519
national cancer institute information http://www.cancer.gov/
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH), one of eight agencies that compose the Public Health Ser- vice (PHS) in the Department of Health and Human Services (DHHS). The NCI is the Federal Govern- ment’s principal agency for cancer research and train- ing and coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other pro- grams with respect to the cause, diagnosis, preven- tion, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
The NCI’s Web site provides accurate, up-to-date information on many types of cancer, information on clinical trials, resources for people dealing with cancer, and information for researchers and health profession- als. Many of the NCI’s cancer information resources are accessible through the cancer information page on http://www.cancer.gov/. The NCI’s Web site has many resources available in Spanish
NCI publications on adolescent and young adult cancer:
Childhood Cancers Homepage http://www.cancer.
gov/cancerinformation/cancertype/cildhood/
This contains a collection of information sheets about types of childhood cancer, cancer screening and detection, treatment, clinical trials, and cancer literature.
NCI Research on Childhood Cancers http://cis.nci.
nih.gov/fact/6_40.htm. General facts about child- hood cancer and research endeavors.
Young People with Cancer: A Handbook for Par- ents http://www.cancer.gov/cancertopics/young-
people. This is an overview of childhood cancer di- agnosis, treatment, topics of concern, and additional information for parents.
Care for Children and Adolescents with Cancer:
Questions and Answers http://cis.nci.nih.gov/fact/1_
21.htm. A fact sheet detailing questions and answers about childhood cancer, childhood cancer centers, and research about treatment for childhood cancers.
Seer: Surveillance, epidemiology, and end results http://seer.cancer.gov/
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute is an authoritative source of information on cancer inci- dence and survival in the United States. The SEER Pro- gram currently collects and publishes cancer incidence and survival data from 14 population-based cancer registries and 3 supplemental registries covering approximately 26% of the United States population.
Information on more than 3 million in situ and inva- sive cancer cases is included in the SEER database, and approximately 170,000 new cases are added each year within the SEER coverage areas. The SEER Registries routinely collect data on patient demographics, pri- mary tumor site, morphology, stage at diagnosis, first course of treatment, and follow-up for vital status. The SEER Program is the only comprehensive source of population-based information in the United States that includes stage of cancer at the time of diagnosis and survival rates within each stage. The mortality data reported by SEER are provided by the National Center for Health Statistics.
The Cancer Statistics Branch (CSB) manages SEER program, and conducts research and developmental activities related to the surveillance of cancer patterns in the United States and monitors progress against
appendix: resources
appendix: resources 520
cancer. This monograph and other SEER publications/
monographs can be viewed at http://seer.cancer.gov/
under Publications.
Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, including SEER Incidence and Survival, 1975–2000. Bleyer A, O’Leary M, Barr R, Ries LAG (eds): National Can- cer Institute, NIH Pub. No. 06-5767, Bethesda MD, June 2006; also available at www.seer.cancer.gov/
publications/aya.
PdQ (Physician data Query)
http://seer.cancer.gov/cancer_information/doc.aspx?
viewid=9D617786-179B-4DB7-8664-885DD33 E7D51. NCI’s comprehensive cancer database includes summaries on cancer treatment, screening, preven- tion, genetics, and supportive care, and information on ongoing clinical trials. Some PDQ information is available in Spanish.
nci cancer Facts
http://cis.nci.gov/fact/index.htm
A collection of fact sheets that address a variety of cancer topics. Fact sheets are frequently updated and revised in accordance with the latest cancer research.
What you need to Know about
http://www.cancer.gov/cancer_information/doc.aspx?
viewid=920AFA90-5547-4739-8D2D89968F77A87D A publication series that provides information on many types of cancer. Each publication includes infor- mation about symptoms, diagnosis, treatment, emo- tional issues, and questions to ask your doctor.
international resources
http://cis.nci.nih.gov/resources/
internatinonal.htm
A list of cancer resources that may be particularly help- ful to information seekers living outside the United States.
national institutes of Health resources http://cis.nci.nih.gov/resources/nci.htm
A compendium of cancer-related information available from other NIH institutes, offices, and online resources.
Medlineplus
http://www.nlm.nih.gov/medlineplus/
The National Library of Medicine’s MEDLINEplus Web site includes links to health topics, drug informa- tion, a medical encyclopedia, a medical dictionary, health news, directories of doctors, dentists, and hos- pitals, and other resources and health organizations, including MEDLINE/PubMed. MEDLINE/PubMed is the National Library of Medicine’s database of refer- ences to more than 14 million articles published in 4,800 biomedical journals.
