Other books by Lorraine Johnston
An Interview with Author
This interview with Lorraine Johnston, author of Lung Cancer:
Making Sense of Diagnosis, Treatment & Options, looks at
what we know now about lung cancer causes, treatments, and
research. It also examines why such a common and deadly cancer
receives so little funding for research, and how this hurts all
- What do lung cancer patients most need to hear?
Lung cancer is usually diagnosed at late stages--at stage 3 or
4--meaning that the cancer has spread. When people learn that
they have lung cancer, often the first thing they think is, "I'm
going to die." The frightened, dispirited patient needs
reorientation toward the best doctors, the best treatments, and
solid, current information to achieve survivor status and remain
- Why is it unfair--even counterproductive--to assume that "smokers
get lung cancer" and let it go at that?
At least 17,000 people who have never smoked are diagnosed with
lung cancer each year. That's more people than are killed
annually in the US by drunk drivers, or by murderers, or by high
blood pressure. But these lung cancer patients are largely
ignored. These non-smokers-10 percent of those diagnosed with
lung cancer, 20 percent if you include those who quit smoking
years ago-are tarred with the same brush of stigma as if they
Many lung cancer patients report that the most common question
they are asked is, "Did you smoke?" Smoking contributes to the
number of people diagnosed every year with pancreatic, colon,
renal, esophageal, bladder, rectal, and the head and neck
cancers. But no one asks these other cancer patients if they
smoked. The association between smoking and various other cancers
has been known for a long time, yet if you learn that someone you
know has pancreatic cancer or rectal cancer, the first thing you
say probably won't be, "Did you smoke?"
And inversely, only 10% of smokers get cancer. This implies that
there are also familial or environmental factors in play. But
since many smokers die younger from other diseases such as
chronic obstructive pulmonary disease (COPD), stroke, or heart
disease-smoking really is a huge and terrible health hazard-it's
often assumed by the unaware (and by some who should know better)
that if these smokers had not died first of other diseases, they
would eventually have developed lung cancer. So the end result
is that it's not yet clear what the genetic or environmental
contributions to lung cancer might be. And this cheats the
17,000 people diagnosed each year with a lung cancer of unknown
Blaming only the smoker conveniently avoids the complexity of
lung cancer. It shifts all the complexity onto the shoulders of
the vulnerable, weakened patient instead of onto the educated,
skilled researcher who is capable of addressing its complexity
and who would welcome more funding for research. If you can
blame individuals, for example, you don't need to address the
fact that urban areas have a higher incidence of lung cancer,
adjusted for smoking habits. You don't have to confront what
industrial processes may be contributing to this and other
cancers. You don't have to examine the long-term effects of
tuberculosis or rheumatoid arthritis or fungal lung infections on
the later development of lung cancer.
This glossing-over could be remedied with more research, but the
money for more research has been slow coming because the
assumption is that lung cancer will go away if everyone just
stops smoking. But the reality is that even if everyone stopped
smoking today, in 20 years we would still have between 17,000 and
34,000 lung cancer diagnoses-enough to make lung cancer the sixth
most common cancer among about a hundred cancers.
Per person, funding for lung cancer is just a fraction of what is
spent on the "awareness" cancers such as breast cancer and
prostate cancer, even though lung cancer kills more people each
year than many other cancers combined. According to the National
Cancer Institute SEER statistical report "Estimated New Cancer
Cases and Deaths for 2002," 161,400 Americans will die of
respiratory cancers this year-more than the combined total of
40,000 breast cancer deaths, 56,600 colorectal cancer deaths,
30,200 prostate cancer deaths, 13,100 brain cancer deaths, and
21,700 deaths from all of the leukemias. See
The information below is from the National Cancer Institute
Research Funding by Cancer Type
||2000 Spending (in millions)
||2001 Spending (in millions)
||2002 Spending (estimated, in millions)
ALCASE, the Alliance for Lung Cancer Advocacy, Support, and
Education, notes that lung cancer research receives far less
funding per each death than other cancers. In 2001, the National
Cancer Institute estimated it spent only $1,311 per lung cancer
death compared to $11,704 per breast cancer death, $8,190 per
prostate cancer death, and $3,625 per colorectal cancer death.
