Perspectives - OhioHealth
perspectives MY CANCER GUIDEBOOK AND JOURNALget connected with ohiohealth’s cancer resources:Learn about cancer and treatment optionsKeep records of your cancer experienceFind recommendations for local resources and support servicesLearn what questions to askMake health and life planning decisionswww. OhioHealthCancerCare.com
perspectives MY CANCER GUIDEBOOK AND JOURNALnameaddressphoneemailin case of emergency contact
INTRODUCTION“Perspectives: A Cancer Guidebook and Journal” was developed by OhioHealthwith input from our patients and their family members who wanted to be moreinvolved in their cancer treatment. Because cancer is unique, this comprehensiveguidebook was designed to help you better understand this disease and the wayswe treat it, give you access to information and resources available to help youalong the way and reassure you that on your journey, you are never alone.No matter which OhioHealth care site you choose for treatment, a team ofhealthcare professionals is dedicated to providing care and offering you support –from physicians, nurses, therapists, dietitians and pharmacists to counselors, socialworkers, chaplains and volunteers. Beyond treating your cancer, this team is hereto guide you, educate you and connect you to countless other resources availableto you – most of which you’ll find in the pages to follow.You’ll also see that throughout this guidebook, members of our healthcare team,our patients and their family members have taken a moment to share theirperspective on the cancer experience – thoughts and stories that may give you afresh perspective on your own cancer diagnosis and treatment. We encourage youto share your thoughts and insights in the journal pages we’ve provided.Every case of cancer is as different as every individual diagnosed, which is whywe believe a positive mindset – ours, yours and your family’s – is essential tothe healing process. While ensuring the highest level of expertise and the mostadvanced treatments and technologies are available to you, we also insist on aphilosophy of care that is collaborative, patient-centric and compassionate. Thisguidebook and journal was designed to help.We are, after all, not just treating cancer. We are treating people with cancer.We are treating your cancer.To get connected with an OhioHealth cancer expert to talk about your cancerdiagnosis, treatment or survivorship, please call CancerCall at (614) 566-4321or toll-free at 1-800-752-9119. We are available Monday through Friday, 8a.m. to 5 p.m. You, your friends or family members can also visit us online EALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119
manifesto“It’s cancer.”At OhioHealth, we realize that nothing can prepare you or yourloved ones to hear those words from a physician.In seconds, your life has changed.Those words are more than a diagnosis. To us, they are a call toarms. And with those two words, your OhioHealth cancer carebegins in earnest.Our team of world-class oncology experts collaborate to create acare plan that is as unique as you are to best treat your cancer.With proven treatment methods and leading-edge breakthroughs,we walk alongside you, step by deliberate step, on your paththroughout your care.Personal. Powerful. Precise.These are the words that will define your treatment.Sound Treatment. Deep Expertise. Compassionate Care.This is how we fight cancer at OhioHealth.
TA B L E O F CO N T E N T SMy Care TEAM. .1My CALENDARMonth-at-a-Glance. 7My MEDICINEMedicine Record. 19Medicine Log.21My NOTESAppointment Notes.23My RECORDSDiagnostic Test Record.37Treatment Record. 39Body Weight Record. 41Lab Test Results Record.43My DIAGNOSISTypes of Cancer.45Diagnosing and Staging of Cancer.47My TREATMENTSurgery.51Radiation Therapy.52Chemotherapy.52Hormone Therapy.52Biological Therapy.53Clinical Research Trials.53Alternative Therapy.54Complementary Therapy.54Integrative Medicine. 55Questions About My Treatment Plan. 55perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119i
My DAILY LIFETalking to My Healthcare Team.59Talking to Children. 60Planning My Future. 61Eating Healthy. 63Coping With Daily Life. 63Managing Stress. 64FOR My CAREGIVERWhen I am the Caregiver.71Communicating With Doctors and Other Healthcare Professionals. 72Getting a Second Opinion?. 72Visiting the Doctor.73Handling Emergencies. 74Taking Care of Myself. 75Caregiver’s Bill of Rights.76Respite Care. 77Resources for Respite Care. 77MANAGING SYMPTOMSHair Loss (alopecia). 80Constipation. 81Diarrhea.83Fatigue.85Low Blood Counts.87Mouth Sores. 94Nausea and Vomiting. 96Pain. 98Peripheral Neuropathy .102Sexuality and Reproductive Changes.103SURVIVORSHIPCancer Survivorship.105Survivorship Resources.105Ohiohealth patient bill of rightsStatement of Patient Rights and Responsibilities.107Rights of Patients.108Responsibilities of Patients. 110My Perspective.111 iiOHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
m y c a r e T EAMTH IS SE CTIO N I NC LU D E S :Team Directory Telephone DirectoryFrom my perspective Laura, Patient“I feel as though I am receiving the best treatment in the country.Everyone is very professional. My family and friends are going throughthis with me and they also are proud of how well my whole treatment teamis taking care of me! I am grateful.”