The National Cancer Institute’s Cancer Information Service (CIS)
provides the latest and most accurate cancer information to patients, their families, the public, and health professionals. The CIS is a free public service of the NCI, and serves those in the United States, Puerto Rico, the United States Virgin Islands, and the Pacific Islands. The CIS provides personalized, confidential responses to specific questions about cancer.
By telephone: United States residents may call the CIS toll free at 1-800-4-CANCER (1-800-422- 6237). CIS information specialists answer calls Monday through Friday from 9:00 a.m. to 4:30 p.m.
(caller’s local time), in English or Spanish. Callers with TTY equipment may call 1-800-332-8615.
Callers also have the option of listening to recorded information about cancer 24 h a day, 7 days a week.
Online: CIS information specialists also offer online assistance in English Monday through Friday from 9:00 a.m. to 11:00 p.m. Eastern Time through the LiveHelp link at http://www.cancer.gov on the Internet.
appendix: resources 521 Information about Clinical Trials
http://clinicaltrials.gov/ClinicalTrials.gov provides regularly updated information about feder- ally and privately supported clinical research in human volunteers. This site includes information about a tri- al’s purpose, who may participate, locations, and phone numbers for more details.
Office of Cancer Survivorship http://cancercontrol.cancer.gov/ocs/
The mission of NCI’s Office of Cancer Survivorship (OCS) is to enhance the quality and length of survival of all persons diagnosed with cancer and to minimize or stabilize adverse effects experienced during cancer survivorship.
Develops an agenda for the continuous acquisition of knowledge concerning the problems and chal- lenges facing cancer survivors and their families.
Supports studies to increase the length of survival for cancer patients and improve the quality of sur- vival of all individuals diagnosed with cancer and their families, including those that involve preven- tion of subsequent disease and disability.
Promotes the dissemination of information to pro- fessionals who treat cancer patients and to the pub- lic concerning the problems and needs of cancer survivors and their families.
living Beyond cancer: Finding a new Balance http://deainfo.nci.nih.gov/adiSOry/pcp/
pcp03-04rpt/Survivorship.pdf
This report of the President’s Cancer Panel, a Presiden- tial advisory committee charged with overseeing the development and execution of the National Cancer Pro- gram, is the first to take a life span approach to describ- ing cancer survivorship issues, focusing particularly on the posttreatment period. In addition to identifying issues common to people regardless of their age at diag- nosis, it enumerates challenges specific to those diag- nosed as children (ages 0 to 14 years), adolescents and young adults (ages 15 to 29 years), adults (30 to 59 years of age), and older adults (ages 60 years and older). The findings and 17 recommendations are drawn from testi-
mony received at 5 meetings conducted between May 2003 and January 2004, as well as additional data gath- ering. The nearly 200 meeting participants included survivors, caregivers, healthcare providers, advocates, and others who candidly described their experiences of life after cancer and the issues of providing care and support. Testimony was provided both in formal hear- ings and at evening Town Hall meetings.
lieStrOng young adult alliance www.livestrong.org/youngadult
The mission of the LIVESTRONG Young Adult Alli- ance is to improve survival rates and quality of life for young adults living with cancer by promoting relevant research and the delivery of patient care, generating awareness of the issue, being a voice for young adults with cancer, and advancing helpful community-based programs and services.
Fertile Hope
www.fertilehope.org
Fertile Hope is a national nonprofit organization dedi- cated to providing reproductive information, support, and hope to cancer patients whose medical treatments present the risk of infertility.
People living With cancer www.peoplelivingwithcance.org
People Living With Cancer, the patient information website of the American Society of Clinical Oncology (ASCO), is designed to help patients and families make informed healthcare decisions. The site has specific sections for adolescents and for young adults, and pro- vides information on more than 85 types of cancer, clinical trials, coping, side effects, a “Find an Oncolo- gist” database, message boards, patient support orga- nizations, and more.
Planet cancer
www.planetcancer.org
Planet Cancer is a nonprofit organization that supports young adults with cancer in the 18- to 30-year age
appendix: resources 522
range. Planet Cancer’s dynamic online community uses humor, current news, and interactive forums to help young adults create a network of peer support, as they communicate with other survivors worldwide about issues they face and how to cope with the dis- ease. Planet Cancer also hosts several face-to-face retreats throughout the year, forming strong friend- ship bonds among young adult cancer patients and survivors.
Ulman cancer Fund for young adults http://www.ulmanfund/index.asp
The Mission of The Ulman Cancer Fund for Young Adults is to provide support programs, education, and resources – free of charge – to benefit young adults, their families, and friends who are affected by cancer, and to promote awareness and prevention of cancer.
young Survival coalition www.youngsurvival.org/
The Young Survival Coalition (YSC) is the only inter- national, nonprofit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer.
