TWO SIS­TERS, TWO CAN­CERS

Reader's Digest (Canada) - - Front Page - BY CATHER­INE GOR­DON FROM THE UNITED CHURCH OB­SERVER IL­LUS­TRA­TION BY MERED­ITH SADLER

ONE SUNNY SATUR­DAY morn­ing two years ago, my phone rang as I was walk­ing out to my gar­den with my cof­fee and pa­per. It was my big sis­ter, Karen, from Cal­i­for­nia. “You’re not go­ing to be­lieve this,” she said. “I’ve just found out I have breast cancer.”

Un­for­tu­nately, I didn’t have any trou­ble be­liev­ing it. Not be­cause of the statis­tics: about 26,000 Cana­dian women and over 260,000 women in the United States were di­ag­nosed with breast cancer in 2017. Or be­cause Karen had al­ready had cancer. The news didn’t sur­prise me be­cause I have it, too.

Two sis­ters, two coun­tries, two can­cers. On the sur­face, our ex­pe­ri­ences were very sim­i­lar: we both re­ceived ex­cel­lent treat­ment, we had lots of sup­port, and we’re re­cov­er­ing well. But there were some im­por­tant dif­fer­ences.

MORE THAN HALF a mil­lion women around the world die of breast cancer ev­ery year, yet no­body knows for sure who will get it or why. Lots of en­vi­ron­men­tal and life­style fac­tors have been as­so­ci­ated with higher risk: how much you ex­er­cise, what you eat, how much you weigh, how much al­co­hol you con­sume and whether you smoke or have had hor­mone re­place­ment ther­apy. But the two most sig­nif­i­cant risk fac­tors are sim­ply be­ing a woman and get­ting older.

Karen is 64, four years older than me. Her three chil­dren are grown, and she lives with her hus­band, John, in a small town out­side Los An­ge­les. I live in Toronto and have chil­dren in their 20s, a new hus­band, Jim, and I run a com­mu­ni­ca­tions busi­ness.

My sis­ter sur­vived a brain tu­mour when she was 37 and hasn’t worked since. But we’re both healthy and rea­son­ably ac­tive. I have never smoked, and Karen stopped a few years ago. There’s no his­tory of breast cancer in our fam­ily, and we’ve both tested neg­a­tive for mu­ta­tions in BRCA1 and BRCA2 genes that pro­duce tu­mour sup­pres­sor pro­teins.

Ev­ery year, my doc­tor would give me a req­ui­si­tion for a mam­mo­gram, and ev­ery year, I’d find it crum­pled at the bot­tom of my bag sev­eral months later. I was al­ways too busy. I hadn’t had one since my first at age 50.

Things changed when I met Jim. I was hap­pier and tak­ing bet­ter care of my­self, and so fi­nally, at the age of 56, I took the time to go for my scan. The test showed a bit of cal­ci­fi­ca­tion, and the ra­di­ol­o­gist thought it would be worth com­ing back for an ul­tra­sound.

IT TOOK THE ul­tra­sound and a sec­ond mam­mo­gram in early June 2015 to find two large masses in my right breast that not even my doc­tor had been able to feel. To­gether, the tu­mours were over six cen­time­tres long. The tech­ni­cian brought in a ra­di­ol­o­gist, who ex­plained that she was go­ing to per­form a biopsy on the spot. A few days later, I got the

call. It felt ex­actly like you’d ex­pect— ev­ery­thing changed in an in­stant.

Sev­eral weeks later, an MRI re­vealed that the cancer was likely mov­ing into my lym­phatic sys­tem. My sur­geon rec­om­mended a sin­gle mas­tec­tomy with a biopsy of my lymph nodes to see how far the cancer had spread, fol­lowed by chemo and ra­di­a­tion. Surgery was set for July 15.

The pro­ce­dure went off with­out a hitch, and I re­cov­ered pretty quickly. About a month later, I was on the train to Mon­treal to speak at a con­fer­ence. I wore a breast pros­thetic, and no­body was any the wiser.

Chemo started in Septem­ber, and the six treat­ments weren’t easy. I wasn’t nau­seous, but dur­ing my last three treat­ments I had to im­merse my fin­gers and toes in ice for ex­cru­ci­at­ing 90minute in­ter­vals to pre­vent my nails from black­en­ing and falling off. There were other side ef­fects too: my body ached, I de­vel­oped mouth sores and body rashes, and I shuf­fled when I walked thanks to weak­ened joints. Dur­ing the worst of it, my legs were so swollen that none of my shoes or boots fit. KAREN’S EX­PE­RI­ENCE was dif­fer­ent in many ways. She was al­ways more care­ful than I was. She’d been told she had dense breasts, so she went to a clinic ev­ery year for an ul­tra­sound-guided mam­mo­gram. Her lat­est test in March 2016 had come back clear, but when she let the clinic know about my di­ag­no­sis, they asked her to come in for an­other mam­mo­gram, this time guided by MRI (mag­netic res­o­nance imag­ing). On May 11, they found a two-cen­time­tre lump

“A TALL MAN IN A NICE SUIT TOLD US HE HAD TO HAVE A CHEQUE BE­FORE THEY WOULD DO THE SURGERY,” SAID KAREN.