I also perceive from my involvement with several communities of
cancer patients that lung cancer patients don't get the level of
supportive care that other cancer patients do. Neupogen to boost
white blood cell counts or Procrit to boost red blood cell counts
are not always offered as standard treatments for those
immune-suppressed by lung cancer chemotherapy. In the ACOR Lung
Cancer Internet discussion group, for example, some patients end
up being hospitalized with infections when their white blood cell
counts bottom out, instead of having been treated in a timely
manner with Neupogen to prevent infection. Some patients have to
specifically bring these drugs to their doctor's attention. Among
those in the lymphoma community, on the other hand, getting
supportive-care drugs while going through treatment is routine.
And then there's the ethical imperative: Sick people deserve
help. Many behaviors contribute to illnesses, including
cancer-how much body fat we carry, what we eat, where we live.
We're all prone to illness. And let's not forget that we're all
- Have lung cancer rates been changing as overall smoking rates
decline in the US?
Lung cancer is still the leading cause of cancer death in both
men and women in the US. For women, the number of lung cancer
deaths surpassed breast cancer deaths in the mid-1980's. Lung
cancer deaths among women are still rising, while dropping for
men. The increase in deaths among females is partly attributable
to the previous increase in smoking among females, a habit that
began its rise among women in the twentieth century. And women
who smoke appear to be more susceptible to getting lung cancer
than men who smoke. Estrogen is suspected, but other metabolic
factors unique to females may also play a role.
- Aside from women's susceptibility, what other groups are more at risk for lung cancer?
Rates are higher in urban areas, because of increased air
pollution and increased particulate matter in the air. This can
come from many sources, such as coal burning, traffic, or
There can also be interior sources of particulate matter. Smoke
from wood-burning and coal-burning stoves are known to suppress
the immune response. Vaporized cooking oil is a lung hazard, such
as is generated by cooking in woks as Chinese women do.
Rates vary by socioeconomic class. One reason offered for this
correlation is that smoking rates are higher among those with
lower socioeconomic status. But lower-paid factory and production
workers are also more frequently exposed to inhaled industrial
toxins. And those with little money are more likely to live in
areas with more air pollution, and tend to have lower access to
good health care.
Rates of lung cancer are also high because of certain racial
biocharacteristics. African Americans have a higher rate of lung
cancer diagnosis, are diagnosed in later stages, and survive for
shorter periods of time. This is often attributed to
socioeconomic differences and in differences in care after
diagnosis. However, some studies show that this higher rate might
be partly attributable to a reduced capacity to eliminate certain
classes of carcinogens found in tobacco because of variations in
the glutathione S-transferase M1 (GSTM1) gene.
Family genetics-a family history of lung cancer-increases risk.
Occupational exposures are usually due to chemicals:
Roofers exposed to coal tar fumes
Railroad workers exposed to diesel exhaust
Smelters exposed to arsenic in mined ores
Refining nickel ore, steel manufacture, ceramics, battery manufacture, electric circuitry, and petroleum refining
Waiters, bartenders and others exposed to tobacco smoke
Occupations exposed to asbestos (plumbers, mechanics, seamen, etc.)
Other occupations also include a higher risk for lung cancer
because of their causative link to idiopathic pulmonary fibrosis:
Exposure to metal dust
Stone cutting or polishing
Exposure to vegetable or animal dust
Non-smokers also have an increased risk of lung cancer from
exposure to secondary smoke.
Former smokers can get lung cancer many years after they quit.
Owing to the widespread damage to lung tissue that smoking does,
lung tissue does not recover easily from the insult of smoking.
Fifty percent of lung cancers diagnosed today are in former
smokers, and the person diagnosed with lung cancer is at great
risk for a second primary lung cancer elsewhere in the lung.
Why do other cancers-like breast cancer or prostate cancer-get so much of the attention from the media and the general population?
The attention given to them is justified. The incidence of these
cancers is frighteningly high: one in eight women, over a
lifetime, will be diagnosed with breast cancer. One in five men
will be diagnosed with prostate cancer. There's no question that
time is right to shine a light on these formerly shrouded
cancers. My grandmother had a bleeding skin lesion from breast
cancer before she sought medical treatment. She died a horrible
death in great pain. My uncle discovered and then rapidly died
from a late-diagnosis prostate cancer just a few months after his
retirement, ending many happy retirement plans.
But breast and prostate cancers, being almost exclusively
gender-specific (men can also be diagnosed with breast cancer),
are able to garner support using each gender's most comfortable
communications methods and gender identities. But would "You go,
girl!" work for lung cancer? And what iron men are riding bikes
or playing golf for lung cancer?