Through action, advocacy, and awareness, the YSC seeks to educate the medical, research, and legislative communities and to persuade them to address breast cancer in women aged 40 years and under. The YSC also serves as a point of contact for young women liv- ing with breast cancer.
ital Options international www.vitaloptions.org
Vital Options is a communications support and advo- cacy organization whose mission is to facilitate a global cancer dialogue through communications technology.
teens living with cancer www.teenslivingwithcancer.org
The original internet resource for 13-to 18-year-olds with cancer, their friends, and families.
group loop
www.grouploop.org
Online discussion boards with moderators; only can- cer patients are eligible to participate.
teen impact
www.teenimpactprogram.com
Children’s Hospital of Los Angeles site that has some general resources for teens.
realtime cancer www.realtimecancer.org
Based in eastern Canada but with worldwide applica- tion, this site offer personal insights by young adults with cancer.
leukemia and lymphoma Society www.leukemia.org
The Leukemia and Lymphoma Society is the world’s largest voluntary health organization dedicated to fund- ing blood cancer research, education, and patient ser- vices. The Society’s mission: Cure leukemia, lymphoma, Hodgkin lymphoma, and myeloma, and improve the quality of life of patients and their families.
national comprehensive cancer network (nccn) www.nccn.org
An alliance of 19 of the world’s leading cancer centers, is an authoritative source of information to help patients and health professionals make informed deci- sions about cancer care. Through the collective exper- tise of its member institutions, the NCCN develops, updates, and disseminates a complete library of clini- cal practice guidelines. These guidelines are the stan- dard for clinical policy in oncology.
look good – Feel Better www.lookgoodfeelbetter.org
A free, nonmedical, national public service program to help women offset appearance-related changes from
appendix: resources 523 cancer treatment. There is also a special program called
2bMe for teenagers.
cancercare
www.cancercare.org
A nonprofit organization that provides free profes- sional counseling and educational programs for young adults with cancer and their loved ones.
Health insurance www.tonikplans.com.
BlueCross & Aetna plans for young adults in California and Colorado
www.aflac.com/us/en/individuals/cancer.aspx.
Cancer insurance for young adults with cancer.
information about Specific cancers (see also www.cancer.gov)
Sarcoma
The Kristin Ann Carr Sarcoma Fund www.sarcoma.com
Liddy Shriver Sarcoma Initiative www.liddyshriversarcomainitiative.com Breast Cancer
Young Survival Coalition www.youngsurvival.org See additional information above
Living With It www.livingwithit.org Another resource for breast cancer support Cervical Cancer
Papsmear www.papsmear.org Colon Cancer
Rolling to Recovery www.rollingtorecovery.com Ovarian Cancer
www.gildasclub.org
Many local Gilda’s Clubs offer a group called “Living with cancer in your 20s & 30s.”
Educational-Recreational Events/Camps
Camp Make-A-Dream www.campdream.org. Hosts young adults at Camp Make-A-Dream in Gold Creek, Montana for weeklong retreats
First Descents www.firstdescents.com. Free, seven- day kayak camp in Colorado for young adults with cancer.
Tip-of-Toes www.tip-of-toes.org. Expeditions in Canada and points north for teens and young adults with cancer
Teenage Cancer Trust www.teencancer.org Interna- tional conferences on cancer and the adolescent held every even year in England
Survivorship guidelines
http://www.survivorshpguidelines.org.
The Children’s Oncology Group has posted guidelines for long-term follow-up of pediatric cancer that may help the adolescent and young adult with cancer, including following topics:
Introduction to Long-Term Follow-Up Emotional Issues
Finding Appropriate Healthcare after Cancer Health Promotion via Diet and Physical Activity Educational Issues
Female Health Issues Male Health Issues Hearing Problems Dental Health Pulmonary Health Bleomycin Alert Kidney Health
Liver Health and Hepatitis Bone Health
Avascular Necrosis Skin Health Splenic Precautions Heart Problems Eye Problems
Peripheral Neuropathy Raynaud’s Phenomenon
appendix: resources 524
Hypopituitarism
Growth Hormone Deficiency Hyperprolactinemia
Thyroid Problems
Central Adrenal Insufficiency Precocious Puberty
Limb Salvage after Bone Cancer Scoliosis and Kyphosis
Breast Cancer
Reducing the Risk of Second Cancers
Steps for living
www.StepsForliving.org
Information about events and resources for survivors of cancer.
