MyFood Program Eating well with gastrointestinal cancer WESTEND61 © GETTY IMAGES
Welcome to MyFood 1
Diet, nutrition and your cancer journey 3
Changing your diet to help your cancer 5
Adapting your diet for treatment Chemotherapy/radiotherapy 7 Surgery 9 Stoma procedure 11 Low appetite or low energy 13 Difficultyswallowing 15
Findingpleasureandenjoymentoffoodafteryourdiagnosis 17
Patientexperiences–eatingwithdigestivecancer 19
AsktheexpertQ&As 21
MyFooddiary 23
Glossary 25
Resources 26
Notes 27
References 31
Contents
1
Welcome to MyFood
MyFood is part of the Support Harmonized Advances for better Patient Experiences (SHAPE) program: an international, multi-stakeholder initiative providing lifestyle support to people with gastrointestinal (GI) cancer.
Is this guide for you?
When you are faced with a Gl (also known as digestive) cancer diagnosis, it is really important that you maintain a healthy and balanced diet, making sure you have an adequate intake of nutrients and calories to help keep you strong throughout your treatment and recovery. This can be a real challenge especially when dealing with cancer and treatment. GI cancers include colorectal cancer (CRC), metastatic colorectal cancer (mCRC), pancreatic cancer (PC), and gastric cancer (GC).
Cancer symptoms or side effects of treatment may affect your appetite, and you may not enjoy eating the way you did before. Your weight or bowel movements may change. These effects are common, and there are ways you can overcome these, with the right support.
Along with staying active, being well nourished may improve your quality of life and wellbeing, and may also impact your response to treatment or surgery.1 You can even find enjoyment from food during your cancer journey.
The MyFood brochure is designed to help you adapt the foods you eat depending on your personal situation and to find pleasure from your food, while living with a digestive cancer.*
Developed with special input from:
• Dr Alexander Stein, oncologist, Germany
• Claire Taylor, oncology nurse, UK• Lucy Eldridge, oncology nutrition and
dietetics specialist, UK• Jenni Tamminen-Sirkiä,
patient advocate, board member of DiCE and executive director of Colores
• Iga Rawicka, patient advocate, vice chair and board member of DiCE and VP of EuropaColon Poland
• Maria Troina, patient advocate, person living without a stomach, Italy
1
* This brochure has been reviewed by a cancer dietitian, with input from patient representatives, carers and health care professionals. A glossary of terms can be found at the end of the brochure.
Does my diet affect my cancer journey?
Dietandnutritionareespeciallyimportantconsiderationsforpeoplewithdigestivecancers.Withtherightguidanceandsupport,changestoyourdietand nutrition could impact:1
• Howyourcancerdevelops • Yourresponsetotreatmentorsurgery
• Thesymptomsyouexperience • Your quality of life and well-being
Did you know that as many as 8 in 10 people with cancer will become undernourished?1,2
It’scommonforcancerpatientstobecomeundernourished,resultinginmalnutrition(cachexiaisthetermsometimesusedtodescribeweaknessandwastingofthebodyduetoillness,suchascancer).Thismeanstheyarenoteatingenoughoftherightnutrientsortakinginenoughcalories.Studieshaveshownthatpeoplewithdigestivecancercanalsobecomeundernourished.2,3 Thinkingaboutyournutritioncouldhelpyoutoensureyouareeatingthefoodyourbodyneeds.
You may find you can’t eat the same foods after your cancer treatment
Sinceeveryone’scancerjourneyisdifferent,thefoodsyoucanorwanttoeatmaybeaffected.Itispossibletomakeadjustmentstoyourdietthathelpyoucontinuetoeatwellwhileyouundergotreatmentsorprocedures,orifyouexperiencecertainsymptoms.
Ifyouhaverecentlybeendiagnosedwithadigestivecancer,youcanspeaktoyourhealthcareteamforadviceaboutyourdiet.Yourdietaryneedsshouldberegularlyreviewedbyyourhealthcareteamandrebalancedasneeded.
What can I do to help improve my diet and nutrition during my cancer treatment journey
3
Try to find foods that you enjoy and work for you. This will vary depending on your personal situation. You can add food of nutritional value into your own preferred diet.
TOP TIP
Do any of these apply to you?:
• Youmayneedtochangeyourdietbecauseofsymptoms, which depend on thetypeofcanceryouhave(i.e.,stomach,bowel,pancreatic,oresophagealcancer)andhowadvancedyourcanceris
• Treatmentslikechemotherapyorradiotherapymaychangethewayfoodtastestoyouandmayaffectyourappetite
• You may be preparing your body for surgery,whichiscalled‘prehabilitation’
• Youmayadaptyourdietbecauseofproceduresyouhavehad,e.g.,youmayhaveastoma(anopeningthatallowswastetoberemovedfromthebody)oratubefittedtohelpyoueat
• Insomespecificcases,youmayneednutritional supplements due to yourcancertype.Yourhealthcareprofessionalwillexplainthesetoyou.
