Flush those colonoscopy fears

Just a few weeks af­ter her 17th birth­day, danielle ri­p­ley-burgess was di­ag­nosed with stage 3 colon can­cer. To­day, at 30, she’s a wife and mother do­ing what she can to get peo­ple talk­ing about what she once feared.

The Star Malaysia - Star2 - - LIVING - By LISA GU­TIER­REZ > TURN TO PAGE 20

SHE couldn’t tell her mum that some­thing was wrong be­cause it was way too em­bar­rass­ing.

She didn’t even like to walk down the toi­let pa­per aisle at the gro­cery store.

So when Danielle Ri­p­leyBurgess, 30, of Lee’s Sum­mit, Mon­tana, was in ju­nior high school and be­gan find­ing blood in the toi­let af­ter go­ing to the bath­room, “I didn’t say any­thing about it for a long, long time. I was mor­ti­fied.”

When she fi­nally did, she and her mum, at first, did their own re­search on the In­ter­net and fig­ured that be­cause Danielle was so young, the prob­lem had to be some­thing be­nign, like haem­or­rhoids. Wrong. Just a few weeks af­ter her 17th birth­day in 2001, she was di­ag­nosed with stage 3 colon can­cer, go­ing from prom plans to hos­pi­tal stays in the blink of an eye.

To­day, at 30, she’s a wife and mother run­ning a mar­ket­ing firm – Semi­colon Com­mu­ni­ca­tions, wink, wink – and do­ing what she can to get peo­ple talk­ing about what she once feared.

Gut in a truck

She’s not above us­ing props, ei­ther. Big ones. In early De­cem­ber, she ar­ranged to have a 12m-long crawl-through model of a colon trucked into town.

The mes­sage? Be­ing afraid to talk about what hap­pens in the bath­room could kill you.

Col­orec­tal can­cer is the sec­ond-most deadly can­cer, but the ma­jor­ity of cases are pre­ventable with the use of a com­mon screen­ing pro­ce­dure called a colonoscopy.

Pre­can­cer­ous growths found dur­ing a colonoscopy – rec­om­mended ev­ery 10 years be­gin­ning at 50 – can be re­moved on the spot. That’s im­por­tant be­cause those growths, or polyps, can stick around in your colon for years and be­come full-blown can­cer.

“This is the only sit­u­a­tion in all of medicine where the test used to screen for a can­cer is also the method for pre­vent­ing that same can­cer,” said Larry Geier, a ge­net­ics on­col­o­gist at the Univer­sity of Kansas Can­cer Center and one of Ri­p­ley-Burgess’ doc­tors.

“In all other sit­u­a­tions – mam­mo­gram, Pap smear – the screen­ing test may be ef­fec­tive for early de­tec­tion but pro­vides no abil­ity to pre­vent the can­cer it­self.”

And yet, peo­ple fear the colonoscopy. Sta­tis­tics show that only half of Amer­i­cans older than 50 have ever had one, or any other type of col­orec­tal can­cer screen­ing process.

The ick fac­tor is high. Here are the ex­cuses pa­tients give Geier.

> “I don’t like the idea of a doc­tor stick­ing a scope up my rec­tum. I am too mod­est for that.”

> “I hear the prepa­ra­tion for the test is very dif­fi­cult, and I don’t want to do that.”

> “I am not hav­ing any symp­toms, there­fore I don’t have can­cer.”

> “I just don’t have time for that.”

“I have heard each of th­ese rea­sons too many times over the years, and none of them are worth tak­ing the chance, or what I con­sider to be play­ing ‘ Rus­sian roulette’ with your colon,” Dr Geier said.

Only 10% of all peo­ple di­ag­nosed with the disease are younger than 50.

But while cases of colon can­cer among adults 50 and older are fall­ing, rates among younger adults like Ri­p­ley-Burgess are ris­ing, ac­cord­ing to the Colon Can­cer Al­liance.

“There is def­i­nitely a trend to­ward younger age at the time of di­ag­no­sis of colon can­cer over the last two decades,” Geier said. “Changes in diet, bet­ter screen­ing and more aware­ness of early symp­toms may each have a role, but still don’t pro­vide ad­e­quate ex­pla­na­tion.”

What hap­pened to Ri­p­leyBurgess was rare. She was di­ag­nosed with colon can­cer at 17 and again at 25, when all but a foot of her large in­tes­tine had to be re­moved.

“I have to be care­ful with what I eat, when I eat.” No big chilli dogs for lunch, for ex­am­ple. “It’s nor­mal for me now.”

It was her bad luck to be, Geier put it, “ge­net­i­cally pro­grammed” to de­velop colon can­cer at such a young age. She has a ge­netic trait known as Lynch syn­drome, which af­fects about one in ev­ery four to five Amer­i­cans and is largely un­der­diag­nosed.

Colon Club

Af­ter her sec­ond di­ag­no­sis, Ri­p­ley-Burgess hap­pened upon the na­tional non-profit Colon Club, a group ded­i­cated to rais­ing aware­ness of col­orec­tal can­cer in out-of-the-box ways. Club founder Molly McMaster was di­ag­nosed with colon can­cer on her 23rd birth­day.

Five years ago, Ri­p­ley-Burgess posed for the club’s Colon­dar, a cal­en­dar fea­tur­ing colon can­cer sur­vivors younger than 50. She was Miss Oc­to­ber 2009.

She now runs the club’s web­site and uses so­cial me­dia to talk about colons with the pub­lic. She has her own lessons to share, like this one: don’t sub­sti­tute In­ter­net re­search for a med­i­cal di­ag­no­sis.

“That’s def­i­nitely a piece of my story as well as oth­ers,” she said.

“While it’s good to be in­formed, don’t skip go­ing to the doc­tor be­cause you Googled.”

Those are big words com­ing from some­one who, as a lit­tle girl, was dis­gusted at the thought of some­day mar­ry­ing a boy and – ewwwww – “poop­ing” in the same house.

“This is a very com­fort­able sub­ject now,” she said.

Colon can­cer warn­ing signs in­clude:

Blood in the stool (fre­quently not vis­i­ble to the naked eye), a change in stool habits, a grad­ual de­crease in the size of the stool, in­creas­ing ab­dom­i­nal pain, un­ex­plained weight loss.


Open­ing up: Colon can­cer sur­vivor danielle ri­p­ley-burgess supports an or­gan­i­sa­tion that takes an ed­u­ca­tional ex­hibit on colon can­cer, on the road. — MCT pho­tos

a 12m-long in­for­ma­tional model of a colon that young and old can crawl through.

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