525
Subject index
A
access to care 61
access to care after therapy 443 survivors of young adult cancer 443
transitional care concerns among Nurses in the children´s oncology group 446
transition of care: key issues for childhood cancer survivors 445
young adult survivors of childhood cancer 444 action plan for pediatric and adult disciplines 346 acute lymphoblastic leukemia 83
age-specific incidence 84 classification system 83 clinical presentations 86
compared with incidence of other leukemias 85 Gender-specific incidence 84 85
Gender-specific survival 93 incidence 84
incidence trends 85 86 molecular biology 86 outcome 92
race/ethnicity-specific incidence 85 risk factors 85 87
survival 92
toxicity and late effects 91 treatment 88 95 96 acute myelogenous leukemia 99
biology/pathology 103 clinical presentation 104 clinical trials participation 105 diagnosis 104
etiology 100
FAB classification 103 Gender-specific incidence 100 incidence 99 100
outcome 106 pathology 103 prognostic factors 102 survival 105
––
– –
–– –– –– –– –– –– –– – –– –– –– –– –– ––
survival trends 102 symptoms and signs 104 toxicity and late effects 106 treatment 104
acute toxicities 21
adolescent and young adult committee 32 33 adolescent and young adult conference 32 adolescent and young adult teams 350 adolescent and young adult units 350 adult oncology teams 348 349 adverse effects of medication
adverse effects of medication and non-compliance 358 aims of care and the patient pathway 342
American Academy of Hospice and Palliative Care 34 American Cancer Society 31
aminopterin 28
anaplastic large cell lymphoma - systemic 136 survival 138
treatment 137 139 Archie Bleyer 32 arsenic 28
assessment of compliance 355 attitudes towards drug compliance 358
B
B-Cell non-hodgkin lymphoma 134 anaplastic large cell lymphoma 136 burkitt lymphoma 134
diffuse large B-Cell lymphoma 135 benzol 28
biological differences 51
acute lymhoblastic leukemia survival 51 Ewing sarcoma 52
Ewing tumor 52 bone 203
Boston Children´s Hospital 30
brain tumors: see central nervous system tumors 151 breast cancer 293
–– ––
–
––
–– –
–– –
Subject index 526
adjuvant chemotherapy 298 adjuvant endocrine therapy 298 adjuvant therapies 297
breast cancer during pregnancy 303 diagnosis 295
epidemiology 294 fertility Issues 302 high risk futures 303
histology-specific survival 300 incidence 294
incidence trends 295 mortality 301 mortality trends 302 outcome 299
prognostic characteristics 296 psychosocial issues 305
race/ethnic differences mortality 302 race/ethnicity-specific incidence 294 295
risk reduction in women with inherited predisposition to breast cancer 304
stage-specific incidence 294 surgery 297
survival 299
survival trends 299 300 survival trends by stage 300 treatment 297
C
cancer-specific vs. young-adult specific teams 344 cancers of adult growth and maturation 40 cancers of aging 39
cancers of early growth 40 cancers of intermediate growth 39 cancers of maturation 39 causes of death 10 CCG 29
centralization of care and clinical trials access 344 central nervous system tumors 151
acquired immune deficiency syndrome (AIDS) 158 central brain tumor registry of the United States
(CBTRUS) 153 chemotherapy 167 clinical presentation 163 cowden disease 162 diet 157
electromagnetic fields and radiofrequencies 156 epilepsy and head injury 158
etiology 156
familial aggregation 163 ––
–– –– –– –– –– –– –– –– – –– –– ––
––
–– –– –– ––
Gardner syndrome 162
histology-specific incidence 154 155 156 incidence 152 155
integrated care 169 Ionizing radiation 156 li-fraumeni syndrome 161
multiple endocrine neoplasia syndromes 162 multiprofessional priorities 164
n-nitroso compounds 157 neurofibromatosis 159 neurosurgery 165
nonsteroidal anti-inflammatory drugs 158 other occupational factors 157
pesticides and agriculture 157 predisposing conditions 159 protective factors 158 radiotherapy techniques 166 risk factors 156
signs and symptoms 163 simian virus 40 (SV40) 158 smoking 157
symptom control 168 treatment 165 tuberous sclerosis 161 turcot syndrome 162 U.S. SEER database 153 United Kingdom Data 153 Von Hippel-Lindau Syndrome 159 challenges and opportunities 501
accruals to national cancer treatment trials 512 cancer survival trend in the U.S. and Australia 511 current status of rate of progress 502
delays in diagnosis 508 family/community factors 508
family/community reasons for lack of progress 505 future directions and interim solutions 512 healthcare insurance 504
health professional factors 508
health professional reasons for lack of progress 506 implications for other age groups 511
