Download A Patient`s Guide to Lung Cancer

A Patient’s Guide to Lung Cancer
Contributors and Reviewers
This booklet was written and produced in its entirety by Lung Cancer Canada. It is intended to
meet the information needs of patients and caregivers. It is up-to-date and represents current
practices in Canada. It is not intended to replace medical information or advice offered by your
doctor. Questions or concerns should be addressed with members of your cancer care team.
We would like to thank the following people for their involvement in development of the
Patient Guide:
Lorraine Martelli-Reid
Christine Asik
Dr. Nina Baluja
Dr. Peter Ellis
Dr. David Dawe
Helaine Guther
Susan Hanes
Barbara Jackson
Dr. Raymond Jang
Dr. Michael Johnston
Dr. Natasha Leighl
Hailee Morrison
Christina Sit
Vicki Sorrenti
Dr. Anand Swaminath
Dr. Yee Ung
Dr. Sunil Verma
Dr. Paul Wheatley-Price
Magdalene Winterhoff
Joanne Yu
Medical Illustrations:
Desmond Ballance
University of Toronto
©Lung Cancer Canada, 2006
First printing
Second Edition, 2008
Third Edition, 2011
Fourth Edition, 2012
Fifth Edition, 2013
II
Table of Contents
Introduction............................................................................................ 1
The Lungs................................................................................................. 2
What is lung cancer?......................................................................... 4
Prevalence of lung cancer.............................................................. 6
What causes lung cancer?.............................................................. 6
What are the symptoms of lung cancer?.............................. 8
How is lung cancer diagnosed?.................................................. 9
What are the types of lung cancer?....................................... 11
What are the stages of lung cancer
and what do they mean? ........................................................... 12
What are the treatment options
for lung cancer?................................................................................. 15
Clinical trials ....................................................................................... 27
What are my odds ........................................................................... 29
Talking about your cancer ......................................................... 32
Daily living ........................................................................................... 36
Resources available to lung cancer patients .................. 43
Glossary ................................................................................................. 45
I have lung cancer.
IV
You or someone close to you is struggling with lung cancer. You may have
been feeling unwell for some time and have gone through numerous
investigations before the final diagnosis was made. Alternatively, the
diagnosis may have been made quite unexpectedly following a routine
test or when you were being investigated for an unrelated health
concern. Regardless of how it was made, there is usually shock and anxiety
for all concerned. There is likely a sense of powerlessness in the face of
cancer as well as urgency to have treatment. Friends, family members both
young and old — all will be affected.
We get it — we’ve been there and are still living with lung cancer. It is very
important to remember that it is possible to live with lung cancer. We’ve
been living with lung cancer for 3 years (Anne Marie) and 9 years (Roz).
Lung cancer happens — to those who smoked and those who didn’t, to
the young and the old. The truth is if you have lungs you can get lung
cancer. Yes, smoking is a major cause but it is an addiction that, over time,
can result in a variety of health problems, not just cancer. Regardless of
whether or not you smoked, all patients with lung cancer deserve the best
possible care, treatment, support and understanding.
So, what do you do now?
You probably have many questions. Why did this happen? What will
happen to me? What do I do next? What can I expect? How do I cope?
Reading this booklet is a start. It will provide information on:
• the causes of lung cancer
• the types and stages of the disease
• how it is diagnosed
• treatment options
Remember, too, that lung cancer affects every aspect of your life – your
physical well-being, your relationships with family and friends, your work
and your financial stability. Seek help from professionals for yourself and
your loved ones when you need it. Information in this booklet will help
you understand how to become an active participant in your care.
We and the rest of the Lung Cancer Canada team are also here for you.
Keep fighting and most importantly, take care of yourself.
Roz and Anne Marie
1
The Lungs
Your lungs are essential for good health. The lungs — located in the chest
on either side of the heart — are the means by which we take in oxygen
and get rid of carbon dioxide and other waste gases.
The right lung has three compartments (lobes) and the left lung has two.
Air is inhaled and flows past the voice box (larynx) into the windpipe
(trachea). Just before reaching the lungs, the windpipe divides into
two tubes (bronchi). The left bronchus goes to the left lung and the
right bronchus to the right lung. Within the lung, the bronchi become
progressively smaller (bronchioles) until they reach the air sacs (alveoli).
The job of the alveoli is to add oxygen to the blood and to take waste
gases out. The waste gas (carbon dioxide) is removed from the body as we
breathe out.
The lung is covered by a thin membrane called the pleura. This same
pleural membrane also covers the inside of the chest cavity and the small
space between the two membranes is the pleural space. Normally a small
amount of fluid (pleural fluid) is contained within this space and acts as a
lubricant to allow the lung to slide along the chest wall as we breathe.
In the lungs, cancers can form in the:
• main breathing tubes (bronchi)
• small breathing tubes (bronchioles)
• air sacs (alveoli)
• pleura
! Tips to Take Care of Yourself
Be good to your body. Eat a healthy diet and get enough rest. If you are
feeling unwell, tell your healthcare providers so you can receive help for
your symptoms
2
Pulmonary
Vein
Pulmonary
Artery
Alveolar
Duct
Trachea
(Windpipe)
Alveoli
Lymph
Nodes
Bronchioles
Primary
Bronchi
Secondary
Bronchi
Tertiary
Bronchi
Pleura
Diaphragm
3
What is Lung Cancer?
Cells are the building blocks that make up our tissues and organs. Normally,
before a cell dies, it makes one replacement to take over. Cancer occurs
when something goes wrong with this normal system of growth and
multiple copies are made. These abnormal cells pile up and form a lump of
unusual cells, called a tumour. Tumours can grow their own blood vessels
through a process called angiogenesis and are dangerous because they take
oxygen, nutrients and space from healthy cells.
A malignant tumour (cancer) is a lump that continues to grow and invades
the surrounding tissue. A cancer can also spread through the lymphatic
system to nearby fluid filtering glands called lymph nodes or through
the bloodstream to other organs. This process is called metastasis. When
lung cancer metastasizes, the cancer in the lung is considered the primary
tumour, and the cancer in other parts of the body is called secondary or
metastatic cancers.
The type of cancer is always based on which organ the cancer started in.
Even when lung cancer spreads to another organ, such as the liver or bone,
the diagnosis remains lung cancer.
Similarly, cancers elsewhere in the body may spread to the lungs. These are
not considered lung cancer. Rather, they are lung metastases from the site
where the cancer originated.
4
Normal
Cells
Abnormal
Cells
Abnormal
Cells Multiply
Malignant
or Invasive
Cancer
Boundary
Lymph Vessel
Blood Vessel
Primary Cancer
Local Invasion
Angiogenesis
Tumours grow their
own blood vessels
LymphVessel
Boundary
Metastasis
Cells move away
from primary
tumour and
invade other parts
of the body via
blood vessels and
lymph vessels
Blood
Vessel
5
Prevalence of Lung Cancer
Lung cancer is the leading cause of cancer death in Canada. Currently
one in 12 Canadians will be diagnosed with lung cancer in their lifetime.
While lung cancer prevalence rates are decreasing in men, they continue
to rise in women. The death rate amongst women is also rising. Every
year, more women die of lung cancer than from breast, uterine and
ovarian cancers combined.
It is also important to remember that although lung cancer tends to
occur in older people, you can get lung cancer at any age. People who
are under 60 years of age account for almost 20 per cent of new lung
cancer cases.
What Causes Lung Cancer?
During a lifetime, we’re exposed to many things — including certain
chemicals, radiation and even some infections — that can damage our
cells. This sort of damage may increase the likelihood that cells will
multiply out of control to form a tumour.
Our immune system, which gets rid of abnormal cells, becomes less
efficient as we grow older. Over the years, little bits of wear and tear
that did not cause a problem at first can add up. This is one reason the
odds of getting cancer of any kind increases with age. Some of us may
also inherit cells that are more susceptible to damage.
Anyone can get lung cancer but there are some things that can increase
your chance. These are:
Smoking
The majority (85 per cent) of lung cancer cases are directly related to
cigarette smoking. Smoking increases the likelihood of lung cancer
in different ways. Inhaling smoke destroys the defence system that
keeps harmful substances out of the lungs. In addition, tobacco smoke
contains many toxic chemicals (called carcinogens because they can
cause cancer) that, over time, can promote cell damage. This is why
6
lung cancer risk increases with the
number of years a person smokes
as well as with the amount smoked.
The risk of developing lung cancer is
there even after you quit smoking BUT
quitting smoking stops the risk from
continuing to rise.
In Asian countries, especially among
women, up to 25 per cent of lung
cancers occur in people who have
never smoked.
It is also important to
remember that up to
15%
of lung cancers occur
in people who have
never smoked!
Exposure to second-hand smoke
Exposure to other people’s smoke also increases the risk of lung cancer. It
is estimated that about 3 per cent of lung cancers are caused by secondhand exposure.