–Alwaysspeaktoyourhealthcareteambeforeyoudecideyourselfto takeadditionalvitamins,supplements,orprobiotics,asthesecanaffectyour treatment
• Yourage,bodyweight,activitylevels,mood,andpersonallikesanddislikescouldalsoaffectyourdiet.
We’ve included dietary advice to help with all of the listed scenarios. As you read through the MyFood brochure, you may want to think about the advice given and how it could help you.
4
What changes can I make to my diet to help improve my general health?
Followingahealthyandbalanceddietisnotonlyimportantformaintainingoverallgoodhealthbutitcanalsohelpyoutofeelphysicallyandemotionallywell.4 While healthyeatingonitsowncannotpreventyourcancerfromcomingback,itcanhelpyoutoregainstrengthandimprovehowyoufeelaftertreatment.5
What sorts of foods should I be eating as part of a healthy and balanced diet?
Adietthatishighinhealthyproteins(likefreshchicken,lentils,orfish),fruitsandvegetables,andwholegrains(likebrownrice).6Asaguideyoushouldtryto:
• Eatatleast5portionsofavarietyoffruitandvegetableseveryday
• Base mealsonhigherfiberstarchyfoodslikepotatoes,bread,riceorpasta
• Havesomedairyordairyalternatives(suchassoyadrinks)
• Eatsomebeans,pulses,fish,eggs,meatandotherprotein
• Chooseunsaturatedoilsandspreads,andeattheminsmallamounts
• Drinkplentyoffluids (atleast6to8glassesaday)
• Maintainadietlowinprocessedorredmeat,asthesehavebeenshowntoincreasetheriskofcancer
• Avoidalcohol
• Avoideatingtoomanyfriedand/orsugaryfoods.6
Ifyouhaveadiagnosisofdigestivecancer,youmayneedtoadaptthefoodsyoueattoyourownindividualneeds,dependingonyoursymptomsortreatment.Wehopethatthisbrochureprovidesyouwithsomeideastohelpyouadaptyourdiet,ifneeded.
Can changes to my diet help me beat my cancer and stop it from returning?
5
Be careful of claims about certain “superfoods” and anti-cancer diets without reliable scientific evidence.7 Always speak to your health care team about any changes to your diet, as you may not be able to have certain foods or supplements alongside your treatment.
TOP TIP
A note about “superfoods”6
Youmayhearsomefoodsbeingcalled“superfoods”–thingslikeblueberries,broccoli,orgreentea.
Theseareoftenreportedtohavespecialhealthbenefits,oreventheabilitytocurediseaseslikecancer.However,whilehavingahealthy,balanceddietoverallmayhelptoreduceriskofcancerinsomepeople,thereisnocurrentevidencetosuggestthatparticularfoodswillmakeadifferenceontheirown.7
6
AN
NA
KU
RZA
EVA
/ M
OM
ENT
© G
ETTY
IMA
GES
Prepare to eat well in advance! Fill the fridge, cupboard and freezer with healthy foods and stock up on foods that require little or no cooking time. Maybe you can prepare meals ahead of time and freeze them. You can still prepare nutritious meals using convenience foods such as frozen or chilled meals, or tinned fishes and meats, ready prepared salads, pre-chopped vegetables and sandwiches.8
TOP TIP
Food for thought: adapting my diet for treatment, surgery, or important procedures
Following a healthy diet is important before starting any treatment
Eating a healthy and balanced diet and trying to maintain your body weight willhelpyoutostaystrongandloweryourriskofinfection.Itwillalsohelpyoutocopebetterwithtreatmentsideeffects,haveagreaterchanceofreceivingtherapywithoutunplannedbreaksandrecoverfromyourtreatment.5
How should I adapt my diet…
Before chemotherapy/radiotherapy?
It’sokaytoeatbeforeyoucomeinforyourfirstintravenous (IV)infusion.
• Eatalightmeal2-3hoursbeforeandchooseamealhigh infiber
• Avoidfatty,greasyorspicyfoods
• Ifyou’renothavinganIVyoushouldstilltryandeatanourishing,well-balanceddiettokeepyoustrong.
After chemotherapy/radiotherapy?
Youmaywanttoeatsmallportionsoffoods(5-6smallmealsratherthan3largemeals)containingasmuchnourishmentaspossibleandincludeavarietyoffoodsyouenjoyincluding:
• Energy-richfoods
• Protein-richfoods
• Fruitsandvegetables.9
7
Should I still be drinking alcohol?
