Con­quer­ing can­cer

A sur­vivor of­fers tips for deal­ing with the dis­ease

Northwest Arkansas Democrat-Gazette - - STYLE - STEFANIE JOHO

At age 24, af­ter two surg­eries and two ag­gres­sive rounds of chemo­ther­apy failed to cure me, my on­col­o­gist sent me home to die.

When I was di­ag­nosed with colon can­cer in 2013, I’d never even heard the word im­munother­apy. I didn’t know that my doc­tors wouldn’t have all the an­swers. I thought clin­i­cal tri­als were last-ditch ef­forts rather than treat­ments that save count­less lives.

And I didn’t know that a treat­ment geared to fight­ing my spe­cific type of can­cer and the ge­netic com­po­nents of my tu­mor would go on to po­ten­tially of­fer tens of thou­sands of pa­tients a rev­o­lu­tion­ary new path to sur­viv­ing can­cer in 2017.

Be­cause I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the crit­i­cal things that I have learned in what is now a new era in can­cer care. Be­cause a dis­ease that should have killed me in­stead launched my ca­reer in pa­tient ad­vo­cacy.

First and fore­most, it is im­por­tant to re­mem­ber that ev­ery can­cer is dif­fer­ent. Your jour­ney will be dif­fer­ent from mine. Your can­cer is yours and yours alone. So think of the fol­low­ing points as “road signs.” They’re ones that I wish some­one had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to po­ten­tially help shape your think­ing as you be­come an ac­tive par­tic­i­pant in sav­ing your life.

1. The more we know, the more we can fight for our lives.

We look to doc­tors in their white coats to be the ex­perts — partly be­cause, in a mo­ment of such de­spair, we want to be able to look to some­one to just give us the an­swers. But you should know that you will not find that per­son in any­one but your­self.

In the be­gin­ning of my can­cer jour­ney, I felt in­tim­i­dated by my doc­tors and made sev­eral de­ci­sions that I re­gret. I walked into ap­point­ments and agreed to ev­ery­thing in­stan­ta­neously, with­out even con­sid­er­ing a sec­ond opin­ion. As my can­cer kept com­ing back and the treat­ments kept fail­ing, I de­cided that the only chance I had to make it out alive would be to be­come an ac­tive par­tic­i­pant on my jour­ney. I would have to ed­u­cate my­self.

I scoured the in­ter­net. I be­came an “ex­pert” not only in my spe­cific dis­ease, but also in the cur­rent can­cer land­scape.

I’m in no way en­cour­ag­ing you to be­come your own doc­tor and un­der­stand all the sci­ence. And I’m cer­tainly not en­cour­ag­ing you to take ev­ery­thing you read on the in­ter­net as fact. But in 2017, with the amount of ac­ces­si­bil­ity to in­for­ma­tion, I’m en­cour­ag­ing you to seek it out. Never take any­thing at face value or trust blindly. Make

in­formed de­ci­sions, not de­ci­sions based on fear.

Walk into ap­point­ments with your doc­tors as an equal, not as a pas­sive by­stander. Be­ing an in­formed can­cer pa­tient to­day is a full-time job. As with any job, that means learn­ing new skill sets and find­ing the re­sources needed to suc­ceed.

2. Ask­ing ques­tions is not mak­ing trou­ble.

You might be made to feel that be­ing a “good pa­tient” means not ask­ing ques­tions. But do not be afraid to speak up. Your life quite lit­er­ally de­pends on it. Come into ev­ery ap­point­ment with a pre­pared list. If pos­si­ble, take some­one with you who can take notes. If you are con­fused about some­thing, ask. If you think of it later, write it down.

Re­mem­ber: You’re the one whose needs are para­mount. You’re the one who is fight­ing for your life. Make ev­ery thought, con­cern and feel­ing heard. If it isn’t re­ceived the first time, say it as many times as nec­es­sary.

If you be­gin to de­velop a symp­tom from a treat­ment side ef­fect or from the can­cer it­self, un­der­stand that it is the sys­tem’s job to help you get re­lief. If your doc­tors aren’t tak­ing you se­ri­ously, do not be­lieve their judg­ment over yours. And if you feel that your physi­cian doesn’t un­der­stand or lis­ten to you, then per­haps it’s time to seek one out who will. In my opin­ion, an in­di­vid­ual who does not have em­pa­thy is not a physi­cian.

3. Be­come an ex­pert in your can­cer.

No two can­cers are the same. In­creas­ingly, knowl­edge of such in­di­vid­ual vari­a­tion is be­ing shown to lead to more ef­fec­tive treat­ments. Ask your physi­cians and un­der­stand ev­ery type of ge­netic test­ing avail­able to you. The more gran­u­lar you can get about the specifics of your dis­ease, the more you will max­i­mize your chances of iden­ti­fy­ing the best pos­si­ble treat­ment for your “per­sonal” tu­mor. (Dis­cov­er­ing the ge­netic biomarker of my can­cer saved my life.)

4. Take note of ev­ery po­ten­tial side ef­fect. Re­port ev­ery­thing.

The in­cred­i­ble ad­vances in can­cer treat­ments have cre­ated a new set of chal­lenges for clin­i­cians, es­pe­cially in how to iden­tify the side ef­fects. Given that these are new treat­ments, your doc­tors are not as prac­ticed with them as they are with chemo­ther­apy and ra­di­a­tion.