Certain chemicals
A history of working with or around certain chemicals may increase the
risk of lung cancer. Chemicals that have been linked with lung cancer
include asbestos, uranium, chromium, nickel, coal tar products, arsenic,
diesel fuel, bis-chloromethyl ether, vinyl chloride and polycyclic aromatic
hydrocarbons. Polycyclic aromatic hydrocarbons are also found in lower
levels in tobacco smoke, wildfires and grilled food. There is little known
about how much exposure to these chemicals is needed to increase the
risk for developing lung cancer.
Exposure to radon gas
Radon is a colourless, odourless radioactive gas that seeps out of the
earth’s crust. It is thought that radon may increase the risk of lung cancer.
Some areas have high levels of naturally occurring radon. If you are
concerned abut radon, there are kits available that allow you to test for
radon levels in your home. More information is available on the Health
Canada website at www.hc-sc.gc.ca/hl-vs/iyh-vsv/environ/radon-eng.php.
! Tips to Take Care of Yourself
If you are currently smoking, stop. Your risk of developing complications
from your treatment, especially when it includes surgery, is much higher if
you continue to smoke.
7
Previous lung disease
Lung damage caused by other conditions such as chronic obstructive
pulmonary disease (COPD), emphysema, bronchitis or scar formation
from previous lung infections can increase the risk of lung cancer.
Previous cancers
Lung cancer is more common in people who have previously been
diagnosed with cancers of the mouth or throat.
Genetics
Cancer may be caused by genetic changes (mutations) leading to the
creation of a cancer cell. There is speculation that people with a family
history of lung cancer may have a genetic predisposition to developing
the disease. The exact role of genes and genetic mutations in the
development of lung cancer is still unclear.
What are the Symptoms of
Lung Cancer?
Many people with lung cancer have no symptoms or only vague
symptoms until the disease has progressed. As a result, a majority of
cases are diagnosed in late stage of the disease.
When lung cancer does cause symptoms, they can include:
• pain in chest, shoulder, upper back or arm
• repeated pneumonia or bronchitis (infection)
• coughing
• fatigue
• shortness of breath
• coughing up blood • hoarseness
• loss of appetite and weight
• wheezing
• blood clots
• swelling in the face or neck
If the cancer has already spread to other parts of the body,
symptoms can include:
• headaches
• weakness
• bone pain and/or fractures
8
• abdominal pain
How is Lung Cancer Diagnosed?
Lung cancer is not easy to diagnose. In its earliest stages, it does not cause
recognizable symptoms, such as coughing, wheezing or unexplained
weight loss. When symptoms do occur, they can sometimes be similar to
symptoms of other respiratory conditions. In a small proportion of cases,
lung cancers are detected when patients undergo x-rays for an unrelated
problem or as part of a routine physical examination.
There are several techniques that can be used to diagnose the disease:
Chest x-ray
A chest x-ray is still the single most useful test for uncovering lung cancer.
It often shows up as an unexplained or new shadow on the images.
CT scan
CT stands for computed tomography. These special computer-assisted
x-rays allow doctors to see exactly where a tumour is located in a lung as
well as its relationship to other organs within the chest. It also helps in
staging the cancer, which means determining if the cancer has spread to
lymph nodes or other organs. An x-ray dye called contrast media may be
injected into your blood. This makes structures inside your body show up
better in pictures.
PET
PET stands for positron emission tomography. During a PET scan, a
radioactive substance called a tracer is combined with a chemical
substance, such as glucose, and injected into the body. The tracer
emits signals that are recorded by a special camera. These signals are
converted into 3D images of the examined organ. The 3D images allow
doctors to see the organ from any angle, which provides a clear view of
any abnormalities.
! Tips to Take Care of Yourself
Let people know. Telling people about your diagnosis will help cut
down on “gossip” and can help you get support from friends and family.
Sharing your cancer diagnosis with others may help you feel that you are
not alone.
9
Bronchoscopy
This technique is used to look into major airways within the lung. A
tiny camera embedded into the end of a fine tube is passed through
the mouth or nose into the lung. Generally this is done with some
sedation and a special spray to numb the throat. If the doctor spots
an abnormal area, a small sample (called a biopsy) can be taken to
determine whether this area represents a cancerous (malignant) or
non-cancerous (benign) condition.
Endobronchial ultrasound (EBUS)
EBUS is a procedure in which the bronchoscope with an ultrasound is
inserted into the airways and sends images to a monitor. Sound waves
bounce off the structures in the area and produce pictures on the
monitor for the doctor to see. Biopsies from lymph glands or small lung
lesions are then done and sent to the lab for testing.
Pulmonary cytology
This test involves taking a sample
Lung cancer is not easy
of the fluid that is made in the
to diagnose. In its earliest
airways of the lungs and looking
stages, it does not cause
at it under the microscope
recognizable symptoms.
to see whether it contains
cancer cells. The fluid can be
obtained by coughing phlegm (sputum) into a special container or, more
commonly, by extracting fluid from a suspected area of the lung during
a bronchoscopy. Many lung cancers, especially those located toward the
edges of the lungs, may not show cancer cells in this fluid.
Needle biopsy
During this test, a CT scanner or ultrasound is used to guide a needle
into the tumour in order to take a tissue sample (biopsy). The tissue
sample is then examined under a microscope by a pathologist to
determine whether the growth is, in fact, cancer.
If these tests do not provide enough information, it may be necessary
to undergo a minor surgical procedure, such as mediastinoscopy or
thoracoscopy. This will allow doctors to take samples of tumour cells
or fluid from around the lung (pleural fluid) or lymph nodes from the
middle area of the chest (mediastinum) to see whether cancer cells have
spread beyond the lung.
10
What are the Types of
Lung Cancer?
The two most common types of lung cancer are non-small cell lung
cancer (NSCLC) and small cell lung cancer (SCLC). The words “small” and
“non-small” refer to the size of the cells found in the tumour and not to
the size of the tumour itself.
Be certain to ask your doctor about the type of cancer you have.
NON-SMALL CELL LUNG CANCER (NSCLC)
Among lung cancers, 75 per cent to 80 per cent are NSCLC. These cancers
are grouped together because they act alike and respond to treatment
in a similar way.
There are three sub-types of NSCLC: adenocarcinoma, squamous
cell carcinoma and large cell carcinoma. The two most common are
adenocarcinoma and squamous cell carcinoma.
Adenocarcinoma: This type of cancer starts in mucous-producing cells,
often in the outer edges of the lungs. This is the most common form of
lung cancer in women and is the type of lung cancer most often diagnosed
in non-smokers. It has also been linked with scarring of the lung.
Squamous cell carcinoma: Squamous cell carcinoma develops in cells that
line the airways (bronchi). It usually develops in more central areas of
the lung and is particularly common in smokers. Men are more likely to
develop squamous cell carcinoma than women.
Large cell carcinoma: This represents about 10 per cent of lung cancers
in North America. Large cell carcinoma can occur anywhere in the lungs
but usually starts towards the edges. It may grow to a very large size
before causing symptoms that lead to a diagnosis.
SMALL CELL LUNG CANCER (SCLC)
SCLC accounts for about 15 per cent to 20 per cent of all lung cancers.
These cancers usually develop in the cells of the large or small airways
! Tips to Take Care of Yourself
Indulge yourself. What are the leisure activities and distractions that you
have found helpful in the past when faced with difficulties? What do you
enjoy doing?
11
(bronchi or bronchioles). It is often referred to as “oat cell” cancer
because of its appearance under the microscope. This type of lung cancer
has a very high association with smoking.
SCLC behaves quite differently from NSCLC. The cancer cells divide
more rapidly. This means the cancer is more aggressive and more likely
to spread before being detected.
OTHER — MESOTHELIOMA
Mesothelioma is a rare cancer. There are only 500 new cases a year in
Canada. It is most commonly linked to asbestos exposure. Although it
grows in the pleura (covering of the lung), it is not considered a form of
lung cancer. However, it is commonly treated by a lung cancer specialist.
What are the Stages of Lung
Cancer and What do they Mean?
Before your cancer care team can decide what kind of treatment will
work best for you, they need to know not only what kind of lung cancer
you have and where it is located, but also the stage it has reached. By
“stage,” doctors mean how big the tumour is, where it is located within
the lung, whether it invades tissue outside of the lungs and whether the
cancer has spread to other sites in your body.
To get this information, your doctors may have to order imaging scans
of other areas of your body. These may include scans of the brain, the
bones and areas in your abdomen, such as the liver and adrenal glands.
All of these areas are common sites for lung cancer metastases. Your
doctors may also have to take biopsies of some lymph nodes near the
tumour. If cancer cells are found at any of these sites, including the
lymph nodes, the cancer is more advanced.
TNM CLASSIFICATION SYSTEM
This is a way for cancer doctors to categorize the extent of your cancer.