And breast and prostate cancer survivors can more easily move to
advocacy because, more and more, these cancers are being
diagnosed very early. Many patients never have the cancer recur.
Most have many, many years of health after a diagnosis to devote
to activism. Lung cancer, on the other hand, is often diagnosed
in late stages. Many patients don't live long enough to become
politicized on behalf of themselves and others.
People want to forget patients with lung cancer. It was the same
way at first with AIDS-until they shouted and screamed and said,
"We're not going away!" AIDS activists blazed the way to get
attention focused on a disease: to get respect, to get funding
for research, to turn away blame and prejudice. They didn't
accept being ignored.
Lung cancer activists are becoming more organized and more vocal.
Many ask, for example, what is being done with their state's
allotment of tobacco settlement money. Will we invest it in lung
cancer research? Or will the very best politicians that money
can buy just squander it?
- Why should we care about lung cancer?
Because it's the number one cancer killer. It's also the second
cancer most likely to follow treatment for certain other
cancers-especially anyone who has had radiation therapy to the
chest. Hodgkin's lymphoma, for example, is a successfully
treated cancer that often affects young adults; thus Hodgkin's
survivors are likely to survive for many years. And if you
survive Hodgkin's for more than fifteen years, the most likely
thing to kill you is lung cancer. See "Adult Hodgkin's Disease"
- What does lung cancer have in common with other cancers?
Many years ago, it was thought that cancer was a single disease
that could pop up anywhere (breast, colon, lung, and so on).
This idea was supported by cancer's tendency to spread to various
Then, for many subsequent years as knowledge accumulated with the
use of tools like the microscope and cell staining techniques,
cancer was divided into types by organ and by cellular
characteristics. Researchers noted that different treatments
seemed to work for different types.
Now, molecular biology and immunogenetics are helping us see the
similarities among cancers. Even though different cancers appear
to behave differently, they do share things in common on the
molecular and genetic level and during the developmental process.
For example, some lung cancers express the Her-2 cell surface
antigen that some breast cancers express. There are other
similarities among cancers, such as certain immune system
components or growth factors that ramp up or down as a cancer
progresses, and damage to the universal genes that control cell
death in all cells.
The goal is not to arm-wrestle the different cancer advocacy
groups for the research money, but to get the job done. There is
a core of tools to help defeat all cancers. If we find new
treatment techniques that benefit lung cancer patients, it is
likely to benefit all cancer patients. If we find drugs for AIDS
that reinvigorate the immune system, all cancer patients may
benefit. If carefully monitored research with stem cells is
allowed to proceed, all diseases, cancer and otherwise, are
likely to benefit.
But lung cancer patients are also disadvantaged because the lung
is both a mandatory organ and a finite physical resource. It is
not regenerative like the liver and bone marrow. All lung tissue
cannot be totally removed from a living patient as the large
intestine can-you can't live without it, as you can live without
your large intestine, spleen, prostate, or pancreas, or an arm or
leg. So transplant technology and stem cell research in
particular will benefit lung cancer patients. Wouldn't it be
wonderful to be able to regrow an entire lung from a small
section of healthy lung tissue?
- If so many people die of lung cancer because it is found in late stages, how can we find it earlier?
Today, lung cancer is found in one of three ways: by luck, by
diagnosis after symptoms develop-often too late to save the
life-or by healthy paranoia and perseverance on the part of
someone who suspects he or she has lung cancer.
There are no screening guidelines in place for lung cancer in the
US. There are no affordable, readily available tools available
to diagnose lung cancer early enough to cure it. And we
desperately need these tools. About 85% of lung cancer cases are
diagnosed in later stages of the disease. Currently the five-year
survival rate for all lung cancers combined is stuck at a dismal
13 percent. Yet research shows that, if detected early, lung
cancer 5-year survival rates could reach 80%.
The best candidate tool for screening to date is spiral CT. If
there were mass screening, we would catch many earlier lung
cancers. However, many health authorities think spiral CT is not
worth the several hundred dollars per person we would have to
spend. Several clinical trials are examining the effectiveness
of this screening, but there is no move to do mass screening yet
for lung cancer, such as now exists for using colonoscopy to
screen for colorectal cancer. In other words, if you visit your
family doctor for a routine issue, he or she may urge you to have
a colonoscopy if you are over age 50-even if you have no gastric
symptoms or complaints. But a spiral CT every two years to
screen you for lung cancer will not be suggested, not even if the
doctor knows you're a smoker. Not even an annual chest x-ray
will be suggested.