For ex­am­ple, im­munother­apy is en­tirely dif­fer­ent from tra­di­tional treat­ment. The for­mer uti­lizes the pa­tient’s own im­mune sys­tem, whereas the lat­ter aims to at­tack only the can­cer cells. Early recog­ni­tion and proper man­age­ment of side ef­fects can mean the dif­fer­ence be­tween life and death.

Don’t hold back a sin­gle con­cern from your doc­tor and care team. Even if you think it sounds mi­nus­cule or ir­rel­e­vant, ob­serve and re­port any changes.

5. Clin­i­cal tri­als are not a last-re­sort op­tion.

The lines of treat­ment are rapidly chang­ing, and, more of­ten than not, get­ting ac­cess to cut­ting-edge treat­ments en­tails en­rolling in a clin­i­cal trial. There’s an un­for­tu­nate mis­con­cep­tion that clin­i­cal tri­als are re­served for those who have ex­hausted all other op­tions. In re­al­ity, tri­als can ac­tu­ally of­fer ac­cess to the most cus­tom­ized treat­ment.

And in fact, im­munother­apy is more and more be­com­ing the first line of treat­ment — and even be­ing used be­fore surgery to pre­vent re­lapses.

And just as in­di­vid­ual pa­tients can’t tackle their dis­ease by them­selves, we all ul­ti­mately must help one an­other by shar­ing and par­tic­i­pat­ing in clin­i­cal tri­als. Only 4 per­cent of can­cer pa­tients are cur­rently en­rolled in stud­ies. Ex­plore tri­als at can­cer cen­ters with a lot of ex­pe­ri­ence in the type of ther­apy be­ing tested. See if you have op­tions out­side of what has been “stan­dard of care” for 70-plus years.

In the doc­tor-pa­tient re­la­tion­ship, pa­tients must un­der­stand that they are part­ners of sci­ence and as big a part of the cure as doc­tors. With­out us, and our will­ing­ness to par­tic­i­pate, med­i­cal ad­vances would not ex­ist.

I will al­ways feel a tremen­dous sense of pride for par­tic­i­pat­ing in a study that will save many thou­sands of peo­ple’s lives.

6. Can­cer is not just a phys­i­cal dis­ease.

It is crit­i­cal through­out your jour­ney to ad­dress the men­tal, emo­tional and spir­i­tual as­pects. Seek help, sup­port and heal­ing from other places, too. There are many schools of thought about why peo­ple be­come ill and what can be done to help them re­cover. It’s im­por­tant to main­tain your an­chor in gen­er­ally ac­cepted med­i­cal prin­ci­ples, but don’t be afraid to look fur­ther upand down­stream to see if other cur­rents of heal­ing can add value for you and your care team.

As only one ex­am­ple among many, learn­ing about nu­tri­tion made me feel as though I were ac­tively fight­ing and do­ing some­thing ev­ery sin­gle day to help my body heal.

7. Hope is a life­line.

I be­lieve in hope. Pe­riod. It saves lives. When your mind tells you that it’s over, the body has no rea­son to keep fight­ing. If you find your­self drift­ing in that di­rec­tion, re­mem­ber: “You haven’t failed the treat­ments; the treat­ments have failed you.”

Of course, doc­tors must tell their pa­tients the dif­fi­cult truth. But the spe­cific words used to de­liver such news mat­ter. If your doc­tor is un­able to pro­vide you with hope or en­cour­age­ment to keep fight­ing, find the hope and strength from within your­self and the loved ones around you.

8. None of this can be done alone.

You are pow­er­ful, but you are not su­per­hu­man. Know your lim­its.

Can­cer is not a jour­ney that you can nav­i­gate alone. The peo­ple with whom you sur­round your­self will al­ter the course of your jour­ney. They will lend you strength when you feel you have noth­ing left to give.

If you phys­i­cally or emo­tion­ally can­not ad­vo­cate for your­self, then ask some­one to be your ad­vo­cate. When things were par­tic­u­larly bleak, my younger sis­ter, Jess, of­ten had to speak up for me. She knew what my doubts were, what my con­cerns were and what was im­por­tant to me. She be­came my voice when I didn’t have one.

Create a health-care team that lis­tens to you and cares about you and in­cludes you.

Lastly, and so very im­por­tantly: Con­nect with oth­ers in the com­mu­nity. Mak­ing friends with other can­cer pa­tients (even through so­cial me­dia) en­abled me to share the fears and anx­i­eties that I was too ashamed or em­bar­rassed to talk about with those who weren’t con­fronting their own mor­tal­ity. I could speak openly about my side ef­fects, the changes tak­ing place in my body, my iso­la­tion. I could ut­ter the words, “I’m ready to give up,” with­out the loom­ing guilt as­so­ci­ated with say­ing that to loved ones.

It cer­tainly doesn’t have to be about only can­cer, all of the time, but know­ing that this kind of sup­port ex­ists is heal­ing. It makes you feel un­der­stood.

Arkansas Demo­crat-Gazette/NIKKI DAWES

The Wash­ing­ton Post/MICHELLE GUSTAFSON

Stefanie Joho, 27, plays with a friend’s dogs, Dy­lan and Nel­lie, in Penn Val­ley, Pa. Joho was part of a small trial in Bal­ti­more show­ing that im­munother­apy could at­tack cer­tain can­cers thought to be un­stop­pable.

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