My Team DirectoryNAME/PHONE ADDRESSPrimary Care DoctorName:Phone:Medical OncologistName:Phone:Radiation OncologistName:Phone:SurgeonName:Phone:Patient one:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-91191
NAME/PHONE ame:NurseName:CounselorName:DietitianName:Social WorkerName:Physical TherapistName:Occupational TherapistName:AmbulanceName:Medical Supply SourceName: 2OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
My Telephone DirectoryNAME/PHONE ADDRESSperspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-91193
NAME/PHONE ADDRESS 4OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
NAME/PHONE ADDRESSperspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-91195
m y CA L E N D ARTH IS S ECTI O N I N C LU D E S :Month-at-a-Glance From my perspective John, PatientPatient Family Advisory Council Member“What we’re doing (at OhioHealth) is to put this program togetherso that all people – caregivers, patients and even, I believe, doctors– learn more about what goes on with someone in recovery fromcancer.”
MonthYearSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceFRIDAY SATURDAYperspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-91197
FRIDAY SATURDAYSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceYearMonthReprints are available at OhioHealthCancerCare.com 8OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
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FRIDAY SATURDAYSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceYearMonthReprints are available at OhioHealthCancerCare.com 10OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
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FRIDAY SATURDAYSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceYearMonthReprints are available at OhioHealthCancerCare.com 12OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
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FRIDAY SATURDAYSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceYearMonthReprints are available at OhioHealthCancerCare.com 14OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
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FRIDAY SATURDAYSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceYearMonthReprints are available at OhioHealthCancerCare.com 16OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
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FRIDAY SATURDAYSUNDAY MONDAY TUESDAY WEDNESDAY THURSDAYMonth-at-a-GlanceYearMonthReprints are available at OhioHealthCancerCare.com 18OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
m y ME D I C I N ETH IS S ECTI O N I N C LU D E S :Medicine Record Medicine LogFrom my perspective Thomas Sweeney, MD, Medical Oncologist“Once the initial shock is over from the diagnosis, people start toregroup and make plans. And once they have a plan on how they aregoing to take care of the cancer and what their expectations are interms of survival, that allows them to get down to the business oftaking care of themselves and their cancer.”
Reprints are available at TH OhioHealthCancerCare.com CancerCall 1-800-752-911919 HowStart Stop Comments/WhyName DoseWhy prescribed By Dr.Often Date Date StoppedPlease record all medications including those prescribed by your doctor and those purchased over the counter. Place an“X” through the medicine when it is stopped.Medicine RecordMy Medicine
My MedicineMedicine RecordOHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives 20Please record all medications including those prescribed by your doctor and those purchased over the counter. Place an“X” through the medicine when it is stopped.HowStart Stop Comments/WhyName DoseWhy prescribed By Dr.Often Date Date StoppedReprints are available at OhioHealthCancerCare.com
Reprints are available at TH OhioHealthCancerCare.com CancerCall 1-800-752-911921 DateDrug Dose How Often Sunday Monday Tuesday Wednesday ThursdayUse these weekly logs to keep track of when and how often you take your medicine.Medicine LogMy MedicineFriday Saturday
My MedicineMedicine LogUse these weekly logs to keep track of when and how often you take your medicine.Friday SaturdayOHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives 22Drug Dose How Often Sunday Monday Tuesday Wednesday ThursdayDateReprints are available at OhioHealthCancerCare.com
my NOTESTH IS S ECTI O N I N C LU D E S :Appointment NotesFrom my perspective Donna, PatientPatient Family Advisory Council Chair“To me, it’s not a battle, it’s a journey. A battlesounds like something you can win and go on,but a journey is just what is the next phase.”