The system is based on three factors:
1. the size of the tumour (T)
2. whether or not the lymph nodes are involved (N)
3. whether or not the cancer has spread or metastasized (M) to other organs.
12
Additional letters or numbers may be placed after the “T,” “N” and “M”
to provide more specific details. Each type of cancer has its own TNM
staging classification. In other words, the TNM staging system for breast
cancer, for example, is much different from the system for lung cancer.
Be sure to ask your doctor what stage your lung cancer is. No matter what
stage of lung cancer you have, getting the right treatment can help.
STAGES FOR NON-SMALL CELL LUNG CANCER
Once the TNM description is determined, the cancer is assigned an
overall stage. The stages range from 0 to IV (4). The higher the number,
the more advanced the cancer is. The following descriptions cover the
majority of cases. You will need to discuss your individual situation with
your doctor in order to confirm the stage of your cancer.
Stage 0: This describes a situation where cancer cells have been found
in the lung or bronchus, but they have not yet formed an actual
tumour. This is also called carcinoma in situ.
Stage l: This stage is further divided into:
Stage IA:
The tumour is 3 cm or less and has not spread to
nearby lymph nodes.
Stage IB:
The tumour is greater than 3 cm but no more than
5 cm, and has not spread to nearby lymph nodes.
Stage II: This stage is further divided into:
Stage IIA:
The tumour is between 5 and 7 cm and has not
spread to nearby lymph nodes
OR
the tumour is smaller than 5 cm and has spread to
nearby lymph nodes.
Stage IIB:
The tumour is between 5 and 7 cm and has spread to
nearby lymph nodes
OR
a tumour more than 7 cm that may or may not have
grown into nearby structures and has not spread to
nearby lymph nodes.
13
Stage III: This stage is further divided into:
Stage IIIA:
The tumour has spread to the lymph nodes in the
middle of the chest on the same side that the tumour
is growing on
OR
the tumour is more than 7 cm and may or may not
have grown into nearby structures and has spread to
nearby lymph nodes.
Stage IIIB:
Stage IIIB includes a number of different situations,
including:
The cancer has grown into the trachea (windpipe),
esophagus (swallowing tube), vertebrae (backbone)
or the heart and major blood vessels in the chest
OR
the cancer has spread to lymph nodes near the
collarbone on either side
OR
the cancer has spread into the lymph nodes on the
side opposite to the lung tumour.
Stage IV: The cancer has spread into the space outside of the lung or
moved outside of the chest into other organs such as the brain, bones,
liver or adrenal glands.
STAGES FOR SMALL CELL LUNG CANCER
SCLC is classified into limited stage and extensive stage.
Limited stage refers to SCLC that is confined to one lung and pleural space.
Extensive stage refers to SCLC that has spread to the other lung or to
other areas in the body such as the brain, liver, adrenal glands or bones.
In the past three years there has been a move to stage SCLC using the
same TNM system that is used to stage NSCLC. For practical purposes,
however, until this is fully adopted decisions around treatment still
reference the older system.
! Tips to Take Care of Yourself
Set a schedule. Use a calendar or planner to keep track of appointments
and treatments, as well as commitments. Make a list of priorities – and do
only those things that MUST be done. Keep track of who is helping out
with what chore and when.
14
What are the Treatment
Options for Lung Cancer?
The kind of treatment you are offered will depend on several factors,
including the type of lung cancer you have, where it’s located, how
far it has spread, and your overall health. Many patients receive more
than one type of treatment. For example, with non-small cell lung
cancer (NSCLC), after the tumour has been surgically removed, you
may undergo chemotherapy to kill any cancer cells that may have
gone undetected.
Cancer treatments are categorized as being either local
or systemic.
Local treatments
Local treatments
are directed at a
specific part of
the body, such
as your lung. A
local treatment
is used when the
cancer is limited
to a certain area.
Radiation therapy
and surgery
are both local
treatments.
Systemic treatments
Systemic treatments can affect your entire
body. Chemotherapy (treatment with drugs) is a
systemic treatment. Chemotherapy is generally
given by an injection into a vein. It then circulates
through the bloodstream and is absorbed
throughout the body. Systemic treatments are
often used when the cancer is found in several
parts of the body or to reduce the chance of a
cancer coming back (a recurrence).
Another form of systemic therapy is targeted
therapy. With the recent advancements in lung
cancer treatment, these drugs can specifically
target the cancer cells with a therapy that
hopefully avoids significant side effects by not
injuring the normal cells.
If curing your lung cancer is no longer possible, your treatment may be
aimed at taking away symptoms caused by the cancer and making you
more comfortable. This is referred to as palliative therapy. The goals
of palliative therapy are to improve quality of life by reducing cancer
symptoms and delay cancer growth. Palliative therapy can include
surgery, radiation therapy, chemotherapy and targeted therapies, as well
as pain management and oxygen therapy to help your breathing.
Be sure you understand what the treatment is meant to accomplish and
any side effects that might occur. Notify your treatment team as soon
as possible if you experience any side effects. Side effects can often be
relieved with medication and other measures.
15
NON-SMALL CELL LUNG CANCER (NSCLC)
The treatment of NSCLC depends on the stage of the cancer. In general
terms, if the cancer is diagnosed at an early stage, then surgery to
remove the cancer entirely is usually recommended. Occasionally, if
surgery is not possible for any reason, then radiotherapy may be an
alternative. After surgery, you may have a discussion about a course of
chemotherapy if there is a risk of undetected cells still remaining.
Stage III lung cancer is sometimes treated with surgery, and sometimes
treated with radiotherapy and chemotherapy together. Your doctors will
guide you in this situation.
If your cancer has spread to other parts of the body (Stage IV), then
any treatments will be palliative. They may include radiotherapy or
chemotherapy.
In the past few years, there have been new tests developed to identify
some rare subtypes of NSCLC. The most common types are called ”EGFR
mutations” or ”ALK translocations”. If you have one of these unusual
cancer types, then there are tablet treatments taken by mouth that can
be very effective.
Finally, there are often new treatments being developed and your
doctor may approach you to see if you are interested in participating
in a clinical trial. You should, however, be aware that this is entirely
voluntary and your treatment will not be compromised if you choose
not to enter a clinical trial.
SMALL CELL LUNG CANCER (SCLC)
SCLC tends to be particularly sensitive to chemotherapy and radiation
treatment. Surgery is not usually part of the treatment plan. Treatment
for SCLC depends on whether it is limited stage or extensive stage.
Treatment of limited stage SCLC begins with a combination of
chemotherapy and chest radiation. If x-ray studies of this combination
treatment show a complete response of the lung tumour to the
treatment, your oncologists will recommend radiation to the brain.
Because SCLC commonly spreads to the brain without being detected,
! Tips to Take Care of Yourself
Accept help. When someone offers help, accept it. Your friends and
family members are likely willing to help but may not know what is most
needed at a particular time.
16
radiation treatment to the brain (called prophylactic cranial radiation or
PCI), can significantly reduce the chance of cancer appearing in the brain.
Treatment of extensive stage disease is palliative. The goal is to
improve quality of life and reduce symptoms. It does not offer a cure
but may prolong life. Most people respond well to chemotherapy
and symptoms often improve substantially. Despite this, the disease
usually progresses within months. Oncologists may recommend other
treatments, both chemotherapy and/or radiation, to help control the
cancer growth and symptoms.
MESOTHELIOMA
Mesothelioma is a rare cancer. Unfortunately, in most cases, this
cancer is not curable but your doctor may talk to you about palliative
radiotherapy or chemotherapy. These treatments would be given to try
and improve either your quality or quantity of life. Very occasionally,
and not in all hospitals, major surgery may be an option if the
mesothelioma is diagnosed at a very early stage.
TREATMENT OPTIONS
Surgery to Treat Lung Cancer
Surgery is usually only considered for non-small cell lung cancer
tumours that have not spread beyond the lung. Surgically removing
either part of the lung or one entire lung can often halt the spread of
cancer. Chemotherapy or radiation therapy may be performed before
surgery to treat a tumour that may be beyond the area that can safely
be removed. These treatments may also follow surgery in order to kill
any remaining cancer cells.
Types of surgery used to treat lung cancer include:
• wedge or segmental resection — removal of a small part of the lung
• lobectomy — removal of an entire section or lobe of the lung
• nilobectomy — removal of more than one lobe
• pneumonectomy — removal of an entire lung (remember you have
two lungs)
Video-assisted thoracic surgery (VATS) is an approach to surgery that may
be used to remove a section of a lung through a small incision. VATS may
be used in patients with small tumours, or who have poor lung function
and so are risky candidates for major surgery. There is usually less pain
after the surgery with this approach.
17
Certain operations may also be
performed to confirm a diagnosis
or relieve symptoms such as
shortness of breath from airway
obstruction or fluid pressing on
the lung.