• Whetheritissafetodrinkalcoholduringyourtreatmentwillpartlydependontheparticulardrugsyouarehaving. In general, it is recommended that you stop drinking alcohol during treatment.
• Yourhealthcareteamwillbeabletoletyouknowifit’ssafetodrinkalcoholwithyourtreatment.
Chemotherapy/radiotherapymaycausesymptomslikenausea,diarrheaandtastechanges,whichcanaffectyourappetiteandthetypesoffoodyouwantto/caneat.4,8,10
What can I do if I have side effects related to my chemotherapy treatment that are affecting me eating?
• Ifyourmouthissore,youcouldtryeatingsoftfoods
• Ifyoufeelsick,peppermintorgingerteacanproviderelief.Youmayalsobeprescribedanti-nauseamedications.Avoidfattyorstrong-smellingfoods–ifpossible,youmightwanttostayawayfromthekitchenwhilefoodisbeingcooked
• Ifyoursenseoftastechanges,tryexperimentingwithhighlyflavoredfoods–usespices,marinades,vinegar,pickles,orlemonjuice.Orusecontrastingtemperatures,likehotpiewithcoldicecream.Usefruitteasorhotsquash,insteadoftea/coffee.Addtexturetofoods,likebreadcrumbsorchoppednuts
• Oralthrush–afungalinfectionofthemouthandthroat-isacommonsideeffectofchemotherapy.Whitepatchescoveringthemouth,tongue,insideofthecheeksandbackofthethroataresymptomsoforalthrush.Itcanmakeeatingunpleasantbutitistreatable,soyoushouldspeaktoyourdoctorifyounoticethesesymptoms
• Remembertostayhydratedbydrinkinglotsofwater
8
Note: Remember to speak to your doctor if you experience any of the described side effects, if your appetite or weight changes a lot during treatment and before making changes to your diet.
How should I adapt my diet…
Before surgery?
Youmayneedtoprepareyourbody,whichiscalled“prehabilitation”.Thiscouldmeanthinkingaboutimprovingnutritionorinstillinghealthybehaviors.11
Foodsthatcouldhelpyouprepareforrecoveryinclude:
• Chicken,eggs,orfish,whicharehighinprotein
• Energy-richwholegrainslikepasta,bread,andrice
• Supplementdrinks(usuallyprescribedbyyourhealthcareprofessional).
Beforecertainimportantproceduresyoumayalsoneedtoprepareyourbody.Forexample,beforeacolonoscopyyouwillneedtoemptythecontentsofthebowel.Askyourhealthcareteamformoreinformationbeforeanysuchprocedures.
After surgery?
Surgerymayslowdigestion(howthebodyusesfood)andcanalsoaffectyoureating.Aftersurgery,youmayfindthatittakessometimetogetbacktoyourusualeatingpatternswhichisperfectlynormal.5
Yourhealthcareteamcanhelpyouwithindividualizednutritionaladvice.Asyoureturntoeating,trysmallportions,eatslowly,andchewyourfoodwell.Makesuretostayhydratedbydrinkinglotsofwater.
Will my eating problems ever get better?
Youreatingmayreturntonormalafterafewmonths.Forsomepatients,thismaytakealittlebitlongerandtheymaystillnoticedifferencesineating.12 If you’vehadsurgerytoremovepartofyourstomachorintestines,theneatingchallengesmayalwaysbepartofyourlife,butyoushouldbegivenadviceformyourhealthcareprofessionalonhowtomanagethis.Youmaywanttorefertothenextpagewherewetalkspecificallyaboutadaptingyourdietafterastomaprocedure.
9
Surgery increases your need for good nutrition. If you are weak or underweight you may need to eat a high-protein, high-calorie diet before surgery.
TOP TIP
10
THO
MA
S B
ARW
ICK
/ DIG
ITA
LVIS
ION
© G
ETTY
IMA
GES
Food for thought: adapting my diet after a stoma procedure
What is a stoma?
Peoplewithdigestivecancerswilloftenneedastoma–anopeninginthestomacharea(theabdomen)thatisusedtoremovewastefromthebody.Ifyouneedtohaveastoma,youwillbehelpedwithspecializednutritionaladvice.
Therearedifferenttypesofstomaprocedure.Acolostomyconnectsthebowel(colon)tothewalloftheabdomen,whileanileostomyconnectspartofthesmallintestine(theileum)tothewalloftheabdomen.Astomamaybepermanentortemporary.13
What and how should I eat and drink following my stoma?
Youmayneedtofollowalow-fiberdiet,asitmaybemoredifficultforthebodytodigestfiberinfoods.Youshouldbeabletoreturntoanormaldietafteraround8weeks.However,everyoneisdifferent,andforsomepeopleitmaytakeupto2yearsandtheremaybecertainfoodsyouneedtoavoid.12,14
Inpreparationforthis,fibershouldbegraduallyre-introducedinsmallquantities.