MY NOTESAppointment NotesUse these pages to prepare for appointments. You can also record information andupdates provided by your doctor and other members of your healthcare team.DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911923
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 24OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911925
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 26OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911927
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 28OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911929
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 30OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911931
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 32OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911933
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 34OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911935
DATE DOCTORnQuestions for the doctor:1.Answer:2.Answer:3.Answer:4.Answer:n ThingsI want to tell the :nOur plan:Reprints are available at OhioHealthCancerCare.com 36OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
m y REC O R D STH IS S ECTI O N I N C LU D E S :Diagnostic Test Record Treatment RecordBody Weight RecordLab Test Results RecordFrom my perspective Anne, Patient“To me, being thoroughly informed means five or ten years from now,I’ll have no regrets. As a patient, you have the responsibility to becomeeducated in order to pursue the course of treatment that’s right for you.”
Diagnostic Test RecordUse this record to track diagnostic tests. You may find it helpful to file a copy of the reportwith this record.Testdatetest locationperspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119results37
Diagnostic Test RecordUse this record to track diagnostic tests. You may find it helpful to file a copy of the reportwith this record.Test 38datetest locationresultsOHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
Treatment RecordPlease record all your treatments, dates and side effects.Treatment:Date:Side effects:Treatment:Date:Side effects:Treatment:Date:Side effects:perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911939
Treatment:Date:Side effects:Treatment:Date:Side effects:Treatment:Date:Side effects: 40OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
Body Weight RecordUse this record to keep track of your weekly weight.date Weight (Lbs/kg) What I Ate Todayperspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911941
Body Weight RecordUse this record to keep track of your weekly weight.date Weight (Lbs/kg) What I Ate Today 42OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
Reprints are available at TH OhioHealthCancerCare.com CancerCall 1-800-752-911943 -18.0150,000-400,0001,500 or GreaterCarries OxygenPart of Red Blood Cell that Carries OxygenHelps Clot the BloodType of White Blood CellRed Blood CellsHemoglobinPlateletsAbsolute Neutrophil Count (ANC)ANCPlateletsHemoglobinRed Blood CellsWhite Blood CellsTESTLeukopenia4,000-10,000 (4-10)Fight InfectionWhite Blood CellsSee SymptomsManagement:Low Blood CountsP. 87What You Can DoDATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATELow LevelsNormal LevelsFunctionTestYour physician will keep records of your laboratory values, but some people like to keep their own records.Lab Test Results Record
Lab Test Results RecordHemoglobinRed Blood CellsWhite Blood CellsTestHelps Clot the BloodPart of Red Blood Cell that Carries OxygenCarries OxygenFight InfectionFunction1,500 or Greater150,000-400,00012.0-18.04.7-6.14,000-10,000 (4-10)Normal peniaLow LevelsSee SymptomsManagement:Low Blood CountsP. 87What You Can DoYour physician will keep records of your laboratory values, but some people like to keep their own records.PlateletsType of White Blood CellDATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATE DATEAbsolute Neutrophil Count (ANC)TESTWhite Blood CellsRed Blood CellsHemoglobinOHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives 44PlateletsANCReprints are available at OhioHealthCancerCare.com
my DIAGNOSISTH IS S ECTI O N I N C LU D E S :Types of Cancer Diagnosing and Staging of CancerFrom my perspective Mark Cripe, DO, Surgeon“Many people, although it sounds odd initially, will go through their cancerdiagnosis, cancer treatment, and one year – maybe five years – down theline, will say, ‘You know, because I have had cancer, I am a better person. I lookat life differently. I am able to find out and differentiate what’s important.’A lot of people eventually – not initially – come to the place where cancer hasmade them a better person.”