international perspectives and global challenge 511 multidisciplinary nature of pediatric oncology team 506 personal/patient factors 507
personal/patient reasons for lack of progress 504 place of diagnosis and treatment: facility 509
prioritization of challenges and potential solutions 507 reasons for lack of progress 503
recommendations to increase clinical trial activity 513 societal/cultural contributions 508
societal/cultural reasons for lack of progress 507 chemotherapy 18
–– –– –– –– –– –– –– –– –– –– –– –– –– ––
–– –– –– –– –– –– –– –– –– –– –
Subject index 527 children´s cancer group (CCG) 29
Children´s cancer study group 29 children´s oncology group (COG) 23 29 classification system 2
international classification of childhood cancers (ICCC) 2 international classification of diseases for oncology
(ICD-O) 2 clinical trials 71
acute lymphoblastic leukemia 71 benefit society 71
personal benefit 71 COG 23 29
COG Survey 33 colchicine 28 colorectal cancer 331
adjuvant chemotherapy 337 clinical presentation 334 diagnosis 334
incidence 331 incidence trends 333 outcome 337
race/ethnicity-specific incidence 332 radiation therapy 337
stage-specific incidence 333 stage-specific survival 338 staging 335
surgery 336 survival trends 338 treatment 335
comparative survival rates 256 compliance 31
conditional survival 12
1-, 2-, 3-, 5-year conditional survival 14 observed vs. relative conditional survival 13 crab 27
D
dame cicely saunders 34
defecit in survival and mortality improvement 76 77 correlation of survival and mortality rate 77 reasons 77
role of clinical trials 78 survival by types of cancer 77 delayed complications 21
azoospermia 22 cardiomyopathy 21 growth retardation 21 neuropsychologic effects 21 ovarian damage 21 ––
–– –
–– –– –– –– –– –– ––
––
–– ––
–– –– –
delay in diagnosis 66
pediatric oncology group 66
the canadian childhood cancer curveillance and control program 67
United Kingdom 66
demographic factors of drug non-compliance 358 Dennis Burkitt 28
depression 31
developmental malignancies 43 diagnosis 15
delay in diagnosis 16 pathologic 16 radiology 16
self breast examination 16 self examination 16 self skin examination 16 self testicular examination 16 signs 15
symptoms 15
differentiated thyroid carcinoma 260 clinical presentation 262 diagnosis 262
epidemiology 260 etiology/pathology 260 female:male incidence ratio 260 incidence 260
late effects 264
race/ethnicity-specific incidence 261 treatment 263
direct methods of compliance assessment 356 drug adherence 353
drug compliance 353
E
Edwin Smith Egyptian Papyrus 27 Elisabeth Kubler-Ross 34 embryonal/fetal cancers 39 ene-environment interactions 54 epidemiology 2
epidemiology monograph 2 Epstein-Barr virus 28 ethical issues 431
Assent as Empowerment or Assent Negotiated 436 Assent at Diagnosis and Assent at Relapse 435 Assent for Treatment and Assent for Research 435 Biological Basis for Ongoing Development of Compe-
tence in Adolescents 438 Case Example 432
Impact of Symptom Control on Therapeutic Decisions 437 ––
–
–– –– –– –– – –– –– –– –– –
–– ––
––
Subject index 528
Involvement of adolescents in decisions about their care Palliative Care Issues at Diagnosis 437432
Palliative Care Issues at the End of Life 438 Professional and Family Roles 436 437 Reflections on the Concept of Assent 434 Reflections on the concept of palliative care 436 etiology 15 52
Australia 53 BK virus 53
Carcinoma of cervix and uterus 54 chemicals 53
Chernobyl accident 52
clear-cell adenocarcinoma of the vagina or cervix 52 diet 53
diethylstilbestrol 52 Epstein-Barr virus (EBV) 53 Helicobacter pylori 53 herpes simplex virus type 2 54 HIV1 53
HTLV1 53
human papilloma virus 54 infections 53
JC virus 53 melanoma 53 54
nasopharyngeal carcinoma 54 polyoma virus 53
postnatal growth rate 54 Radiation-induced 52
simian virus 40 (SV40) 53 54 55 sunlight 53
tobacco 53 Viruses 53
european journal of cancer 34 Ewing Sarcoma 209
Anatomic location 211 Biology and Pathology 209 Cytogenetics/karyotype 210 Diagnosis 211
Incidence 209 Late Effects 214
Radiographic characteristics 211 survival 212 213
Treatment 212
expanded patient pathyway model 345
F fertility 21 Fibiger 28 – –– –– – –– –– –– –– –– –– –– –– –– –– –– –– –
–– –– –– –– –
financial challenges 20 financial issues 489
employment 493
financial stability: education and marital status 498 health and life insurance 497
health insurance 492 major financial issues 490
major financial issues for the young adult 492 older young adults: financially independent patient or
survivor 491
reduced work and loss of income 492 the financially dependent patient 490
