ADOLESCENT AND YOUNG ADULT CANCER SURVIVAL GUIDE
FEATURING: LEONARD SENDER, MD & HEATHER HAWTHORNE, MD
JUNE 2015
Watch the AYA Cancer Survival Guide Video INTRODUCTION The Hyundai Cancer Institute at CHOC Children’s
Adolescent and Young Adult (AYA) Cancer Survival Guide
Every year 70,000 young adults aged 15-39 are diagnosed with cancer in the United States alone.
The CHOC Children’s Adolescent and Young Adult (AYA) Cancer Survival Guide Video and eBook are designed to help you face the challenges of your diagnosis, phase by phase. This CHOC Children’s AYA Cancer Survival Guide eBook supports you in setting measurable and achievable health goals, empowering you to become fully engaged in your journey from diagnosis to wellbeing. Whether you are a patient, caregiver or healthcare professional, this Survival Guide Video and eBook provide the expert insight, knowledge and information you need to make informed decisions.
The Survival Guide eBook is interactive and serves as a creatively driven resource developed to help you, along with your family and support network as you engage with your doctors and healthcare providers.
• Take your eBook with you to your appointments and treatments.
• Use it to help you focus and optimize the treatment plan you elect to pursue.
CHOC Children’s is dedicated to helping you survive and thrive. Thank you for selecting the CHOC Children’s AYA Cancer Survival Guide Video and eBook to accompany your journey from diagnosis to wellbeing.
iii TABLE OF 1. Introduction CONTENTS 2. Advice for Using This AYA Cancer Survival Guide eBook
3. Dr. Leonard Sender, MD
Introduction Introducing Dr. Heather Hawthorne Prevention & Lifestyle What is AYA Cancer? The Phases of the Journey • Diagnosis • Treatment • Healing • Wellbeing Difficult Questions
4. In Closing
iv 2 ADVICE FOR USING THE AYA CANCER SURVIVAL GUIDE & EBOOK ADVICE FOR USING THIS VIDEO & EBOOK:
• What you are about to review is comprehensive; we advise reading it in chapters, then exploring the content expansion links in each chapter.
• The AYA Survival Guide video and companion eBook are designed to provide guidance across the entire patient journey.
• This companion eBook contains all of the website links to the evidence based sources for the material presented in the video. Bring it with you to help guide you in consultations and patient/provider meetings whenever appropriate.
• Concentrate on the phase of the journey you are in now – don’t overwhelm yourself with information that is not relevant to you at this moment.
• Know that there are a few graphic photos and illustrations.
• All rights to this material are reserved and duplication is forbidden without express written consent.
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LEONARD Dr. Leonard Sender, M.D. is board certified both in Pediatrics and Pediatric Hematology/Oncology with professional interests strongly SENDER, MD centered on diagnosis, treatment, and epidemiology of Adolescent and Young Adult (AYA) cancer (patients aged 15 to 39). He is Medical Director of the Adolescent and Young Adult Cancer Program in the Hyundai Cancer Institute at CHOC Children’s and UC Irvine’s Chao Family Comprehensive Cancer Center.
To Learn More: - CHOC Children’s - UC Irvine Health Young Adult Cancer Services MY MESSAGE TO YOU AS A NEWLY DIAGNOSED CANCER PATIENT Dr. Sender, “Information can lead to knowledge and knowledge is power. You have to become empowered to ask the right questions and to find the right questions to get the information you need. The only way to get the type of treatment that is right for you that leads to the type of outcome we want for you is to become fully engaged in the process.”
8 Dr. Heather Hawthorne, M.D. is board certified in both Pediatrics and Pediatric Hematology/Oncology with an interest in all aspects of adolescent and young adult oncology, in particular solid tumors and long term effects of cancer treatment. She is the Clinical Director of the Adolescent and Young Adult Cancer Program at the Hyundai Cancer Institute at CHOC Children's Hospital.
To Learn More: - Dr. Hawthorne’s Bio - CHOC Children’s Specialists
MY MESSAGE TO YOU AS A NEWLY DIAGNOSED CANCER PATIENT Dr. Hawthorne, “The one thing I would tell a newly diagnosed AYA patient is that they are not alone, there is an entire team of people at CHOC Children's who care specifically about them and about patients their age.