MY DIAGNOSISCancer is a group of more than 100 diseases that have the following in common:nnnCancer cells grow, divide and replace themselves in an unorganized way. If the cellscontinue to grow and divide when they are not needed, a tumor can form. A tumor is anabnormal mass of tissue.Cancer cells can invade and destroy normal tissue.Cancer cells sometimes break away, travel through the body and start new tumors(metastasize).The term malignant tumor refers to a tumor that is cancer. A benign tumor is not cancer.Types of CancerCancer is described according to where it started (for instance, lung or breast), the typeof cancer cells involved (for instance, carcinoma) and if and where the cancer has spread(cancer stage).Carcinomas are cancers of certain skin cells (squamous cell carcinoma) and gland cells(adenocarcinoma). These cells are in the skin and also line body organs, such as the mouth,throat, stomach, intestines, rectum, lungs, bladder, ovaries, cervix and uterus.Sarcomas come from cells such as muscles or other connective tissue like bone orcartilage. Examples include osteosarcomas (bone), liposarcomas (fat), leiomyosarcomas(smooth muscle), rhabdosarcomas (skeletal muscle) and chondrosarcomas (cartilage).Lymphomas come from cells in the lymph tissue. Lymph tissue is found in many differentplaces in the body. Lymphomas are divided into two groups: Hodgkin’s Lymphoma andNon-Hodgkin’s Lymphoma. Lymphomas can further be divided into B-Cell Lymphomas(coming from B lymphocyte cells) and T-Cell Lymphomas (coming from T lymphocyte cells).perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911945
Leukemias are cancers of the blood. They can involve white blood cells (that fightinfection), red blood cells (that carry oxygen) and/or platelets (that clot the blood).For more information about your specific type of cancer, feel free to ask your healthcareprofessional. You can also find additional information online at www.cancer.gov. 46OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
Diagnosis and Staging of CancerWhen cancer is suspected, the doctor will talk with you about your health history andperform a physical exam. A biopsy, blood tests, scans and other tests may be orderedto determine the type of cancer, whether it has spread and, if so, to where. With thisinformation, your doctor can plan the treatment that is best for you.Tumor specimens and biopsyThe most accurate way to diagnose cancer is to examine and test the suspicious cells. Toget these cells, the doctor will have to do a biopsy, test body fluid where the abnormal cellsmay be or get a scraping of the cells (for instance, a pap smear). Cells are then placed onslides, stained with dye and examined under a microscope.Blood testsYour physician will order blood tests, including blood counts and tests for liver or kidneyfunction. Some types of cancer make proteins called tumor markers. A high level of atumor marker may mean that a certain type of cancer is in the body. Examples of tumormarkers include CA 125 (in ovarian cancer), CA 15-3 (in breast cancer), CEA (in ovarian, lung,breast, pancreas and gastrointestinal tract cancers) and PSA (in prostate cancer).Imaging studiesImaging studies are done to locate the tumor and determine its size:X-rays focus on a specific body part and project its image onto film. Because soft tissues(for instance, the colon) cannot be seen very well on X-rays, contrast agents such as bariummay be used. A fluoroscope is used to view a continuous, moving image.CT Scan looks at a selected cross section of the body.MRI provides cross-sectional images similar to CT scans but in multiple directions. NoX-ray is used. A powerful magnet makes certain parts of the body vibrate, resulting in acomputer-generated image.perspectives OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-911947
PET Scan A procedure during which a small amount of radioactive glucose (sugar) isinjected into a vein, and a scanner is used to make computerized pictures of areas insidethe body where the glucose is used. Because cancer cells often use more glucose thannormal cells, the pictures can be used to find cancer cells in the body.Endoscopy Using a flexible “scope,” the doctor is able to see inside body cavities, takepictures or take a biopsy. Examples of endoscopy include colonoscopy and sigmoidoscopy.Nuclear Medicine studies can find abnormalities in many different organs in the body,using a very small amount of radioactive substance.Ultrasound is a test that uses sound waves instead of X-rays to find tumors.StagingStaging is the process of finding out whether the cancer has spread and if so, where it hasspread. Staging is done at the time of diagnosis and is used to select the best treatment.There are several types of staging systems. In one system, a “Stage I” means the canceris only in one place; a “Stage 4” means the cancer has metastasized (spread) to a distantplace. Another staging system used is called the TNM system. “T” stands for tumor size, “N”stands for the number of lymph nodes that have cancer and “M” stands for the number ofmetastases.GradingCancer cells are also graded. The grade measures how abnormal the cancer cell lookscompared to a normal cell. A Grade I looks very similar to a normal cell; a Grade 4 looks veryabnormal. 48OHIOHEALTH OhioHealthCancerCare.com CancerCall 1-800-752-9119 perspectives
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perspectives OhIOhEALth OhiohealthCancerCare.com CancerCall 1-800-752-9119 INTRODUCTION “Perspectives: A Cancer Guidebook and Journal” was developed by OhioHealth with input from our patients and their family members who wanted to be more
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