Atfirst,thewasteoutputintoyourstomacanbelooserthannormal–sotrytochewfoodwell.Asyourecover,youshouldaimtoeatahealthy,well-balanceddietthatincludeslotsoffreshfruitandvegetables,14consumesmallmealsanddrinklotsofwater.
Ifyoudowanttointroducenewfoodsintoyourdiet,youshoulddososlowly,withonetypeoffoodeachmeal.Thiswillallowyoutoseehoweachfoodaffectsyourdigestivesystem.14Dochewyourfoodwelltoavoidexcesswind.
Seeoverleafforsuggestionsoffoodstoeatonalow-fiberdiet–thesemaybeusefulevenifyouhavenothadastoma.
11
You may want to keep a food diary to share with your health care professional. We’ve created one for you to use which you can find at the end this brochure.
TOP TIP
12
These foods may be easier for your body to digest and may reduce discomfort from symptoms like bloating or gas.
Low-fiber food checklist
Allmeats,fish,high-proteinsoybasedalternatives,andtofu,butavoidovercookedandfattymeat
Whiteflour-basedproducts– bread,biscuits,ricecakes
Cakesandbiscuitswithoutdriedfruitandnuts
Low-fibercarbohydrates–whiterice,pasta,noodles,semolina/couscous,low-fiberbreakfastcereals
Peeledorcookedfruitandvegetables– avoidseedsandpith
You can choose:
Food for thought: adapting my diet if I have a low appetite or low energy
I really don’t have much of an appetite, how can I make sure I still get enough calories?
• Trytoeatwhenyouhaveenergy–andkeephigh-energy,nutritioussnackscloseathand
• Youmaywanttoeatregular,smallportionsofsimplefoodswithasmuchnourishmentaspossible–forexample,foodsthatslowlyreleaseenergy,likewholegrains.Youmightalsoaddmoreirontoyourdiet,likegreen,leafyvegetables,meat,lentils,andbeans
• Youcouldalsotrydrinkingahigh-caloriemealreplacementdrinkorpreparingaproteinshake
• Trytofindfoodsyouliketoeat.Itmighthelptomakemealslookmoreappealing on the plate
• Takesmallsipsofwaterwhileeatingtokeepyoufromfeelingfulltoosoon(unlessyouhaveaverydrymouth)
I’m not keeping active and getting enough sleep
Althoughitmightseemdifficult,trytokeepasactiveasyoucanasthiscanhelpimproveyourappetite.5Goforwalks,takethestairsinsteadoftheelevator,getoffthebusonestopearlierandwalktherestoftheway.Ifyoufindyourselfathomealot,therearestillwaysthatyoucanstayactive. SeetheMyMovebrochureforworkoutstailoredforthehome.
Makesureyouaregettingenoughrestorativesleep,whichisespeciallyimportantforyourphysicalandemotionalrestoration.SeetheMyMoodbrochures formoresuggestions:https://servier.com/wp-content/uploads/2020/12/21LN1063BA_MyMood-Patients.pdf.
13
14
STEV
ICA
MRD
JA /
EYEE
M ©
GET
TY IM
AG
ES
Instead of eating three large meals per day (breakfast, lunch and dinner), you may want to have five or six meals smaller meals per day, introducing three snacks (one for the morning, afternoon and evening). Try to eat the same amount of food you normally would daily but spread further throughout the day.
TOP TIP
WorldCancerResearchFund https://www.wcrf-uk.org/uk/recipes/banana-and-peanut-butter-flapjacks
15
I feel tired/have low energy during my treatment
• Theadviceabovewillalsohelpimproveyourenergylevels
• Ifyoulivealoneandfindcookingorpreparingmealsregularlyisbecomingtiring,youcouldalwaysfreezeportionsofmealsaheadoftime
• Ifyoulivewithsomeoneelse,maybetheycouldhelpwithyourmealpreparation.Youmayalsowanttoaskfriendsandfamilyforsupportwithpreparingmeals
• Speaktoyourdoctorassoonaspossiblesotheycansupportandadviseyou
Look for ways to maintain enjoyment in eating – stick to simple meals, made with foods you really enjoy. You will get more pleasure from things you want to eat! Eat well when you have an appetite.
TOP TIP
JOH
N S
HEP
HER
D /
E+ ©
GET
TY I
MA
GES
Try this recipe: Banana & Peanut butter flapjacks
16
High energy/high protein food checklist
Increase the energy/protein in your favorite recipes by adding some simple ingredients:
Oliveoiltovegetables,saladsorsoups
Meat(mainlywhitemeat,suchaschicken)andfish
Cheeseandeggs;ontheirownoraddedtootherdishes
Spoonful’sofplainyogurt,mascarponecheese,sourcream,nutbutterstosauces,soups,ormeatdishes
Nuts,seeds,cream,plainGreekornatural yogurt,evaporatedcreamorcondensedmilk todessertsandcake
Food for thought: adapting my diet if it is difficult to swallow
What should I do if I’m finding it hard to swallow?
