Lung Cancer Information Guide and Personal Record

118 Pages·2007·1.2 MB·English

Lung Cancer
Information guide
and
Personal record
Prepared for you by
The Ottawa Hospital Cancer Centre
Lung Cancer Clinical Pathways Initiative
Made possible by
Ottawa Regional Cancer Foundation
and
The Cancer Care Ontario
Cancer Services Innovation Fund
P587 ENGLISH (REV 06/2008)
Disclaimer & copyright statement
Information published in the Lung Cancer Information Guide and
Personal Record is provided for information and educational purposes
only. It is not designed or intended to constitute medical advice or to
be used for diagnosis. Due to unique individual needs and medical
history, please consult your own personal physician who will be able
to determine the appropriateness of the information for your specific
situation and will assist you in making any decisions regarding
treatment and/or medication.
The Ottawa Hospital and/or its physicians shall not be liable for any
damages, claims, liabilities, costs or obligations arising from the use or
misuse of the material contained in this guide, whether such obligations
arise in contract, negligence, equity or statute law. We do not
guarantee or warrant the quality, accuracy, completeness, timeliness,
appropriateness or suitability of the information provided.
Reference to or mention of specific products, processes or services
do not constitute or imply a recommendation or endorsement by The
Ottawa Hospital. Reference to Internet sites are provided as a reference
to assist you in identifying and locating other Internet resources that
may be of interest. Please remember that Internet resources are no
substitute for the advice of a qualified health care practitioner. We do
not assume responsibility for the accuracy or appropriateness of the
information contained in Internet sites, nor do we endorse viewpoints
expressed.
The information in this guide is provided for personal, non-commercial
use only, provided the information is not modified and all copyright and
other proprietary notices are retained. None of the information may be
otherwise reproduced, republished or re-disseminated in any manner or
form without the prior written permission of an authorized representative
of The Ottawa Hospital Regional Cancer Centre.
This guide was prepared for you by
Lorraine Montoya, RN, BSN, CON(C), The Ottawa Hospital Regional Cancer Centre
Christine Penn, Research Assistant, The Ottawa Hospital Regional Cancer Centre
Valerie Fiset, RN, MScN, CON(C), The Ottawa Hospital Regional Cancer Centre
Eric Simoneau, Secretary, The Ottawa Hospital Regional Cancer Centre
With review by
Deborah Dean – Canadian Cancer Society
Deborah Gravelle – RN, BScN, MHS (candidate), Palliative Care, SCO Health Service
Diane Manii – MSW, RSW, The Ottawa Hospital Regional Cancer Centre
Heather Crowe – Consumer
Judi Panter – RN, BScPHN, Ottawa CCAC
Dr. Karen Burns – MD, FRCP(C), Pathology, The Ottawa Hospital
Lynn Kachuik – RN, BA, MS, CON(C), CHPCH(C), Advanced Practice Nurse,
Palliative Care, The Ottawa Hospital
Liane Murphy – MSW, RSW, The Ottawa Hospital Regional Cancer Centre
Linda Tardif – RN, CON(C), The Ottawa Hospital Regional Cancer Centre
Marguerite Mondor – MA, Spiritual Care, The Ottawa Hospital
Norma Sagan and family – Consumer
Dr. J. Peter Macleod – MDCM, FRCPC, Respirology, The Ottawa Hospital
Dr. Robert MacRae – MDFRCP (C), Radiation Oncology,
The Ottawa Hospital Regional Cancer Centre
Karin Runnalls – RN, BScN, The Ottawa Hospital, Cancer Assessment Centre
Jennifer Smylie – RN, BN, The Ottawa Hospital Regional Cancer Centre
Dr. Sudir Sundaresan – MD, FRCS(C), FACS, Thoracic Surgery, The Ottawa Hospital
Suzanne Joly – RN, The Ottawa Hospital Regional Cancer Centre
Wendy Petrie – RN, MScN, CON(C), CHPCN(C), Palliative Care, The Ottawa Hospital
Garth Nicholas – MD, FRCP(C) Medical Oncologist
Louiselle Godbout – B.Fc.(Pharm)
Acknowledgements
The authors would like to acknowledge the information
contributions from the following sources:
Canadian Cancer Society
Canadian Lung Association
Cancer Care Ontario
K.C. Jones Brain Tumor Binder
Antoine Roussel (Lung Cancer Binder)
Lung Cancer Alliance
Lung Cancer Canada
The Ottawa Hospital Regional Cancer Centre
Tina M. St. John (With Every Breath – Lung Cancer Guide Book)
Women’s Breast Health Centre Personal Information Binder
My personal information
NAME _____________________________________________________________________
Address ____________________________________________________________________
___________________________________________________________________________
Telephone: Home __________________________________________________________
Work ___________________________________________________________
Other __________________________________________________________
Health Card # ______________________________________________________________
Hospital Unique # ___________________________________________________________
Private Insurance Card # ______________________________________________________
The Ottawa Hospital Regional Cancer Centre Chart # _____________________________
Other Information ___________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
Personal contacts
NAME _____________________________________________________________________
Relationship ________________________________________________________________
Address ____________________________________________________________________