Most major lung cancer surgery
requires a general anesthetic
(putting you to sleep) and
opening the chest cavity. The most
common incision is a cut on the
side of the chest (thoracotomy)
that enters the chest cavity
between the ribs. Specialized
thoracic surgery units have designated doctors (anesthetists) who put
you to sleep and monitor you during the operation. There are also
specially trained nurses, physiotherapists, respiratory therapists and
social workers who will help care for you after the operation. Once
you are ready to leave the hospital, you will be given pain medication,
instructions on how to care for your wound, instructions on any limits to
your activities and a follow-up appointment with your surgeon.
Like any kind of major surgery these operations carry risks. Risk is not just
related to the extent of the operation but also to your overall health.
Smokers are at higher risk than non-smokers. So, if you are presently
smoking, you can lower your risk by quitting immediately. Age alone is
not a major risk factor but the heart, lung and blood vessel diseases that
are common in older people do increase the risks of surgery.
to ask your cancer care team about
? Qsurgery
uestionsinclude:
• Am I a good candidate for surgery?
• Will I be able to return to my normal life after surgery?
• What are the chances that surgery will remove all of
my cancer?
• Should I consider having chemotherapy or radiation
therapy either before or after surgery?
• What can I do to help prepare for surgery?
• What can I do to help my recovery after surgery?
18
Radiation to Treat Lung Cancer
Like surgery, radiation can be used either to try to cure lung cancer or
to improve the quality of a patient’s life. Radiation treatments may be
done to treat cancer that has spread within, but not beyond, the lung, to
improve your chances of recovery by killing cancer cells that remain after
surgery, or to treat cancer that has spread to other parts of the body.
Your oncologist may also recommend radiation if you have other
medical problems that make surgery too risky or if tumours have begun
to grow outside of the lungs. Radiation treatment can also be used to
relieve symptoms such as cough and shortness of breath or bone pain.
The painless treatments generally last only a few minutes, and the
equipment that is used looks much like a regular x-ray machine.
While you may not experience any side effects with a short course
of treatment, radiation therapy sometimes causes symptoms such
as fatigue, nausea, vomiting, diarrhea or skin irritation around the
treatment site. These side effects are usually short-lived and can often
be lessened with medication. A longer course of radiation may cause
additional side effects of difficulty swallowing or problems with
shortness of breath from scarring in the lung afterwards.
Curative radiation treatments are delivered in small daily doses over a
treatment time of five to six weeks. Occasionally, chemotherapy is given
together with radiation to try and enhance its effect. Radiation used for
symptom relief is usually given in a shorter time frame, within five or 10
daily treatments.
Stereotactic radiotherapy is a specialized form of radiation where very
large doses are given in a short treatment time (one to eight treatments).
The goal of the treatment is to effectively control the tumour while
using the same precision as a
surgeon. Unlike surgery, however,
stereotactic radiotherapy does not
require an operation or anesthetic.
The advantage of this treatment is
that a very high dose of radiation
can be used to target the tumour,
while doses surrounding the
tumour fall off very rapidly to
ensure that no excess damage is
done to normal organs.
This form or radiotherapy is
generally used to treat very small
19
lung cancers that are too risky to remove by surgery because of other
medical conditions that can complicate an operation. It can also be
used to treat small tumours that have spread to the brain, lung, liver
and/or spine.
Possible side effects of stereotactic radiotherapy depend on the location
of the tumour but are, in general, similar to conventional radiation
techniques in those areas. Overall, it is very well tolerated since it can be
done in a very short time period.
You should speak to your oncologist about the role stereotactic
radiotherapy may play in the treatment of your cancer and, whenever
possible, consider taking part in clinical trials.
Brachytherapy or endobronchial radiation is sometimes used to treat
tumours that cause problems with blockage of the airways. This can
cause shortness of breath or coughing up blood (hemoptysis).
The advantage of using endobronchial radiation is that the surrounding
normal areas around the airways can be spared from having unnecessary
high doses of radiation since the treatment is primarily aimed at the
tumour in the airway.
This procedure is done under local anesthetic by a thoracic surgeon/
respirologist and radiation oncologist. In endobronchial radiation, a
bronchoscope (a tiny camera mounted on a fine tube) is inserted into
the airways to place a tiny hollow tube (catheter) at the place whether
the tumour is located. Once in the appropriate place, a radiation
source is remotely loaded down the catheter for treatment. An intense
dose of radiation is used for treatment and when done, the catheter is
then removed.
Possible side effects from this procedure include infection, fever, cough,
shortness of breath due to inflammation or swelling of the airways
and, rarely, fatal bleeding from the airway. Usually, patients who need
to have endobronchial radiation have already had external radiation
treatment and cannot have any more external radiation treatment.
! Tips to Take Care of Yourself
Just say ”no.” Lung cancer and its treatments can leave you feeling
fatigued, so conserve the energy you do have. Accept that you will need
to scale back your activities.
20
to ask your cancer care team about radiation
? Qtherapy
uestionsinclude:
• Why are you recommending these radiation treatments?
• What is the goal of this treatment?
• What are the key differences between radiation and
chemotherapy?
• How long will my radiation treatments last?
• Is there anything I should do to prepare for treatment?
• Are there any side effects or complications I should watch
out for after the procedure?
• Are there any medications that help with the side effects
of radiation?
• Will I be able to return to my normal life after radiation?
• Is there anything I can do, such as diet, exercise or stress
management, to help cope during therapy or to help
my recovery?
Chemotherapy to Treat Lung Cancer
Chemotherapy medications may be taken by mouth (pills) or
intravenously. It is usually given in an outpatient clinic, meaning you
come in just for the day. Treatments are scheduled over a period
of several weeks, with a break in between, to allow your normal
cells, especially your blood cells, to recover. During this time you will
have regular blood tests and check-ups to monitor your progress.
Chemotherapy can be given alone or in combination with radiation
treatment and/or surgery.
As chemotherapy attacks cells that are multiplying and growing,
they can also affect some normal cells. This is why chemotherapy may
temporarily cause you to lose your hair. Chemotherapy treatments may
also cause nausea, vomiting, loss of appetite and mouth sores. Most
people find that these side effects pass over time and can often be
prevented or controlled with medication or other approaches that your
cancer care team can advise you about.
One of the most significant side effects of chemotherapy is the lowering
of white blood cells. This may increase your risk of developing an
infection. It is very important that you notify your healthcare team if you
develop a fever.
21
Some chemotherapy drugs can do damage to hearing, nerves and
kidneys. Some may cause permanent side effects such as premature
menopause or infertility. It is important for you to discuss with your
oncologist the type of chemotherapy drug you are taking and if it might
cause these problems.
Chemotherapy may be used at various stages of lung cancer treatment.
Treatment Timing Definition
Neoadjuvant
Chemotherapy
Chemotherapy that is given before surgery to
shrink the cancer
Adjuvant
Chemotherapy
Chemotherapy that is given after surgery to kill
any potential cancer cells that may not have
been removed by surgery.
First-line
Chemotherapy
Chemotherapy that has been determined to have
the best probability of shrinking the cancer. It is
used as the first type of chemotherapy treatment
in patients with Stage IV disease
Maintenance
Chemotherapy
Ongoing use of chemotherapy after firstline treatment to prevent a cancer that is not
growing from starting to grow again.
Second-line
Chemotherapy
Chemotherapy that is given if the cancer has
not responded or has recurred after first line
chemotherapy (or maintenance).
Third-line
Chemotherapy
Chemotherapy that is given if the cancer has
not responded or has recurred after second line
treatment.
22
your cancer care team about
? Qchemotherapy
uestions to askinclude:
• What is the goal of chemotherapy treatment?
• What are my treatment options?
• How long will my chemotherapy treatments last and how
often will I receive treatment?
• What drugs will I receive and how do they work?
• What side effects might occur and what can I do to
prevent or cope with them?
• Are any of the side effects permanent?
• Whom can I contact if I develop any side effects?
• Are there medications to help with side effects?
• When will I be able to return to my normal activities
after chemotherapy?
• Is there anything I can do, such as diet, exercise or
stress management, to help cope during therapy or to
help my recovery?
Targeted Therapies for Lung Cancer
We have made some significant advances in the treatment of NSCLC.
One of them has been the development and use of new drugs,
collectively known as ”targeted therapies”. These drugs have been
mostly studied in patients with advanced (metastatic) lung cancer. Unlike
standard chemotherapy, which damages both cancer and normal cells,
these drugs more specifically target cancer cells and have fewer side
effects. Two of the most common side effects are rash and diarrhea.
As these treatments target specific parts of the cell or specific genes in
the cell, your lung cancer is tested in the laboratory to see whether it is
suitable to be treated with the targeted therapies available.
23
There are different types of targeted therapies that can be
used to treat NSCLC.