Apart from the cost, CT can't identify very small lung lesions as
cancers. Smaller lesions either aren't seen at all, or aren't
seen clearly as a cancer. Other tests for lung cancer can be
sensitive to very small lesions but are not precise, meaning that
there are a lot of false positives, leading to more expensive,
nerve-wracking, and potentially harmful diagnostic procedures.
Expensive positron emission tomography (PET), for example, can
catch some very small, "hot" lung lesions, but it also results in
many false positives.
For both patient and doctor, these nebulous lesions are an
enormous problem, because one must decide what to do about a
lesion that might or might not be a cancer. Have an expensive,
painful, and risky surgery only to learn that there is no
cancer, just a benign lesion? Or wait, hoping it is nothing,
only to have the lesion grow quickly to three centimeters or
more, at which point there is a greatly increased risk of
incurable disease? There is a dire need for better, cheaper
- Are there subtypes of lung cancer? Are some "better" to get than others?
Yes. The general classifications:
Small cell, which is among the most aggressive of all
cancers. More people with small-cell lung cancer report a history
Non-small cell. Many are smokers, but fewer than are
found with small cell. One subtype of non-small cell lung cancer,
squamous cell, is also linked strongly to smoking, but is more
slow-growing and more often cured with surgery. Another subtype
of non-small cell lung cancer, bronchioloalveolar carcinoma
(BAC), is more likely to be seen in young females who have not
smoked. BAC is a puzzling lung cancer sometimes found in those
with a history of systemic sclerosis, atypical lung infections
such as histoplasmosis or tuberculosis, congenital lung cysts, or
certain autoimmune disorders such as rheumatoid arthritis.
- What are the bright spots in lung cancer research? Are there any promising clinical trials?
There is indeed much to look forward to in future therapies. The
treatments that are closest to fruition are those now in phase
III clinical trials. Cancer treatment makes it to phase III
testing only after succeeding in phases I and II, which address
toxicity and effectiveness. Phase III trials compare the new
therapy to standard therapy to see if the new therapy is truly
There are phase III trials of various recombinations of drugs
already FDA-approved for lung cancer, such as cisplatin,
carboplatin, docetaxel, paclitaxel, vinorelbine, etoposide,
irinotecan, topotecan, doxorubicin, ifosfamide, vincristine,
cyclophosphamide, or gemcitabine.
In addition to those phase III trials, the following novel
substances are in phase III trials:
For non-small cell lung cancer:
Iressa, an epidermal growth factor receptor (EGFR) inhibitor.
Epidermal growth factor receptor inhibitors interfere with one of
a key class of enzymes known as tyrosine kinases to limit the
tumor cell's ability to grow. Although the lay press interpreted
the results of one phase III Iressa clinical trial as
"disappointing," the whole story is more complex. While it is
true that not all people taking Iressa are cleared of disease,
many people on Iressa get an enduring stability in that their
tumor's size remains stable for a long time. Others have
stability for a while, and then the tumor begins to grow again.
Clearly Iressa shouldn't be written off. On an otherwise grim
prognostic horizon, it's a good tool in the arsenal, even if
stability instead of a complete response is the more common
result. Moreover, it is important to keep in perspective that
Iressa is being examined now largely as a single agent, yet
almost no chemotherapies are given today as single agents. Drugs
are given in combination, to work together against the cancer.
When Iressa is approved by the FDA (an FDA advisory committee has
already recommended that it be approved), I expect to see a
greater number of clinical trials testing Iressa in combination
with other drugs. Iressa has already shown promise when used in
conjunction with radiotherapy.
There are other growth factor inhibitors similar to Iressa, such
as Tarceva (previously called OSI-774).
Oblimerson, an antisense drug. Antisense drugs combine with DNA
or RNA to inhibit tumor cells from copying their DNA as part of
growth. Oblimersen combines with the RNA for a deranged protein
called BCL-2 that blocks the normal cell death known as
apoptosis. (Tumors are adroit at avoiding normal cell death.) In
theory, this coupling should permit cancer cells to die normally.
Bevacizumab, a monoclonal antibody. Monoclonal antibodies fasten
to proteins on the surface of tumor cells and interfere with the
cell in a variety of ways. Bevacizumab targets vascular
endothelial growth factor receptors, and in theory should stop
the growth of blood vessels that feed the tumor. A blood
vessel's normal growth is known as angiogenesis, so this blocking
action is known as antiangiogenesis.