At CHOC the age range for the AYA program includes all patients over 14 years old. The National Cancer Institute defines AYA as 15 to 39, but we feel our 14 year old patients can also benefit, so we include them as well.”
9 PREVENTION & LIFESTYLE National Cancer Institute on Physical Activity: ● Young women need to have the HPV - More on Physical Activity vaccine and regular pap smears NCI Breast Screening: ● Exercise - More on Breast Screening ● The right diet NCI Skin Screening: ● Self-examinations: Breast, Testicular, and - More on Skin Screening Melanoma
● If you notice anything unusual, bring it to NCI Testicular Self-Exam: your doctor’s attention immediately. Don’t - More on Testicular Self-Exam be afraid or embarrassed to bring anything up with your doctor. Your doctor is on your side and wants to help you prevent cancer NCI Breast Self-Exam: and other diseases. - More on Breast Self-Exam
10 WHAT IS AYA 70,000 AMERICANS AGED 15-39 ARE CANCER? DIAGNOSED WITH ADOLESCENT AND
The most common AYA YOUNG ADULT CANCER EACH YEAR. cancers are: Cancer in adolescents and young adults (AYAs) can behave like a different disease than cancer in children or in older adults. While significantly more research is needed to better AYA cancer outcomes, here you will find links to current research and articles on the most common AYA cancers including AYA issues regarding fertility preservation, survivorship, psychosocial and palliative care.
To Learn More:
- CHOC Adolescent and Young Adult Treatment Program
- A Snapshot of Adolescent and Young Adult Cancers
- Types of Children’s Cancer
11 "There are oncologists at CHOC who are specialists in AYA; there are also oncologists that are specialists in each particular type of cancer. So at CHOC we are able to combine the two and make sure that you have exactly the right combination of oncologists and surgeons and other specialists that you need for your AYA cancer journey." – Heather Hawthorne, MD
12 iv WHAT’S THE FIRST THING THAT I SHOULD DO?
● Stop your Doc! This campaign helps you ask the right questions so that you make sure you get the right doctor and right treatment for you
● Interested in having children? Talk to your doctor about fertility preservation and ask your doctor about the impact of your treatment on your reproductive chances
● Make sure the treatment you are about to undergo won’t harm your reproductive chances unless you’ve already discussed fertility preservation
To Learn More: - Stop A Doc WHAT TREATMENT OPTIONS - SeventyK Fertility Preservation DO I HAVE?
● To start, the surgeon will remove any tumors WHAT ARE THE MAIN that the oncologist decides are necessary and pertinent to remove. DIFFERENCES BETWEEN - More Info on Surgery PRACTITIONERS? ● The radiation oncologist would begin treating ● The oncologist tends to the medical side of you with radiation therapy in combination with treatment, and will take care of your whole hormone therapy if that is needed as well. body and health during chemotherapy and - More Info on Radiation Therapy radiation treatment. ● Sometimes, you may need all three treatment ● The surgeon is the one who will operate on options: a surgeon to remove tumors, an you if you need to have a tumor removed. oncologist to treat your whole body, and a radiation oncologist to treat you with radiation ● The radiation oncologist will be the one to therapy and chemotherapy. perform any radiation needed to kill cancer - More Info on Chemotherapy cells. To Learn More: ● The radiologist performs and reviews the - CHOC Surgery Guide for AYA Patients scans needed to determine where the cancer - Definition of Radiation is and how it’s growing or changing. - Definition of Chemotherapy
13 To Learn More: - Understanding Cancer Prognosis
14 HEALTH GOALS FOR THE DIAGNOSIS PHASE
LEARN MY DIAGNOSIS Type of cancer: Stage :
LEARN MY TREATMENT OPTIONS
MY PERSONAL HEALTH GOALS:
NOTE: The above goals are general goals. It is important to set your own measurable and achievable health goals.
15 16 To Learn More:
- NCI’s “Alpha List” for Cancer Terminology
- COG’s Glossary of Cancer Terminology
To Learn More:
- NCI’s Adolescent and Young Adult Treatment and Clinical Trials
17 SOME KEY TERMS YOU WILL NEED TO KNOW:
Pathology: The understanding of what your actual cancer looks like. The words tumor, mass, and lesion all mean the same thing: a group of abnormal cells. To find pathology a pathologist looks at the cells under a microscope to determine the type of cancer you have.