U.S legislation addressing health-related financial issues first adolescent oncology unit 30494
first book on adolescent oncology 31 future health 451
alcohol 460
American Cancer Society guidelines on nutrition and physical activity 458
asymptomatic survivors 454 components of health promotion 457 dental care 462
diet and physical activity 457 health behavior counseling 456 healthcare of cancer survivors 452 lifestyle recommendations 457
multiplicity of factors contibuting towards cancer-related morbidity 452
Promoting Healthy Lifestyles 456 risk-based healthcare of survivors 454 sun protection 462
symptomatic survivors 455
tobacco potentiation of cardiopulmonary dysfunction caused by cancer therapies 459
tobacco use 459
wellness vs. illness models 453
G Galen 28
Gender differences in incidence 50 adrenocortical tumors 50 bladder carcinoma 50 bone tumors 50 brain tumors 50
gonadal germ cell tumors 50 leukemia 51
melanoma 50
nasopharyngeal carcinoma 50 ––
–– –– – –– –
––
–– –– –– ––
–– –– – ––
–– –– –– ––
Subject index 529 thyroid cancer 50
genetic predisposition 54 genetic susceptibility 54
adenomatous polyposis coli (APC) 55 ataxia telangiectasia 54
BRCA1 mutation 55 BRCA2 mutation 55
DNA mismatch repair genes 55 fanconi pancytopenia 54 gene environment interactions 54 hereditary dysplastic syndrome 54 li-fraumeni syndrome 54
multiple endocrine neoplasia syndromes 54 neurofibromatosis 54
nevoid basal cell carcinoma syndrome 54 TP53 germline mutations 55
turner syndrome 54 xeroderma pigmentosa 54 genitourinary tract tumors 249 Gerald Murphy 30
Giovanni Morgagni 28
H
Harold E. Varmus 28 Harvey 28
health-related quality of life 387
barriers to the use of HRQL measures 394
facilitating clinical decision-making with HRQL data generic and cancer-specific HRQL measures 389394 HRQL dimensions 388
HRQL Measurement and Clinical Cancer Care 390 measuring HRQL in adolescents vs adults 389 risk prediction 395
selected HRQL measures for adolescents and young adults 392 395
self report vs. proxy reports of HRQL 390 hindu epic 28
hippocrates 27
history of adolescent oncology 27 HIV epidemic 7
hodgkin lymphoma 111 age-specific incidence 111 biopsy 117
clinical presentation 116
compared with incidence of other lymphomas 112 diagnosis 116
etiology 113
Gender-specific incidence 112 113 –
–– –– –– –– –– –– –– –
––
–– –– ––
–
–– –– –– –
Gender-specific mortality 119 hematology 116
histology 116 imaging 117 incidence 111 112 incidence trends 114 late effects 121 mortality 119 outcome 119 121
race/ethnicity-specific incidence 113 race/ethnicity-specific mortality 119 race/ethnicity-specific survival 120 risk factors 113 115
specific treatment trials 121 staging 117
survival 120 survival trends 120 symptoms 116 treatment 118 Homer 29
I ICCC 2 ICD 2
improved classification system 55 improving psychological support 344 incidence 3
age-specific incidence 3
cancer-specific incidence trends 7 Gender-specific incidence 3 50 Gender-specific incidence trends 7 incidence in females 7
incidence in males 7 incidence trends 6 7 50 51 male vs. female incidence 4 50 race-specific incidence 4 5 race/ethnicity-specific incidence 5 incidence trends 6 8
increasing incidence, United Kingdom 50 51 indirect methods of compliance assessment 356 infertility 21
information and resources 469
criteria for evaluating medical and health information websites 471
internet-based health information 470
methods of sharing medically related information 470 the value of sharing medical information 469 472 web resources for information on wellnes and disease
prevention 479 ––
–– –– –– –– –– –– –– –– –
–– –– –– –– ––
– –– ––
Subject index 530
web resources for obtaining appropriate medical care web resources for obtaining medical information 475474 web resources for psychosocial issues and survivor
advocacy 484
intergroup rhabdomyosarcoma Study Group (IRSG) 29 intermediate incidence peak 39
international classification of childhood cancers (ICCC) 2 international classification of diseases for oncology (ICD-
O) 2 intimacy 20
intracranial germ cell tumors 169 epidemiology 169
incidence 170 incidence trends 170 late effects 175
national registry reports 172 phase 2 trials 171
phase 3 Trials 172 quality of life 175 survival 173 174 175
tumor markers and pathology 170 invasive cancer 2
IRSG 29
J
James Wallace 30 John Hunter 28 Joseph Recamier 28
K
kidney tumors 252 incidence 252 survival 253 survival trends 253 Kohler, Milstein, and Jerne 28
L
lack of clinical trial participation 20 lack of clinical trials 20
late effects of treatment 411 bladder function 421
cancer survivorship future research opportunities 425 cardiovascular function 415