Trymoist,softfoods,likescrambledeggs,mashedpotato,andslow-cookedmeatandvegetablesandcheweverythingreallywell.Youcanalsosoftenfoodsusingsauces.Eatsmallportions5to6timesadayinsteadof3largemeals.5
Ifyouarefindingitverydifficulttoswallowthenmixingorblendingfoodsintosoupsorsmoothiesmighthelp.
I have been fitted with a feeding tube15
What is a feeding tube?
Somepeoplewithdigestivecancerwillbefittedwithafeedingtube (anaso-gastricfeedingtube)toprovideextranourishment.Thisisplacedthroughthenose,intothestomach.
What kind of nourishment does it provide?
Youwillreceivefoodinliquidformthatcontainstheessentialnutrientsforyourbody.Youmaybefedthroughthetubeatnight,orduringtheday,orboth.Dependingonyoursituation(i.e.,whetheryoucanswallow),youmightalsobeabletoeatanddrink.
Sometimes you might not feel like eating much – so when you do feel hungry, make the most of it!
TOP TIP
17
VLA
DIS
LAV
NO
SIC
K / 5
00PX
© G
ETTY
IM
AG
ES
For breakfast, you could try:
• Porridgeorcerealssoakedinhotmilk
• Greekyogurtorfull-fatyogurt,orfromagefrais
• Softfruits,likebananas,melons,orstewedfruits;orfruitsmoothiesmadewithyogurtoricecream
• Pancakeswithbutter,honey,orsyrup
For meals and savory snacks, you could try:
• Tenderstews,casseroles,orcurries
• Fishpies,fishpoachedinsauce(parsley,cheese,hollandaisesauce);fishpastesormousses
• Softpasta/noodlesinsauce,risotto,polenta
• Eggmayonnaise,scrambledeggs,orsoufflé
For dessert, you could try:
• Milkypuddings:custard,yogurt,ricepudding,tapioca,mousse,blancmange,crèmecaramel,oricecream
• Stewedfruitwithcustard,evaporatedmilkorcream
18
Soft foods suggestions
Eating and the enjoyment of food: can I still enjoy food alone or with friends if I have a digestive cancer diagnosis?
Finding pleasure and enjoyment of food after your diagnosis
Acancerdiagnosiscanbelife-changinginmanyways.Sometimes,youmaynotwanttoeatasyoudon’tenjoyfoodlikeyoudidbefore,oryoumaynotfeellikesocializingwithyourfriendsorfamilylikeyouusedto,especiallyifsocialeventsinvolvefoodandeating.However,therearemanywaysthatyoucanadapthowyoueatfoodsoyouenjoyeatingagainwhetheryouareeatingaloneoreatingout.
Ifyouhavetasteorsmellchangesfollowingcancertreatment:5
• Choosefoodsthatlookandsmellgood:avoidfoodsthatdon’tappealtoyou
• Marinatefoodstohelpimprovetheflavorofmeatsandfish
• Makefoodssweeteriftheyhaveasalty,bitteroracidtaste
• Addextraflavortoyourfoodswithherbs,onions,orusesaucesonmeats
• Avoidfoodsanddrinkswithsmellsthatbotheryou.
Cookwhenyou’refeelinggoodtokeepthatpleasureofcookingalive.Ifyouareeatingalone,makethemostofthegooddaysandtreatyourselftoyourfavoritefoodswithoutfeelingguiltyandenjoy!
If you’re finding that eating healthy is becoming costly why not buy frozen fruit and vegetables? Freezing is a safe way to increase the shelf life of nutritious foods and you can always be sure to get your favorite fruits and vegetables even they are out of season.
TOP TIP
19
20
Food safety is even more important if you have cancer, soitmightbeagoodideatovisitrestaurantsthathavebeenrecommendedtoyouasreputableortovisitplacesyouhavebeentobefore.Thatwayyoucanbesurethattherestaurantfollowsallappropriatefoodhygienestandards.
Many restaurants have their menus available online.Youmightwanttotakealookbeforeyouarrive,soyoucandecidewhatyouwouldliketoorder.Youmaywantastarterorasideinsteadofa maincourseifyouareonlyabletoeatsmallmeals.Knowingwhattherestaurantservesmayhelpreduceanyanxietyyoumayfeelabouteatingoutandhelpyoufeelprepared.
Restaurants come across many different dietary requirements nowadays and a lot of them are used to adapting their menu. Don’tbeafraidtoasktherestauranttomakeyouaspecialmeal ortoadaptsomethingontheirmenuifyouthinkthiswillhelpyou.