The first class of targeted therapies is called epidermal growth factor
receptor tyrosine kinase inhibitors (EGFR-TKIs). These drugs specifically
block the EGFR tyrosine kinase, preventing cell growth and cancer
progression. It may also lead to cancer cell death. In some cases of
adenocarcinoma, the receptor has a mutation. Studies show that these
EGFR TKIs work better in people who have the mutation.
The second class of targeted therapies is called anaplastic lymphoma
kinase (ALK) inhibitors (ALK inhibitors). ALK is part of a family of
proteins called receptor tyrosine kinases. The ALK gene can sometimes
be joined to other genes, causing what is called a “fusion gene”. These
ALK fusion genes have been associated with some forms of lung cancer.
The most common is called the EML4-ALK fusion gene. ALK inhibitors
may slow, shrink or stop the growth of lung cancer by directly acting
against the defective version of the ALK gene.
There is also a third class of targeted therapies called vascular
epidermal growth factor (VEGF) inhibitors. Also known as angiogenesis
inhibitors, this class of targeted therapy is not widely used. For the
cancer cells to grow they need to create their own blood supply. These
drugs block the production of cancer-associated blood vessels and may
slow, shrink or stop the growth of lung cancer. In general these drugs
are combined with chemotherapy. This type of drug is associated with
significant side effects such as high blood pressure, risk of bleeding
and delayed or poor healing of wounds.
We continue to make progress in the treatment of lung cancer with the
development and use of targeted drugs. Results from ongoing clinical
studies are eagerly awaited and will help us move towards a more
personalized approach to treatment where treatment is tailored to your
cancer’s specific makeup. In the meantime, it is important for you to
discuss these treatment options with your doctors, have a sample of your
tumour sent for molecular testing and consider participating in clinical
trials that are investigating new targeted drugs.
! Tips to Take Care of Yourself
Keep records. Keep good records about tests, treatments and
prescriptions. Write down the contact information for members of your
healthcare team.
24
uestions to ask your cancer care team about targeted
? Qtherapy
include:
• Has a sample of my tumour been sent for molecular
testing?
• What is the goal of targeted therapy treatment?
• Am I a candidate for targeted therapy? What are my
treatment options?
• How long will this treatment last and how often will I
receive it?
• What drugs will I receive and how do they work?
• What side effects might occur and what can I do to cope?
• Are any of the side effects permanent?
• Who can I contact if I develop any side effects?
• Are there drugs to help with side effects?
• Is there anything I can do, such as diet, exercise or stress
management, to help cope during therapy or to help
my recovery?
Drugs Used To Treat Lung Cancer — Updated April 2014
Class of Drug
Name of Drug
Chemotherapy
Carboplatin
Cisplatin
Docetaxel (Taxotere®)
Etoposide (VP-16®)
Gemcitibine (Gemzar®)
Paclitaxel (Taxol®)
Pemetrexed (Alimta®)
Vinorelbine (Navelbine®)
EGFR tyrosine kinase
inhibitor
Erlotinib (Tarceva®)
Gefitinib (Iressa®)
Afatinib (Giotrif®)
ALK inhibitor
Crizotinib (Xalkori®)
VEGF inhibitor
Bevacizumab (Avastin®)
25
OTHER TREATMENT OPTIONS
Laser therapy
Laser therapy is sometimes used to re-open airways that have become
blocked by a tumour or to stop bleeding from a tumour in the airway.
The procedure is normally carried out under a general anesthetic.
While you are asleep, the doctor places a bronchoscope which may be
flexible (a small tube containing a tiny camera and a laser) or rigid (a
long smooth metal tube) through your mouth, down into the airway,
removing as much of the tumour tissue as possible. Often, you’ll be
released from hospital later the same day, although you may need to
stay a day or two if you have an infection in the lung. You may need a
repeat bronchoscopy to help clear secretions after the initial treatment.
Laser therapy usually does not cause side effects, but bleeding and
pneumonia can occur. It can be repeated as often as needed.
? Questions to ask your cancer care team include:
• Why are you recommending laser therapy?
• Is there anything I can do to prepare for the procedure?
• Are there any side effects or complications I should look
out for after the procedure?
• Is there anything I can do to help my recovery?
• When will I be able to return to my normal activities?
ALTERNATIVE THERAPIES FOR LUNG CANCER
Many people living with cancer also find it helpful to engage in alternative
therapies to help them better manage and cope with their cancer.
Popular alternative therapies include:
• Acupuncture • Massage
• Meditation • Qigong
• Yoga
If you are thinking about any of these activities, it is important to
ensure that you find qualified practitioners and centres that are able
to take your needs into consideration. It is also very important to tell
your doctor that you are doing some of these activities, especially if
you are taking nutritional or herbal supplements as some of these
may interfere with the medications that your doctor is giving you. This
includes vitamins and antioxidants that can interfere with radiation and
chemotherapy benefit.
26
Clinical Trials
WHY PARTICIPATE IN A CLINICAL TRIAL?
When you are in a clinical trial, you can play a more active role in your
healthcare, gain access to new research treatments before they are
widely available and help others by contributing to medical research.
WHO CAN PARTICIPATE IN A CLINICAL TRIAL?
All clinical trials have guidelines and criteria about who can participate.
These criteria are based on factors such as age, sex, the type and stage
of a disease, previous treatment history and other medical conditions.
It is important to note that these criteria are not used to reject people
personally. Instead, the criteria are used to identify appropriate
participants and keep them safe. The criteria help ensure that
researchers will be able to answer the questions they plan to study.
WHAT SHOULD YOU CONSIDER BEFORE PARTICIPATING
IN A TRIAL?
You should know as much as possible about the clinical trial and feel
comfortable asking the members of the healthcare team questions
about it, the care expected while in a trial and the cost of the trial. The
following questions might be helpful for you to discuss with the clinical
trial team. Some of the answers to these questions are found in the
informed consent document.
27
WHAT SHOULD I DO AFTER I FIND A CLINICAL TRIAL?
Please discuss the trial with your healthcare team as they are best able to
advise you on your treatment plan.
Ongoing clinical trials in lung cancer in Canada are listed on the Lung
Cancer Canada website www.lungcancercanada.ca.
OTHER USEFUL WEBSITES:
ClinicalTrials.gov: www.clinicaltrials.gov
Canadian Cancer Trials: www.canadiancancertrials.ca
? Questions to ask your clinical trial team:
• What is the purpose of the study?
• Who is going to be in the study?
• Why do researchers believe the experimental treatment
being tested may be effective? Has it been tested before?
• What kinds of tests and experimental treatments
are involved?
• How do the possible risks, side effects and benefits in the
study compare with my current treatment?
• How might this trial affect my daily life?
• How long will the trial last?
• Will hospitalization be required?
• Will I be reimbursed for other expenses?
• What type of long-term follow-up care is part of this study?
• How will I know that the experimental treatment is
working? Will results of the trials be provided to me?
• Who will be in charge of my care?
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What are My Odds?
As soon as the diagnosis was made, you may have wondered, “What
are my odds?” This is defined by your prognosis, which is your doctor’s
best estimate of how your cancer will respond to treatment. It is based
on what we currently know about lung cancer and is influenced by a
number of factors:
• the type of lung cancer
• whether or not the lung cancer has spread
• your treatments, and how your cancer responds to them
• other personal or medical factors, such as your age, overall health and
other medical conditions
In discussing your prognosis, your doctor may refer to such statistics
as the five-year survival rate. This rate is derived from studies of large
numbers of cancer patients which measured the number of people who,
five years after diagnosis were:
• disease-free (alive without the disease coming back)
• deceased
A five-year survival rate does not mean that most cancer patients only
have five years to live. Rather, it is the percentage of those patients who
will be alive five years after their cancer was first diagnosed.
The five-year survival rate shows what may happen to most people with
lung cancer. It cannot predict accurately what will happen to you. A
large number of factors will affect what happens to you. As new and
better treatments are developed, survival rates may continue to improve.
WHEN CANCER RECURS
The term “recurrence” means that the cancer has come back after
treatment. Lung cancer may come back:
• where it started or close to where it started (local recurrence)
• in the lymph nodes or tissues near the original site (regional recurrence)
• in organs or tissues in another part of the body (distant recurrence
or metastases)
29
You will be reassessed and
treatment, including surgery,
chemotherapy or radiation
therapy, may be offered
depending on the situation.
Sometimes, it is possible to
develop a new tumour or new
primary cancer that is unrelated
to the original lung cancer.
Treatment for a lung cancer
recurrence usually involves chemotherapy or radiation. Usually surgery
is not an option. In most cases the treatment is palliative.
Sometimes, it is possible to develop a new tumour or new primary cancer
that is unrelated to the original lung cancer.
WHEN CANCER METASTASIZES
This means that the cancer has spread beyond the lungs and into other
parts of the body. Even though it may be located in another organ, the
diagnosis is still lung cancer as the type of cancer is always based on
where the cancer started. Your doctor will still treat your cancer using
the same treatments that are available for lung cancer.