delivering survivorship care 423 –
––
–– –– –– –– ––
–– –
–– ––
endocrine function 418 gastrointestinal function 421 genitourinary function 420 gonadal function 419
late effects from common therapeutic exposures 412 late mortality 413
medical issues 413
musculoskeletal and related tissues 422 omprehensive late effects evaluation 424 other endocrinopathies 420
pituitary function 419 pulmonary function 417
recommendations for screening 424 renal function 420
second primary neoplasms 413
second primary neoplasms after breast cancer 415 second primary neoplasms after hodgkin lymphoma 414 second primary neoplasms after non-hodgkin lymphoma second primary neoplasms after testicular cancer 415415 Leonide of Alexandria 28
liver tumors 311
angiosarcoma of liver 317 benign tumors 317 chemotherapy 321 cholangiocarcinoma 317 clinical presentation 316 diagnosis 316
difference in hepatocellular carcinoma between children and adults 324
differential diagnosis 317
embryonal (undifferentiated) liver sarcoma 317 epidemiology 312
etiology 313
fibrolamellar hepatocellular carcinoma 314 focal nodular hyperplasia 318
future perspectives 324 gender-specific incidence 313 hepatoblastoma 315
hepatocarcinogenesis 316 hepatocellular carcinoma 314 incidence 312
incidence of liver vs. intrahepatic bile duct cancer 312 incidence trends 313
liver cell adenoma 318 mortality 323 outcome 323
outcome of hepatocellular carcinoma in adults 323 pathology/biology 314
risk factors 313 staging 318 ––
–– –– –– –– –– –– –– ––
–
–– –– –– – –– –– –– –– –– –– –– –– –– –– –
Subject index 531 survival 323
transitional liver cell tumor 315 treatment 319
Louis Leaky 27
lymphoblastic lymphoma 140 biology/pathology 140 survival 141 142 143 treatment 141
M
malignancies of the ovary 219 biology/pathology 221
biology of ovarian germ cell tumors 221 classification 220
diagnosis 223
diagnostic evalution 224 epidemiology 220 incidence 221 outcomes 231
ovarian borderline tumors 223 ovarian epithelial tumors 223
ovarian tumors of low malignant potential 223 serum tumor marekers of ovarian neoplasms 222 sex cord-stromal tumors 223
signs and symptoms 223 staging 225
staging of dysgerminoma and gonadoblastoma 226 staging of epithelial ovarian cancer 227
staging of ovarian germ cell tumors 226
staging of ovarian tumors of low malignant potential 228 staging of sex cord stromal tumors 227
surgery 224 226 survival 230
survival of epithelial tumors 231 survival of germ-cell tumors 231
survival of ovarian tumor of low malignant potential 232 survival of sex cord stromal tumors 231
survival trends 230 treatment 228
treatment of dysgerminomas 228 treatment of granulosa cell tumors 229 treatment of ovarian epithelial tumors 230 treatment of ovarian germ cell tumors 228
treatment of ovarian tumors of low malignant potential treatment of Sertoli-Leydig cell tumors 229230
treatment of sex cord stromal tumors 229 malignant melanoma 271
adjuvant therapy 285 ––
–
–– –
–– –– –– –– –– –– –– –– –– –– –– –– –– –– –– –– – ––
–
biochemotherapy 286 biotherapy 286 blood tests 284 chemotherapy 286 clinical presentation 279 computed tomography 284 environmental factors 278 epidemiology 272 etiology 276
familial melanoma 277 female:male incidence ratio 274 Gender-specific incidence 274 imaging studies 284
immunosuppression 276
incidence by anatomic location 274 275 incidence trends 272 275
interferon 285
lymph node dissection 281 283 lymph node mapping 282 magnetic resonance imaging 284 nevus phenotype 278
nonsurgical therapy 285 pathology 279
positron emission tomography 285 primary skin tumor 281
prognosis 286
race/ethnic-specific incidence 273 radiotherapy 286
risk factors 276 sentinel node 281
stage and thickness incidence trends 275 staging 280 283
sun and other ultraviolet exposures 279 surgery 281
surgical treatment of spitz nevus 283 TNM classification 280
treatment of measurable disease 286
treatment treatment of the primary tumor 282 ultrasound 284
vaccine therapy 286
xeroderma pigmentosum 276 Marie Curie 28
medullary thyroid carcinoma 265 clinical presentation 266 diagnosis 266
epidemiology 265 etiology/pathology 265 late effects 268 treatment 267 Michael Bishop 28 models of care 341 ––
–– –– –– –– –– –– –– –– –– –– –– –– –– –– –– –– –– –– –– –
–– –– ––
Subject index 532
models of patient-physician relationship 360 mortality 7
age-specific incidence 7 ethnic-specific mortality 8 Gender-specific incidence 7 Gender-specific mortality trends 9 mortality incidence ratio 7 8 mortality rate in females 8 mortality rate in males 8 mortality trends 8 9 race-specific mortality 8 race-specific mortality trends 10 mustard gas 28