When you arrive at a restaurant it could be a good idea to locate where the bathroom facilities areincaseyouneedtoaccessthemquicklyduringyourvisit.
If you are eating at a friend’s house,itisprobablyagoodidea,if you feel comfortable, to speak to them in advance about what foods you can eat.Youmightalsowanttoprepareandtakesomefoodwithyouifyouarefollowingaveryspecificdietbecauseofyourcancer.
High FIVE: top tips for eating out or eating with friends:
Patient experiences: eating with digestive cancer
IwasdiagnosedwithStageIVmetastaticcolorectalcancerin2006. Mytreatmentinvolvedseveralcombinationsofchemotherapy,abiologicalandalsoradiotherapy.Iwasseriouslyillandmytreatmentwasaffectingmy well-beingandappetite.TherewasametallictasteanddrynessinmymouthafterchemoandIcouldsmellthisallovermybody.Irememberthetirednessthatislikenoother.Ialsorememberthehighlightsofeveryday:thesmilesandloveinfrontoftheworries.
Everyonewastryingtohelpme.Associablecreatures,weplacefoodhighonourlistofpriorities,andIremembermydearMummakingspecialmealsforme.EatingtopleaseherwasnotagoodideaandIbecamequiteill.Toningdownthespiceandeatingsmallportionsmoreoftenwasbestforme.Iwasadvisedagainsttakingunprovenadvicefromtheinternetsuchasfollowingayogurtandflaxoildietasthiscouldreactwiththechemo.
Forme,Isawcanceraspartofmybodyratherthanabeast.Icouldhelpmyselfbyworkingwithit;takingadviceonnutrition,restandexercise.IamsopleasedtotellyouthatIamverywelltoday,14yearslater,aturn-aroundfromtheshortprognosisofonlythreemonths.
Barbara Moss, mCRC survivor and patient advocate, DiCE
21
FOTO
STO
RM /
E+ ©
GET
TY I
MA
GES
Ihadmystomachremovedasaprecautionarymeasureafterdiagnosiswithafamilialmutationlinkedtogastriccancer.Ididn’thavetodochemotherapy.
Thehistologyrevealedthatthecancerwasthere.Isavedmylife!Mychoicewasatoughone,butitturnedouttobetherightone.AftertheoperationIhadnofoodfor12days.Istillremembermyfirstmealaftertheoperation,asliceofchickenandsomemashedpotatoes.Icouldn’twaittotasteit,butwhenIswallowedit,IfeltlikeIwassuffocating.
Atthatmoment,IunderstoodthemeaningofthewordsIhadheardfromothergastro-resectedpatients:afterwardsnothingwillbethesame.TheoldMarianolongerexisted,fromthatdayonIfoughtagainstmyself,tryingtoacceptwhatIhadbecome.Thefirstyearwasatimeofchangeandadaptation.Theflavorswerenotthesame,havingtochewfoodsomuchaltereditsconsistency,IfeltlikeIwaseatingvomit!AtnightIdreamtoffood,duringthedayIstruggledtoeatjusttosurvive.FivemonthsaftertheoperationIweighed42kg,havinglost15kg.Ididn’trecognisemyself,myskinwrinkled,hairfelloutinmyhands,andcheekshollowed.
EveryonekepttellingmethatIhadtoeat,butformeitwasevenworse.IlovedmeatbutIcouldn’tevensmellit,itstanktohighheaven,itwasasifthesurgeryhadamplifiedthesmellsandtastes.
IoftenhaddiarrheaafterIate.Thedoctorssaid‘’youhavetoeat,eatlittleandoften’’.IdidwanttoeatandrediscovertheflavorsIhadlovedsomuch.ItwasnotthatIdidn’twantto,butrathernotbeingableto.
Slowlythingshavestartedtogetbetter,thediarrheahasimprovedbutfoodisstillthemaincharacterofmydreams,Irarelymanagetoeatwithenthusiasm.Whathaschangedisthewayoffacingit,acceptingthechange,acceptingthatitisnotuptome,andthattherearegoodandbaddays.
Idon’tregrettheoperation,Iwoulddoitallagain,becauselifeisbeautiful,andIwanttolive.Iamgratefulforhavinghadthechancetochooseandtosavemylife.IamproudofhavingdonewhatIdid,becauseIwillbeluckyenoughtoseemychildrengrowup,andiftheyshouldbepositiveforthemutation,theirmotherwillbetheirexample,youcanlivewithoutastomach.
Maria Troina, person living without a stomach and patient advocate
22
When do I need see a dietitian or health care professional?
• Speaktoahealthcareprofessionalassoonaspossibleifyouareworriedthatyournutritionisbeingaffectedbylivingwithcancer.