WHEN THE GOALS OF CARE ARE NOT CURE
Palliative care
When the goals of treatment are no longer to cure you of the lung
cancer, treatment opportunities may still be available. Regardless of the
treatment options available, your doctor may refer you to palliative care.
There is a misconception that a referral to palliative care means that
treatment stops. This is not true.
The World Health Organization has defined palliative care as:
• An approach that improves the quality of life of patients and their
families facing the problem associated with life-threatening illness,
through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and
other problems, physical, psychosocial and spiritual
In Canada, patients may receive palliative care at the same time as other
treatments such as chemotherapy or radiation therapy. It is, therefore,
important to realize that a palliative care referral does not mean that
your oncologist is “giving up” on you.
Palliative care is organized in different ways in different hospitals but
may include an inpatient consultation service (where patients admitted
30
to hospital are seen), outpatient consultation service (the patient comes
to a clinic), or home visiting service.
The palliative care team is comprised of different members. This includes
a palliative care physician and a nurse but may include other members
such as social worker or a psychiatrist depending on your needs, and/or
the local resources available.
Some of the important issues that the palliative care team can help you
with include pain and symptom management, psycho-social support and
end-of-life planning.
The focus of the visit will likely depend on several factors such as: how
strong you feel, your understanding of your illness, your pain level or
other symptoms, and your own preferences.
End of life care
At some point during your palliative care visits, discussions around endof-life wishes may take place, including issues of prognosis and ”Do Not
Resuscitate” (DNR) orders or “Allow Natural Death” (AND).
This will be a good opportunity to discuss your wishes, preferences and
fears. For example, many patients have fears about living their last days
in pain or short of breath. An honest discussion may be very helpful in
alleviating these fears.
Best supportive care
Best supportive care usually refers to patient care when the patient is not
receiving any active treatment. If palliative care is an option where you
live, you may want to ask your doctor for a referral to palliative care.
! Tips to Take Care of Yourself
Reach out. Whether you are a patient or a caregiver, talking with others
who are going through a lung cancer diagnosis can help with ideas and
strategies on how to cope. Enlist the experts. Talk to the members of your
cancer care team. Tell them how you are feeling and about your needs
and concerns. Ask questions. They can help with many of them and refer
you to other professionals who can offer additional help.
31
Talking About Your Cancer
TIPS FOR TALKING TO HEALTHCARE PROVIDERS
Being a new patient and getting introduced to the many healthcare
providers who may make up your team can be overwhelming. Feelings
of fear and anxiety may make it hard to remember and understand
what the doctor or nurse says during your appointments. But talking
with your cancer team is very important. The information they give you
will help you make the best decisions possible. Letting your team know
about relevant matters in your life will help them understand the unique
way in which lung cancer affects you.
You will have many questions as you go through the course of this
disease. Asking questions will help you get the information you need
and will give you a feeling of control.
Here are a few tips
Keep a
list
Keep a list of the members of your cancer care team, who
they are and their phone numbers.
If you don’t understand something your care provider tells
you, say so. Try to be specific about what you need, such as
a more detailed explanation or less medical jargon. Check
Speak up to make sure you have understood correctly, for example:
“What I hear is that this kind of cancer usually responds
better to surgery than chemotherapy or radiation. Am I
understanding this correctly?”
Put it on
paper
Jot down the questions you want to ask at your next
appointment and take the list with you. Take notes to help
you remember what the doctor or nurse said. Bring along
a friend or family member who can make notes and also
interpret what you were told.
Some people find it useful to tape record their
conversations with healthcare providers, then replay the
Record it tape later so they are clear about the topics discussed. If
you choose to do this, always inform the provider before
starting to record.
Share
Share with your healthcare team who the important
people are in your life and to whom they may or may not
communicate. Tell them if you want detailed information
on all aspects of your medical situation or if you prefer
general information only.
32
TALKING TO CHILDREN ABOUT CANCER
Consider your children’s age and development stage when talking to
them about your cancer. Don’t be afraid to use the word “cancer” and
clearly describe where your cancer was found. Often it helps to draw
simple pictures to help you show locate where the “cancer lump” has
been located. It is essential to be truthful. Your children will sense
something has been kept from them if they overhear you telling others
more or different information. During this discussion, carefully reassure
your children they did not cause your cancer. Frequently children have
unspoken beliefs that their misbehaviour or a past negative outburst
caused your disease. Children also benefit from your stating clearly that
cancer is not contagious. Again this is another fear that many children
worry about, but may not express or ask you about.
Tell your children about your treatment plan. Chemotherapy can be
described as “special medicine” and radiation treatments “like X-rays”.
It is important for you to distinguish that your cancer treatments are
not the same as your children’s medicine or their dental x-rays, for
example. It is helpful to prepare them for your anticipated side effects.
Telling them about potential fatigue, hair loss, nausea or the number
of appointments you may have or if you need to spend nights in the
hospital will help your children prepare for the expected changes.
Your children may hear things about you, your cancer and your
treatments while they are with family or friends. Encourage your
33
children to come and talk to you if they hear something that differs
from what you have told them and assure then that you will be honest.
Also explain to their caregivers, teachers and your family members what
it is you have told them. This way everyone understands what has been
discussed and can be supportive to you and your children, and watchful
for any changes in their mood and behaviour.
Also talk to your children about who will help take care of them.
Providing them with a simple explanation of the plans that are in place
to help out with the care and routines will go a long way to helping
them feel more secure.
Many cancer centres have social workers who can meet with you to talk
about what to say to your children. They may even be able to set up a
tour of the locations at the centre where you have your appointments
and treatments. Seeing the centre and meeting the staff may relieve
some of your children’s unspoken anxieties or fears about what you are
experiencing during your treatments.
TALKING TO CHILDREN ABOUT CANCER THAT IS NO
LONGER RESPONDING TO TREATMENT
Sometimes cancer continues to grow aggressively in spite of the best
medicine and care available. Children need to be kept up to date on the
changes in your health in order to help them adjust along the way and
prepare for the future.
Regular family discussions about what is happening in each of your lives
helps you stay connected. It is the natural opportunity to keep your children
informed about changes in your health and your treatment. Use gentle,
direct, age- and stage-appropriate language to explain the changes with
phrases such as, “mommy is getting sicker” and as things change “mommy
is getting very sick” and later “mommy is very, very sick and will not get
better”. These phrases convey a message of increased illness and help move
the children along in their understanding of the illness.
Many parents, of all ages, avoid talking about their illness or about
dying, simply out of love and a need to protect their children from harm.
Children, however, do better and are more resilient when parents talk
with them and explain the nature of the disease, and assure them that
they will not be abandoned but continue to be there for them.
When cure is no longer the goal and comfort and quality of life are the
focus for you, there are many things you and your children can do together.
You can prepare a memory book or photo album capturing favourite
34
moments or talk and write about them. You can fill a memory box together
with favourite things that will remind the children of your best times
together. You can jot thoughts on 3x5 cards and place these in the memory
album or box, documenting important messages you want to leave for your
children. These may include thoughts for their future or another stage of
their lives. You may not be able to be there in body, but you can be there in
thought and spirit by leaving these essential guiding sentiments.
You can also record a CD or video, speaking to your children about the
things you wish for them to remember about you or perhaps about your
hopes and dreams for them.
There will be many future occasions when your children will think of
you and, on some very special occasions, miss you desperately: their first
birthday after you are gone, or a special birthday like their 16th or 21st or
that first Christmas. Perhaps it will be their wedding day that makes them
pause and long for your presence. You can anticipate these emotional
landmines by purchasing a greeting card, a gift or having some significant
memento made available to them on that special day. It will ease the hurt
and make a difference in the relationship between you. It will change
from a relationship of presence to a relationship of memory.
It will be worth the effort to do some of these things. It is an investment
in your children’s future and can make an enormous difference in their
well-being and adjustment.
35
Daily Living
MANAGING DAILY ACTIVITIES, ENERGY
CONSERVATION AND WORK EFFICIENCY
Living with lung cancer may mean that you may have shortness of
breath, limited activity tolerance or fatigue. These symptoms may, in
turn, affect your lifestyle and your ability to carry out normal, day-today routines such as looking after yourself – getting washed, getting
dressed, managing basic homemaking tasks, working or enjoying leisure
activities with family and friends.
There are things that you can do to help save energy and manage some
of these systems. These tips can help you achieve that delicate balance
between rest and activity, enabling you to participate in activities that
you enjoy and are meaningful to you. It is essentially a common sense
approach to living. It will help you to maintain control over your life
and activities, rather than the symptoms deciding what you can and
cannot do.
Getting started – understanding your abilities
Examine your
lifestyle
“walk” through a typical day for you and itemize
activities that you find difficult or tend to increase
your symptoms.