___________________________________________________________________________
Telephone _______________________________ or _______________________________
Person going with me to appointments or driving me (if different from above)
NAME _____________________________________________________________________
Telephone _______________________________ or _______________________________
NAME _____________________________________________________________________
Telephone _______________________________ or _______________________________
In case of emergency, please notify (if different from above)
NAME _____________________________________________________________________
Telephone _______________________________ or _______________________________
T A B L E O F C O N T E N T S
SECTION 1
How do I use this information guide and personal record? . . . . 1
What is the Lung Cancer Information Guide and Personal Record? . . . . . . . 3
How to use the information guide? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Who will be part of my lung cancer treatment? . . . . . . . . . . . . . . . . . . . . . 4
Where will I receive care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
SECTION 2
I have been diagnosed with lung cancer . . . . . . . . . . . . . . . . . . . . 7
Frequently asked questions:
What is lung cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
What type is my lung cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
How do I make sense of all of the information? . . . . . . . . . . . . . . . . . . . . 13
What is a common reaction to a diagnosis of lung cancer? . . . . . . . . . . . . 14
How should I share my diagnosis? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
How can I cope with lung cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
SECTION 3
Keeping track . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Who makes up my health care team? . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Business card holder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Summary of my lung cancer diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . 21
My symptom diary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
My medication record . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
My appointments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Questions for my health care provider(s) . . . . . . . . . . . . . . . . . . . . . . . . . 36
My test results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Personal notes and diary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
SECTION 4
How will my lung cancer be treated? . . . . . . . . . . . . . . . . . . . . . . 47
Frequently asked questions:
What is staging? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
How will my lung cancer be staged? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49
How will my lung cancer be treated? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50
What are clinical trials? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52
What is new on the horizon? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
SECTION 5
How do I cope with my lung cancer?. . . . . . . . . . . . . . . . . . . . . . . 57
Frequently asked questions:
How can I cope with the physical symptoms? . . . . . . . . . . . . . . . . . . . . . . 59
What can I do to feel my best during treatment?. . . . . . . . . . . . . . . . . . . . 64
What side effects can I expect from treatment? . . . . . . . . . . . . . . . . . . . . . 64
How do I manage my anxiety? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
Will I be able to keep my regular schedule? . . . . . . . . . . . . . . . . . . . . . . . 65
How do I manage my financial and personal care issues/concerns? . . . . . 66
Should I consider other treatment(s) such as
relaxation techniques, massage, aromatherapy,
acupuncture or other related approaches?. . . . . . . . . . . . . . . . . . . . . . . . 67
SECTION 6
Should I change my lifestyle practices? . . . . . . . . . . . . . . . . . . . . 69
Frequently asked questions:
What can I do to promote a healthy lifestyle? . . . . . . . . . . . . . . . . . . . . . . 71
What is the role of my family physician in my overall general health? . . . . . 72
SECTION 7
What happens when my treatment is over? . . . . . . . . . . . . . . . . 73
Frequently asked questions:
How will I be followed when my treatment is over? . . . . . . . . . . . . . . . . . . 75
How will I feel at the end of my treatment?. . . . . . . . . . . . . . . . . . . . . . . . 75
SECTION 8
What about my family’s needs? . . . . . . . . . . . . . . . . . . . . . . . . . . 77
Frequently asked questions:
How do families normally react when
someone is diagnosed with lung cancer? . . . . . . . . . . . . . . . . . . . . . . . . . 79
Are my family members at higher
risk of developing lung cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80
How can I talk to my children about lung cancer? . . . . . . . . . . . . . . . . . . 80
SECTION 9
What support is available for people
with advanced lung cancer?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83
Frequently asked questions:
What is palliative care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
How do I plan for end of life care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
SECTION 10
Community and other resources . . . . . . . . . . . . . . . . . . . . . . . . . . 87
SECTION 11
Terminology/Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103