• Forexample,ifyouhaveseenalargechangeinyourweight(i.e.youhavelostmorethan5%ofyourpre-illnessbodyweightover6-12months),orifyourbowelmovementsareverydifferenttonormalforyou.
What foods will improve my energy levels?
• Tryfoodsthatslowlyreleaseenergyovertime,likewholegrainbreakfastcereals,newpotatoes,orwholegrainbread.
• Eatgoodsourcesofprotein,likeleanmeatandfish,nuts,seeds,andpulses.And,trytokeephydratedbydrinkingslotsoffluids.
Should I limit what I eat in any way?
• Yourmaingoalshouldbetoeatasfulladietaspossible.Yourhealthcareteamwillletyouknowifthereisaneedtolimitanyfoodsordrinks,oryourcalorieintake,butthisshouldbeapproachedwithcaution–especiallyduringtreatment–andledbyahealthcareprofessional.
Do I need any vitamins, supplements or probiotics?
• Youmayneedavitaminormineralifyouarestrugglingtoeatafulldiet,butthisadviceshouldalwayscomefromyourhealthcareteam.
• Somesupplementsinteractwithtreatment,soalwaysfollowyourdoctorordietitian’sadvice.Similarly,althoughthereissomeemergingevidencethatahealthygutmicrobiomemayhaveaprotectiveroleincancer,thisisacomplexarea.
• So,youshouldonlytakeprobioticsontheadviceofyourhealthcareprofessionalandnotduringtreatment.
Is there ever a time to start dieting?
• Youshoulddiscussanyformofdietingwithahealthcareprofessional. Ifyouhaveagoodappetite,trytofollowahealthy,balanceddiet–eatwholegrains,proteinslikemeat,fish,pulses,andfruitsandvegetables.
• Bemindfulofhowandwhatyouareeating,andtryincorporatingmovementorexerciseintoyourlifeasyouareable(seetheMyMovebrochure).
24
26
How can I look after myself while caring for somebody with cancer?
• Itisimportantthatcaregivershavetimetothinkabouttheirownnutrition.
• Trytotakeexercise,gettingfreshairandrestasneededaswell.Youmightalsowanttoseeksupportandshareyourexperienceswithotherpeoplewhoaregoingthroughsomethingsimilar.Patientsupportgroupsoftenofferthiskindofsupport.
How can I prepare foods for someone with cancer when they don’t feel like eating?
• Foodisfarmorelikelytobeeatenifitislessoverwhelming,somakesmallportions,onsmallplates.
• Useattractivepresentationandexperimentwithflavors,ifyoucan. Youmightwanttocookawayfromtheperson(unlesstheywanttohelp!),buttrytoeattogether.
• Remembertotakeitday-by-dayanddon’tbediscouragediftasteorappetitechangesfromdaytoday.
Ask the expert: Q&A with a dietitian
I’m a caregiver
The food diary
MO
ND
AYTU
ESD
AYW
EDN
ESD
AYTH
UR
SDAY
FRID
AYSA
TUR
DAY
SUN
DAY
BREAKFAST LUNCH DINNER
NO
TES
27
29
Diet: thekindsoffoodapersoneats
Dietitian: an expert on diet and nutrition
Cachexia: extremeweightandmusclelossduetosevereillness,suchascancer
Chemotherapy: adrugtreatmentusedtotreatcancerbykillingcells,orstoppingthemfrom growing and multiplying
Colon preparation: emptyingthecontentsofthebowelsbeforeacolonoscopy,whichisaprocedureusedtolookinsidethecolon
Colostomy: aproceduretoconnecttheboweltothewalloftheabdomen,toremovewastematerialsfromthebody
Gastrointestinal cancer:
relatingtocancersofthedigestivesystem,includingtheesophagus,stomach,pancreas,intestines,andcolon
Ileostomy: aproceduretoconnectpartofthesmallintestine(theileum)tothewalloftheabdomen,toremovewastematerialsfromthebody
Malnutrition: anumbrellatermforpoornutrition,includinginadequateconsumptionorabsorptionofnutrients(undernourished)andexcessconsumptionofnutrients(overnourished)
Naso-gastric feeding tube:
atubeinsertedintothestomachtoprovidenecessarynourishment
Nutrient: substancesinfoodsthatareessentialforhealth
Prehabilitation: preparationofthebodybeforesurgerythroughdiet
Radiotherapy: acancertreatmentthatusesX-raysorsimilartypesofradiation
Stoma: anopeningintheabdomen(stomach)thatallowsforremovalofwastefromthebody(see:ileostomyandcolostomy)
Undernourished: havinginsufficientfoodorothersubstancesforgoodhealthandcondition
Glossary of Terms
30
Patient support groups are a great source of support and advice for patients with many different types of cancer and often give dietary advice on their websites, or may organize cooking lessons.