For example:
• getting up from a low surface such as a chair,
toilet, bed or sofa
• bending to reach low surfaces
• or getting dressed
• or standing
• or walking for any period of time.
Identify problem
activities
Review and try to find a common theme.
For example:
• Getting up from any surface lower than ___ inches
• Any bending activity or activity that limits your
lung expansion
• Standing or walking for longer than ___ minutes
• Any activity that causes you to hurry
• Specific times during the day when you feel more
tired or when the activities seem more difficult.
36
What might help?
Alter your
environment
• If surfaces are too low, consider using an extra
cushion on a favourite chair or in the car
• Try to use chairs with armrests
• Elevate the chair or sofa with blocks
• Install a handheld shower so you can control the
direction of the water. Some people find the
constant stream of water from a fixed shower head
increases their feeling of breathlessness
• Organize drawers or storage areas so frequently
used items are within easy reach.
Use self-care
equipment
• Elevate a low toilet with a raised toilet seat with
armrests, or install a comfort height, energy efficient
model. A toilet frame or wall mounted safety bar are
other options to consider if the seat height is adequate
• Shower from an adjustable height bath chair or bench,
set at an appropriate height for you. While washing,
sitting is easier and safer for you and your caregiver
• Plan each day to include only what you can
realistically accomplish. Try to recognize your
abilities and limitations. Stop before you become too
tired or short of breath
Plan and
• Alternate heavy tasks, or those requiring more
organize daily
energy, with light tasks
• Consider the best time of the day for you to carry out a
or weekly
task, including social activities and visiting with friends
schedules
• Incorporate rest periods – frequent, shorter rests
during activities are of greater benefit than fewer,
longer rest periods. Learn your tolerance for sitting,
standing or walking
Set priorities
Look at your activities for the day and put them in
order of importance. Only you can make the decision
about what your priorities will be.
Pace yourself
Allow sufficient time to complete a task or activity.
Avoid rushing.
Eliminate
unnecessary
tasks
• Plan ahead, organize supplies or work space to
reduce extra trips
• Minimize stair climbing. Store items on the
same floor on which they will be used most
often. Complete tasks on one floor before going
downstairs/upstairs.
Modify your
routines
gradually
Start easily. Try to do a little more each day. If you are
tired or not feeling well after a change, do a little less
for a day or so.
37
NUTRITION
Many people receiving cancer treatment find their tastes and food
preferences are different compared with what they had been in the
past. You may find you can no longer tolerate foods you used to enjoy.
On the other hand, you may be hungry for foods you rarely ate in the
past. Do not be alarmed by these changes, they are quite common. Eat
whatever you are hungry for now.
Before treatment
Preparing meals ahead can make it easier to get through the rough
spots. Freeze meals, or stock up on ready-made frozen dinners so there
is food on hand when you don’t have the energy to shop and cook.
These meals should be fairly mild in flavour and soft, just in case you are
having side effects from treatment like a sore throat.
During treatment
Take advantage of friends and family
when they offer to help. Make a list
of tasks that would make life easier.
Let the friend who is a good cook
bring you a meal. A pot of soup or
a casserole delivered to your door
when you are tired can mean the
difference between eating and
missing a meal. Let the friend who
doesn’t like being in the kitchen pick
up groceries.
After treatment
Don’t expect your energy level to recover as soon as treatment ends.
Good nutrition plays a key role in healing and regaining strength.
Continue following the advice mentioned above to help you achieve
your nutrition goals. If you are having significant problems at any stage
of treatment, you can ask to see a dietitian at your treatment facility.
Feeling sensitive to food odours?
Try eating foods that are cold or at room temperature. Foods served hot
often have a strong smell. You can also choose foods that do not need
to be cooked, such as cold sandwiches, crackers and cheese, yogurt and
fruit, cold cereal and milk.
Do you have a metallic taste in your mouth?
Try using plastic eating utensils and glass cooking pots. Some people
find that meat tastes metallic after treatment. If you find meat metallic
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tasting, try eating other protein-rich foods like fish, eggs, dairy products,
beans, tofu and soy milk. You can also try masking the metallic taste
of meats by marinating your meat in orange juice, lemon juice, Italian
dressing, vinegar, sweet and sour sauce, wine, soy sauce or teriyaki sauce.
Keep your mouth clean
Keeping your teeth brushed and flossed can help get rid of bad tastes
in your mouth. You can also try rinsing you mouth with baking soda (¼
teaspoon) in water (one cup) before and after eating to help clear your
taste buds.
Eat early in the day
Your appetite is usually greatest at the beginning of the day. Take
advantage of your appetite by making breakfast your largest meal of
the day. Don’t wait till you feel hungry to eat.
Eat small amounts throughout the day
It is often easier to eat several small meals throughout the day rather
than three large meals.
Talk to a dietitian about nutritional supplements (such as Boost® or
Ensure®) if you are not able to eat enough throughout the day.
BONE HEALTH
A healthy diet and regular weight-bearing exercise can help maintain
strong bones. Bones are common area for lung cancer to spread
which is why diet and weight-bearing exercise are very important. If
your lung cancer has spread to your bones, there are many different
effective treatment options that can help.
You should discuss with your doctor whether receiving chemotherapy,
either through an intravenous or a pill, is an option for you. Other
options include radiation therapy, surgery or drug treatment.
Radiation treatment is often given to relieve pain and treat cancer pressing
on the spinal cord. Surgery may be necessary to fix a broken bone (fracture)
or to prevent future fractures in a bone that is weakened from cancer.
There are also drug treatments that specifically target bone metastases.
Two types of drugs have been studied in people with bone metastases
from lung cancer. The first type is bisphosphonates, also widely used
for osteoporosis, and the second is a drug called denosumab. Both
target bone destruction from cancer. Bisphosphonates (for example
zoledronate or pamidronate) are given by injection into a vein
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(intravenous) and denosumab is given by injection under the skin.
While these drugs act in different ways, clinical trials have shown that
both of them reduce the risk and delay the onset of skeletal-related
events, as well as improve pain control and quality of life.
Calcium and vitamin D supplements are also recommended for most
patients with bone metastases, particularly if you are being treated with
a bisphosphonate or denosumab. They are also recommended if you
are taking any medications that are known to weaken the bones, for
example steroids. You should talk to your doctor about whether taking
calcium and vitamin D is a good idea for you.
MANAGING SHORTNESS OF BREATH
When you are short of breath, it is hard to do your regular activities
such as getting dressed, cooking a meal and doing the things that you
enjoy. When you are short of breath, you may tighten up your chest
muscles to breathe, breathe faster, have feelings of fear, anxiety, panic
or general unrest.
As someone living with shortness of breath, you may find that you
are more tired, worried and anxious. You may be upset about your
condition and may wonder if anyone else feels like this. They do! When
you are feeling short of breath, it is important to know that you should
call your healthcare team.
There are also things that you can do every day that can help. Use the
link below to access a book with exercises tips and techniques that will
help you manage shortness of breath.
www.hamiltonhealthsciences.ca/documents/Patient%20Education/
ShortnessBreathJCC-th.pdf
40
? When to call your healthcare team
• When your breathing has become more difficult over a
short period of time
• Along with breathing problems, you feel dizzy, you
notice an increase in your heart rate or your skin is very
pale. One of your blood counts may be low and you may
need a blood test
• You are struggling to breathe and feel very nervous
• You have sudden, new or increasing chest pain
• You have a fever 38°C or higher
• When you wake up you are suddenly short of breath
• You have a new or increasing cough
• Your breathing is noisy
USING OXYGEN
For some patients dealing with shortness of breath, the use of
supplemental oxygen can be quite helpful. Oxygen therapy benefits
patients by increase the supply of oxygen to the lungs and, thereby,
increasing the availability of oxygen to the body’s tissues. Your physician
can and should be the person to determine if oxygen supplementation
can help you.
Lung cancer and the use of oxygen and medications
Many people believe that “being on oxygen” is a sign that they are
desperately sick. This is not always true. For some people, being on
oxygen is an important part of their therapy. For others it may be a
form of short-term treatment.
Oxygen therapy isn’t for everyone. Only people who suffer from
significantly low blood oxygen levels will benefit from oxygen therapy.
In the case of lung cancer, patients with low blood oxygen levels
(hypoxemia) or temporary lung damage from infections (like pneumonia)
will benefit most from oxygen therapy. Ask your doctor to test your
hemoglobin levels to determine if oxygen therapy might help you.
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How does oxygen therapy work?
Oxygen therapy is generally delivered as a gas from an oxygen source
such as a cylinder or concentrator. The oxygen is either administered
through small nasal “prongs” that fit into the nostrils or through a
mask that covers the mouth and nose. Breathing in this extra oxygen
raises low blood oxygen levels, making breathing easier and lessening
strain on your body. Because your body cannot store oxygen, the
therapy works only when you are using it.
