall button on cancer.

Please visit my blog at //chatwithdeedee.wordpress.com/

Although colonoscopies are justified for some individuals people need to understand the following

1. It is a fact that individuals who undergo colonoscopies have a lower death rate from colon cancer.

2. It is also a fact that there is no evidence that having a colonoscopy will extend your life.

You will die at the same age from another disease. There are some doctors who are willing to state this and openly admit that they are deeply disappointed by this medical fact.

Each individual should be given the facts and based on this make their own decision together with their doctor.

I am at risk due to a family history. I’ve had traditional colonoscopies and a virtual one. The virtual one turned up something suspicious, so I went for another traditional colonoscopy. The doctor who performed it had reviewed the virtual results and told me that he had been unable to see the area where the virtual one had found something questionable. (My insides have adhesions due to prior abdominal surgery.) When I asked him what I should do, he said I should have another virtual colonoscopy. I was unable to do that because the extremely high premiums for my medical “insurance” left me with no money to pay for another virtual colonoscopy and the “insurance” doesn’t cover it. I think it’s interesting that the doctor did not mention that he had been unable to see my entire colon when I had my first traditional colonoscopy. I wonder how many other people out there are thinking their traditional colonoscopies are comprehensive.

There are methods for screening for colorectal cancer besides the colonoscopy. there are good fecal tests that can be completed in the privacy of ones home. They are proven to reduce deaths from colorectal cancer. It the test is positive then it is followed by a colonoscopy. If you are not at high risk for colorectal cancer talk with your doctor about doing a fecal test at home to screen for colorectal cancer.

The prep is indeed worse than the procedure itself, but even that compares favorably with, say, having the flu or a bad cold. It’s not outside people’s normal experience.

Why haven’t I had a colonoscopy lately? Because my HMO doesn’t think I need one — despite benign polyps having been removed during both previous ones, and despite part of my intestine having been removed previously due to a noncancerous problem. Instead, they mailed me a poop test to be read by a computer. Saves them money. May not save my life. (I’m certainly pursuing this, by the way.)

My next-door neighbor, under care of the same HMO which is quite big in Northern California, just died from colon cancer. The HMO had bugged him to get bariatric surgery due to overweight, because statistically overweight is bad for you, and told him “some pain was normal” afterward. They certainly didn’t hound him to get a colonoscopy. He thought he was having the “normal” pain he’d been told about, not pain from something else, so he didn’t bother them with it, and died as a result.

Plus, like so much care based on overall statistics in the population rather than individual evaluation, insurance companies can’t be bothered paying for colonoscopies for people under 50. It takes a polyp 10 years to turn cancerous, I’m told, and people do die of colon cancer just after their 50th birthday because they weren’t screened up till then. Statistically, they didn’t need to be. As individuals, they sure as heck did.

I am so bullish on colonoscopies. Last summer at age 40 it saved my life. Early diagnosis of colon cancer allowed doctors to remove a malignant tumor before it spread to other organs. I will take the colonoscopy (which will be a regular part of my life) over death any day.

Whatever the reasons people have for not getting tested or resenting it, medicine needs to develop less drastic and invasive colon screening methods. Just the same way we look back through medicine and wonder why people ever put up with some things, in the future people will look back on colonoscopies and think the same thing.

No insurance, and am unemployed at 56. Cannot afford one, but plan to have the fecal occult test done.

In Europe, I have heard that colonoscopies are not routine, unless there is reason to have one. Any idea how their rates of colon cancer compare?

Honestly, even if I had insurance, am not sure I would have such an invasive test, unless there was reason to do so!!!