TOP TIP
Resources
The Eatwell Guide: https://www.nhs.uk/live-well/eat-well/the-eatwell-guide
The Healthy Eating Plate: https://www.hsph.harvard.edu/nutritionsource/healthy-eating-plate/
35
References
1. RavascoP.Nutritionincancerpatients. J Clin Med2019;8(8):1211.
2. MuscaritoliMetal;PreMiOStudyGroup.Prevalenceofmalnutritioninpatientsatfirstmedicaloncologyvisit:thePreMiOstudy.Oncotarget.2017;8(45):79884-79896
3. KamperidisNetal.Prevalenceofmalnutritioninmedicalandsurgicalgastrointestinaloutpatients.Clin Nutr ESPEN.2020Feb;35:188-193
4. BowelCancerUK.2018.EatingWell:Aguidetodietandbowelcancer.Availableat:https://bowelcancerorguk.s3.amazonaws.com/Publications/EatingWell_BowelCancerUK.pdf(LastaccessedOctober2020)
5. NationalCancerInstitute.Eatinghints:before,duringandafterCancerTreatment.2018.Availableat:https://www.cancer.gov/publications/patient-education/eating-hints(LastaccessedDecember2020)
6. CancerResearchUK.2019.Doeshavingahealthydietreducemyriskofcancer?Availableat:https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/diet-and-cancer/does-having-a-healthy-diet-reduce-my-risk-of-cancer(LastaccessedDecember2020)
7. CancerResearchUK.2016.Foodcontroversies:superfoods.Availableat: https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/diet-and-cancer/food-controversies(LastaccessedDecember2020)
8. Grundherr J, et al.Impactoftasteandsmelltrainingontastedisordersduringchemotherapy–TASTEtrial.Cancer Manag. Res2019;11:4493-4504
9. GuysandSt.Thomas’Dietaryadviceduringchemotherapy.Availableat:https://www.guysandstthomas.nhs.uk/
our-services/cancer/treatment-care/patient-leaflets.aspx?GenericList_List_GoToPage=3(Lastaccessed December2020)
10. Chemocare.2020.Whatmightaffectnutrition during chemotherapy, and how shouldyouadjustyourdiet?Availableat:http://chemocare.com/chemotherapy/health-wellness/what-might-affect-nutrition-during-chemotherapy.aspx#:~:text=Chemotherapy%20may%20cause%20side%20effects,diarrhea%2C%20and%2For%20constipation(Lastaccessed October2020)
11. MacmillanCancerSupport.2020.Principlesandguidanceforprehabilitation.Availableat:https://www.macmillan.org.uk/about-us/health-professionals/resources/practical-tools-for-professionals/prehabilitation.html(LastaccessedOctober2020)
12. CancerResearchUK.2019.Oesophagealcancer:Eating.2019.Availableat:https://www.cancerresearchuk.org/about-cancer/oesophageal-cancer/living-with/eating(LastaccessedOctober2020)
13. CancerResearchUK.2019.Havingacolostomyorileostomy.Availableat:https://www.cancerresearchuk.org/about-cancer/coping/physically/bowel-problems/types/having-colostomy-or-ileostomy(LastaccessedOctober2020)
14. NHS.Livingwithanileostomy.Availableat: https://www.nhs.uk/conditions/ileostomy/living-with/(LastaccessedDecember2020)
15. NHS.Nasogastrictubefeeding.Availableat: http://www.swbh.nhs.uk/wp-content/uploads/2012/07/Nasogastric-tube-feeding-ML4763.pdf(LastaccessedOctober2020)
21LN0475BA
The SHAPE Steering Committee:
• Chair: Professor Alberto Sobrero, San Martino Hospital, Italy (oncologist)• Dr Alexander Stein, University Cancer Centre, Germany (oncologist)• Claire Taylor, St Mark’s Hospital, UK (oncology nurse)• Klaus Meier, HKK Soltau, Germany (oncology specialist hospital pharmacist)• Zorana Maravic, Acting CEO, Digestive Cancers Europe (patient advocacy leader)
Thank you to our partner in patient perspectives and insight – Digestive Cancers Europe (DiCE) – and its members for their collaboration.
The MyFood brochure is part of the Support Harmonized Advances for better Patient Experience (SHAPE) initiative that is funded by an unrestricted grant from Servier.
Index of SHAPE brochures:1. MyMove – moving more with mCRC2. MyMood – managing your emotional health with mCRC3. MyDialogue – getting more from your conversations with health care professionals4. MyFood – managing your nutrition with GI cancers5. MyJourney – negotiating the GI cancers journey (planned)
Pictogram credits: iStock/Getty Images Plus & Getty Images DigitalVision Vectors