Like any other prescription medicine, oxygen must be used very carefully
and only as prescribed. Your doctor will tailor your oxygen prescription
to your needs. When your oxygen is delivered to your home, you and
your family will be given instructions on how it is to be used and how to
clean your equipment.
How long do people use oxygen?
If you have a respiratory infection you may only need oxygen until your
infection clears and your blood oxygen levels return to normal. If you
have chronically low blood oxygen levels because of cancer or COPD, you
may need oxygen permanently.
Funding for oxygen therapy
Oxygen therapy can be expensive, especially when taken over the long
term. Government funding for oxygen therapy is available. Ask your
doctor about funding programs and if you are eligible. Funding varies
from province to province.
Tips for using oxygen
Keep your oxygen equipment clean. Clean equipment works more
effectively. Clean equipment also helps prevent infections. Always wash
your hands before cleaning or handling your oxygen equipment.
Travelling with oxygen. With help and planning you can travel with
oxygen. Contact your oxygen supply company well in advance to allow
them to arrange for oxygen while travelling and at your destination.
Smoking, fire and flammable products. You should never smoke while
using oxygen because of the risk of fire. Warn family members and
visitors not to smoke near you when you are using your oxygen.
Also, remember to stay at least five feet away from candles, lit
fireplaces and gas stoves; and do not use any flammable products
(e.g., aerosol sprays) while using your oxygen.
Flow adjustments. You should never change the flow of oxygen unless
directed by your physician.
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Resources Available to
Lung Cancer Patients
Many types of supports are available for lung cancer patients. Some
follow a face-to-face format, others are in print form and others are
online. These include:
Peer and professional support
• Counselling
• Online networks
• Support groups (including for children) – in person, online, telephone
• Stories of hope
Information
• Disease and treatment for both patients and caregivers
• Clinical trial opportunities
Training
• Relaxation techniques
• Advocacy training
• Empowering patients to navigate their own care, research opportunities
CANADIAN LUNG CANCER RESOURCES
(not including Lung Cancer Canada)
Canadian Cancer Society
www.cancer.ca
• Largest Canadian cancer charity and largest charitable funder
of cancer research
• Support services include:
– Cancer Information Service (telephone)
– CancerConnect – matching with trained peer volunteer
– Educational material
– Statistics
43
Wellspring
www.wellspring.ca
• Focuses on the care of the whole person, with the aim of improving
quality of life. Programs include:
– Peer support
– Coping skills and relaxation techniques
– Yoga
– Tai chi
– Qigong
– Meditation
– Guided imagery
• Expressive programs that focus on expressing feelings through art,
music, writing or quilting
• Support groups
• Education presentations and workshops on:
– Practical advice on day-to-day living
– Challenges of living with cancer
– Post-treatment issues
Gilda’s Club
www.gildasclubsoutheasternontario.org
• Provides support and networking groups, lectures, workshops and
social events, as well as structured programs for children and teens
• Helps members build their own unique and customized community
of support
Canadian Lung Association
www.lung.ca
• Provides information about lung cancer online, patient stories
Cancer Advocacy Coalition of Canada
www.canceradvocacy.ca
• Provides advocacy through annual report card commenting on
Canada’s cancer services
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Glossary
Adenocarcinoma – the most common type of non-small cell lung cancer
Adjuvant therapy – the use of another form of treatment after surgical
removal of the cancer
ALK – Anaplastic Lymphoma Kinase – sits on the surface of the cell and is
involved in cell growth and division. Defective versions of the ALK gene
have been associated with cancer
Angiogenesis – the development of blood vessels
Benign – not malignant or cancerous
Bilobectomy – surgery that removes more than one lobe of the lung
Biopsy – the removal of body tissue to test for cancer
Bronchioalveolar carcinoma – a subtype of adenocarcinoma that can
sometimes grow slowly
Bronchoscopy – examination of the major airways within the lung
Bronchi – the major branches leading from the trachea (wind pipe) to
the lungs, providing the passageway for air movement
Cancer – malignant tumour(s)
Carcinogen – substance that is known to cause cancer
Chemotherapy – a class of drugs used to treat cancer
CT scan – Computed Tomography - a computer-assisted x-ray that shows the
location of tumours. Also called a CAT scan (computed axial tomography)
EGFR – Epidermal Growth Factor Receptor – sits on the surface of the cell
and is part of cell growth and division. Over expression or mutations in
the receptor may lead to cancer
Extensive stage – small cell lung cancer that has spread from one lung to
other areas in the body
Five-year survival rate – a statistic that describes the percentage of
people, all with the same cancer stage, who are alive and free of cancer
five years following its diagnosis
Large cell carcinoma – an uncommon type of non-small cell lung cancer
Lesion – an abnormal change in structure of an organ or part due to
injury or disease
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Limited stage – small cell lung cancer that is confined to one lung and
the area closely around that lung
Lobe – one of the compartments of the lung
Lymph nodes – fluid-filtering glands located throughout the body
Malignant tumour – a cancerous tumour which is capable of invading
surrounding tissue and spreading to other areas of the body
Mediastinum – the middle area of the chest between the lungs that
contains structures such as the trachea, lymph nodes, heart and esophagus
Medical oncologist – a doctor who specializes in treating cancer with
chemotherapy drugs
Mesothelioma – a cancer that develops in the pleura and is usually
related to asbestos exposure. It is not a lung cancer but is treated by
many of the same specialists that treat lung cancer
Metastasis – spread of cancer to other organs through the lymphatic
system and/or bloodstream
Metastatic tumour – refers to those tumours that have spread from the
primary lung cancer (also called secondary tumours)
Molecular testing – occurs in a laboratory where a sample of the tumour
is studied to understand the specific makeup of a tumour (e.g., presence
of specific mutations or genes)
Non-small cell lung cancer – one of the major classes of lung cancer.
It has three major subtypes: adenocarcinoma, squamous cell carcinoma,
and large cell carcinoma
Oncologist – a doctor who specializes in treating cancer. Some
oncologists specialize in chemotherapy (medical oncologists),
radiotherapy (radiation oncologists), or surgery (surgical oncologists)
Palliative care – treatment aimed at the relief of pain and other symptoms
Pathologist – a doctor who diagnoses lung cancer by studying fluid or
tissue under a microscope
PET Scan – Positron Emission Tomography – A scan that uses a tracer to
send signals to a special camera that converts those signals into 3D images
Pleura – a thin membrane that covers the outer surface of the lung and
the inner surface of the chest wall
Pleural space – the area between the two pleural membranes
Primary cancer – the site in the body where the cancer first started
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Prophylactic cranial radiation – radiation treatment given to the brain to
treat microscopic cancer cells that may have spread to the brain, but so far
are undetectable
Radiation – a treatment method that uses high-energy rays to destroy
cancer cells
Radiation oncologist – a doctor who specializes in treating cancer with
radiation
Radiologist – a doctor who reads x-rays, CT scans, and other medical
imaging. Some radiologists also perform diagnostic procedures, such as
needle biopsies, using medical imaging for guidance.
Recurrence – the return of cancer after treatment
Remission – the absence of disease
Respirologist – a doctor who specializes in the treatment of nonmalignant diseases of the lung, and performs bronchoscopies
Second-hand smoke – exposure to tobacco smoke from someone else
smoking
Small cell lung cancer – one of the major classes of lung cancer
Squamous cell carcinoma – a type of non-small cell lung cancer
Staging – a classification used to describe the size and extent of a
primary tumour and whether it shows evidence of metastasis
Targeted therapy – A type of cancer treatment that directly work on
specific parts of the cancer cell (e.g., defective genes or mutations). The
drugs used in targeted therapy do not interfere with the normal healthy
cells in the body
Thoracic surgical oncologist – a surgeon who specializes in diagnosing
and treating lung cancer and other tumours of the chest
Tumour – an abnormal mass or clump of cells that can be non-cancerous
(benign) or cancerous (malignant)
VATS – Video Assisted Thoracic Surgery
VEGF – Vascular Epidermal Growth Factor – a signaling protein in the cell
that participates in the growth and development of blood vessels. Over
expression of this protein may lead to cancer
X-ray – a diagnostic image produced by the use of low-dose radiation
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Notes:
48
Notes:
49
Notes:
50
10 St. Mary Street, Suite 315,
Toronto, Ontario M4Y 1P9
416-785-3439 (Toronto)
1-888-445-4403 (Toll free)
416-785-2905 (Fax)
www.lungcancercanada.ca
[email protected]
Charitable Registration Number: 872775119 RR0001
Lung Cancer Canada is a national charity and the
only one dedicated solely to lung cancer. It relies
on donations to offer programs and services, such
as this booklet, to patients and their families.
Donations are greatly appreciated and a tax receipt
is issued for a donation of $25 or more. Donations
can be made online at www.lungcancercanada.ca,
or by calling the numbers above.