Staging: To determine if a cancer is just in the one spot where it was found, or has it moved to other body parts and organs? The staging classifications in the United States are the AJCC staging standards. This allows for continuity when discussing the stage of cancer across the States. Staging also helps define your treatment and your prognosis
.
To Learn More:
- NCI Pathology
- NCI Staging
18 19 DEDICATED AYA SPACE AT CHOC
At CHOC, we have dedicated space for AYA's so that they can meet other patients their age and feel like they have a place where they belong. If AYA patients are grouped with kids who are a lot younger than they are, or if they’re in an adult facility with much older patients, they really don't fit in, which makes the experience even more trying and difficult. In the AYA space, they can feel like they belong during their cancer journey.
TEEN ROOMS
Dr. Hawthorne, "Wanting to ‘hang out’ with others their age is developmentally normal for teens... The Teen Rooms have games and movies and activities, and they are a cool places to gather. And that is what teens want to do, just bond with other teenagers."
The Oncology Teen Room is on the 5th Floor. The general CHOC Teen Room is on the 2nd Floor.
20 DEDICATED TEEN ACTIVITIES AT CHOC
CHOC's AYA activities specialist coordinates extra opportunities to engage, connect, and be active and creative. Some of these are: teen night, yoga, karate, dance and hockey in the hallway, the annual Oncology Prom, life skills classes for cooking and crocheting and numerous other hobbies, and many other fun activities.
21 To Learn More:
- NCI Clinical Trials
- What Is a Clinical Trial?
22 HEALTH GOALS FOR THE TREATMENT PHASE
1) For outpatient treatment, get informed about when to call the doctor, what is an emergency, and what can wait until the next day. Have an action plan for:
Fever Rash Vomiting and diarrhea Shaking chills Confusion Mouth sores
2) Get informed about possible side effects and how they should be reported to the healthcare team.
For side effect of ______I should ______. For side effect of ______I should ______. For side effect of ______I should ______. For side effect of ______I should ______.
3) Gather family and community resources for practical and emotional support.
NOTE: These are general goals. It is important to set your own measurable and achievable health goals.
23 24 HEALTH GOALS FOR THE HEALING PHASE
NOTE: These are general goals. It is important to set your own measurable and achievable health goals.
25 Survivorship Guidelines
26 HEALTH GOALS FOR THE WELLBEING PHASE
NOTE: These are general goals. It is important to set your own measurable and achievable health goals.
“Mentorship among AYA patients can be a huge benefit. No matter what training the doctors or nurses have, no matter how much the parents love and care for you, they don't have the same experience and the same knowledge as someone who's been through it, and so we really need to bring that voice into the conversation. For the mentors, this is their opportunity to give back. So many want to do something positive at this stage of their journey, to start the next phase of their life. They have experienced so much and we really want to add their insight into the life of a new patient of a similar age and diagnosis.” – Heather Hawthorne, MD
27 28 SOME ONLINE SUPPORT The SeventyK Wellness Network is a place for Adolescent and Young Adult (AYA) cancer patients COMMUNITIES to go from Diagnosis to Wellbeing. It is a place for caregivers and healthcare professionals to share their knowledge. To Learn More:
- Join the SeventyK AYA Wellness Network Tips 4 Life is a curated database of real world wisdom segmented by phase (diagnosis, - SeventyK Overview Video treatment, healing, wellbeing), cancer type, age, location and more. - Get AYA Tips 4 Life and Connect with AYA Patients, Caregivers, and Providers Straight Talk is a service of Adolescent and - See Straight Talk’s List of AYA Online Young Adult program at Children’s Hospital of Support Sites Orange County. Check the Info Zone for links to other AYA sites.
29 4 IN CLOSING IN CLOSING
Dr. Sender, “The most important thing I can say to you as an AYA cancer patient is to be positive. Every patient is unique. Surround yourself with your friends, and be positive. There is a lot of great research going on with more and more survivors every day.”
Heather Hawthorne, "The diagnosis of cancer can be so disruptive to your life as a young person, but here at CHOC remember that you are not alone on this journey – our AYA team is here to support you to get back into school, to get back into work or college, or with whatever you plans and dreams are for your life."
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