—ex­actly a year af­ter they’d found mine. On the rec­om­men­da­tion of the clinic, she opted for a lumpec­tomy with a si­mul­ta­ne­ous cos­metic re­duc­tion of the other breast.

The surgery was set for June 8, four weeks af­ter her di­ag­no­sis. “Just as I was get­ting ready to head to the op­er­at­ing room, a tall man in a nice suit came in and told us he had to have a cheque be­fore they would go ahead,” said Karen. “‘It’s our new policy be­cause peo­ple aren’t pay­ing their bills.’ We paid him, of course, but it seemed ab­so­lutely out­ra­geous, es­pe­cially when you’re fright­ened and sick.”

Dur­ing the pro­ce­dure, Karen’s doc­tor also re­moved some lymph nodes and found can­cer­ous cells in one of them. “We had all been so sure it would be sim­ple, be­cause the tu­mour was so small,” she says. The on­col­o­gists rec­om­mended chemo and ra­di­a­tion, as­sur­ing her that a mas­tec­tomy wasn’t nec­es­sary.

Like me, Karen had six chemo­ther­apy treat­ments, but her side ef­fects weren’t as se­vere, and she didn’t have to put her nails in ice. “My body ached, my legs swelled near the end, and my nails were dis­coloured and sen­si­tive. But I didn’t have mouth sores, and I never lost my ap­petite.” We both had 25 rounds of ra­di­a­tion, which was easy com­pared to the chemo.

DUR­ING KAREN’S treat­ment, I found my­self play­ing the role of big sis­ter. We talked on the phone a lot. I read her med­i­cal re­ports and told her what to ask the doc­tors. We de­cided I would visit her when John was away on busi­ness, just be­fore her fourth chemo treat­ment.

One morn­ing, she pulled out a folder with her med­i­cal bills. As I flipped through the eight-cen­time­tre pile of papers, I was as­tounded. She’d been to two hos­pi­tals and three clin­ics, but there were in­voices from al­most 50 dif­fer­ent ser­vice providers—pathol­o­gists, imag­ing cen­tres, ra­di­ol­o­gists, plas­tic sur­geons, anaes­the­sia ser­vices, blood labs—peo­ple she didn’t know, ask­ing for money for ser­vices she’d never heard of.

“The time and ef­fort you have to put into try­ing to un­der­stand who’s billing you and why, and the stress of hav­ing

KAREN’S IN­SUR­ANCE RE­PORT SHOWS THAT THE COM­PANY WAS BILLED

US$450,000 FOR HER TREAT­MENT.

to ne­go­ti­ate with sup­pli­ers and the in­sur­ance com­pany—all while you’re in cri­sis mode—is a real hard­ship,” said Karen, who found the process phys­i­cally and emo­tion­ally ex­haust­ing. “I have to ques­tion ev­ery­thing, or I end up pay­ing more than I owe. Can you imag­ine if you don’t speak English well? Or if you are to­tally in­ca­pac­i­tated by your ill­ness and don’t have help?”

As­ton­ish­ingly, Karen’s in­sur­ance re­port shows that the gross amount billed to the com­pany was just over US$450,000. Com­pare that to $46,893, the mean cost for two years of treat­ment for stage II cancer in On­tario

be­tween 2005 and 2009, which is cov­ered by health care.

Karen’s in­sur­ance com­pany ne­go­ti­ated this $450,000 bill down to just un­der $150,000, and she ended up ow­ing roughly $16,000 in de­ductibles ($14,500 for med­i­cal costs and $1,500 for pre­scrip­tions), plus two and a half years of pre­mi­ums (roughly $7,500). That puts the to­tal out of pocket for her cancer treat­ment at around $23,000. And that’s with health in­sur­ance.

IT’S BEEN OVER TWO years now since I fin­ished my treat­ments, and I’m feel­ing great. My hair has grown in, my en­ergy is back, and all my scans are clear. Karen com­pleted her treat­ments about a year and a half ago and is still strug­gling with lack of en­ergy and some de­pres­sion, which is just part of the process. And that’s not the end of it. We’re both now tak­ing Tamox­ifen, a drug that blocks es­tro­gen ac­tion in breast cells, which should re­duce the risk of the cancer com­ing back by 75 to 80 per cent.

Com­par­ing our ex­pe­ri­ences has re­minded me of how lucky I am to be liv­ing in Canada. Karen and I both re­ceived great med­i­cal care, but Canada’s health-care sys­tem is sim­ply more hu­mane. I have ac­cess to ex­cel­lent treat­ment when­ever I need it and can fo­cus on get­ting bet­ter in­stead of wor­ry­ing about huge bills or fight­ing with ser­vice providers. The Canada Health Act says this is what ev­ery res­i­dent is en­ti­tled to, and it’s one of the things that make our coun­try such a won­der­ful place to be.

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