N
national cancer act 1
national wilms´ tumor study group (NWTS) 29 nattional cancer institute (NCI) 23
NCI 23
needs as perceived by young adults 343 Nobel Prize 28
non-germ-cell genitourinary tract tumors 249 biology/pathology 250
clinical presentations 251 diagnosis 251
epidemiology 250 etiology 250 lead-time bias 250 treatment 251
treatment of prostate cancer 251 treatment of renal cell carcinoma 251
treatment of transitional bladder carcinoma 251 non-hodgkin lymphoma 127
age-specific incidence 128 clinical presentation 132 cytogenetics 131 etiology 130
Gender-specific incidence 129 histology 130
Histology-specific incidence 128 incidence 128
race/ethnicity-specific incidence 129 130 risk factors 130
staging 132 133 survival 144 survival trends 144 noncompliance 31 now and then news 30 NWTS 29
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O
on death and dying 34 osteosarcoma 204
anatomic location 205 incidence 204 205 late effects 208 pathology/staging 205
radiographic characteristics 206 survival 208
treatment 207
overcoming barriers to clinical trial participation 79 adolescent and young adult Initiative 79 children´s oncology group 79
national cancer institute 79
P padua 28
paradigms of care, communication, interaction 348 participation deficit 72
barriers 75 Gender 73
race/ethnicity 72 73 reasons 73 75
the american college of aurgeons 74 trends 73
types of cancer 73 74
past and current practice plans 346 patterns of care 346
pediatric oncology group (POG) 29 pediatric oncology teams 347 personal behavior 66 personal belief 66 personal knowledge 66 peyton rous 28 pierre curie 28 plymouth rock 28 poets and writers inc 30 POG 29
prostate cancer 255 biologic differences 255 provider impediments 64
american academy of pediatrics consensus statement 65 american federation of clinical cncologic Societies
consensus statement 65 clinical trial availability 65 clinical trial enrollment 65 lack of a primary physician 64 limited choice of physician 64 ––
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Subject index 533 national Cancer Data Base 65
site for treatment 65
specialist vs generalist referral 64
United Kingdom Children´s cancer study group 66 utah state registry 65
psychological support 365 after treatment 367 at diagnosis 366 at end of treatment 367 body image 368
children´s hospital of Los Angeles teen impact program during treatment 367371
employment 369 fertility 368
future career goals 370 long-term issues 368 positive body image 369
sense of identity and independence 369 sexual identity 370
treatment approaches to meet developmental challenges psychosocial care 19370
psychosocial support 375 available information 376 coping 380
emotional issues 378 existential/spiritual issues 381
importance of social, peer, and family support 380 information seeking 376
intellectual issues 376 interpersonal issues 377 pain and painful procedures 376 posttraumatic effects 379 practical issues 376 psychological distress 378 relationships with peers 378 relationship with parents 377 school and work 377 support groups 380
the hospitalization experience 376 uncertainty 381
R
radiation therapy 18 ramayana 28
recommendations for compliance improvement 359 rehabilitation and exercise 401
activity and participation 404 ––
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body structure and function 403
facilitating rehabilitation participation 408 general principles of rehabilitation 402 other specific interventions 406 palliative care 409
physical activity 404
rehabilitation and rxercise needs 402
rehabilitation for the acutely ill, isolated, or hospitalized rehabilitation intervention 404408
rehabilitation Precautions and contraindications 406 reproductive health 20
risk factors 15 chemotherapy 15
clear cell adenocarcinoma 15 diet 15
diethylstilbestrol 15 environmental causes 15 radiotherapy 15 solar exposure 15 tobacco 15 Roswell Gallagher 30
Roswell Park Memorial Institute 30 Rudolph Virchow 28
S sexuality 20 Shakespeare 29 Sidney Farber 28 signs 15
single pathway for adolescents and young adults 345 small round blue-cell tumors 40
socrates 29
soft-tissue sarcomas 185
adult-type soft-tissue sarcomas 195
age-dependence incidence of histologic types 188 biology/pathology 187
clinical signs 190
clinical trial activity defict 186 diagnosis 190
epidemiology 186 etiology 186 histologic types 187
incidence relative to all cancer 187 rhabdomyosarcoma 190 191
rhabdomyosarcoma prognostic factors 192
rhabdomyosarcoma treatment: pediatric vs adult therapy small round blue cell tumors 186195
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