Other antiangiogenesis drugs being tested in phase III trials for
lung cancer are Thalidomide, Neovastat, a multifactorial
angiogenesis inhibitor found in cartilage, and
Exisulind, a metabolite of the COX-2 inhibitor Sulindac, is being
tested to induce the orderly cell death known as apoptosis.
Well-known COX-2 inhibitors used for arthritis pain such as Vioxx
and Celebrex are also being studied for their anticancer
BMS-275291, a matrix metalloproteinase (MMP) inhibitor. MMP
inhibitors limit a tumor cell's ability to move to new tissue and
anchor there. Since the hallmark of cancer is invasiveness, if
a cancel cell cannot spread, it cannot invade other tissue.
Bexarotene, a retinoid X receptor (RXR). RXRs interfere with the
genes associated with a tumor cell's growth and differentiation.
RXRs also promote the presence of receptors for Interleukin-2, a
critical part of our immune system's response to tumors.
Tirapazamine, a topoisomerase II inhibitor. Topo-II inhibitors
interfere with a cancer cell's ability to untwist in order to
copy itself, and to repair its DNA. Unlike other Topo-II
inhibitors, however, Tirapazamine can work in conditions of very
low oxygen, which is a characteristic of solid tumors.
For small cell lung cancer:
BEC2, a monoclonal antibody that attaches to GD3. Melanoma
patients with high antibody levels against GD3 do better, and
preliminary findings are that the same is true for those with
Bacillus Calmette-Guerin (BCG), a vaccine adjuvant. Used for
years in Europe as a vaccine against tuberculosis, BCG has
immune-stimulating properties that have proven useful in other
cancers such as melanoma and bladder cancer.
Stem cell rescue. Small cell lung cancer responds well to
chemotherapy. Unfortunately, the cancer almost always returns,
implying that not all of the cancer cells were killed by chemo.
Stem cell rescue is a technique that permits very high doses of
chemo to be given-high enough to destroy all cancer cells, but
unfortunately bone marrow, too. So, before chemo is started, a
portion of the patient's marrow is saved by tapping a vein for
stem cells. After chemo, the patient's stem cells are reinfused
into a vein, from which they migrate back to the bone and regrow.
This procedure differs from a stem cell transplant of donor stem
cells. The purpose of stem cell rescue is only to permit very
high doses of chemo, not to recruit a donor's immune response
against the tumor-although that too will almost certainly be
tried against lung cancer in the future, perhaps in conjunction
with lung transplantation.
Other good news:
SAHA (suberoylanilide hydroxamic acid), is a promising new drug
that has just begun phase I trials. In cancer cells there exists
a P-glycoprotein pump (PGP) which removes chemicals from the
cell. Many cancer cells switch on PGP after they have been
exposed to chemo, causing a distressing setback in tumor kill
known as multiple drug resistance (MDR) because the tumor is able
to pump out not only the anticancer drug already given, but also
others in its chemical class. MDR is the reason why most chemo
drugs that once worked in a given patient will at some point stop
working. SAHA is theorized to bypass the cancer cell's PGP and
kill the cancer cell. If it works, this will be very good news
Cross-cancer technologies. There are technologies developed for
other cancers that are now beginning to be used for lung cancer.
For example, technologies developed for treating cancer in the
liver, such as radiofrequency ablation (RFA), are now beginning
to be used in lung cancer. RFA involves strategically placed
needles that "cook" the carefully targeted cancer cells using
high, heat-generating radiofrequencies. In theory, RFA could be
used in many organs other than the liver.
- Is it true that lung cancer patients are more depressed than other cancer patients are? Why?
Some oncology nurses report that lung cancer patients are more
depressed-less likely to seek services and support, less likely
to have hope for cure or other goals. It is thought that this
depression-common among all cancer patients-occurs in particular
among lung cancer patients because lung cancer patients are more
isolated and stigmatized than other cancer patients are, and
because they are diagnosed most often at stages III or IV.
- Who speaks for lung cancer patients and families?
ALCASE, the Alliance for Lung Cancer Advocacy, Support and
Education, is the only national voice for lung cancer patients.
In addition to patient advocacy, support and education, ALCASE
does a good job helping patients who want to make a difference,
for example, by preparing literature for contacting legislators.
Their grassroots organization is very sound. They know which
representatives are sympathetic to lung cancer issues, and each
state's position on tobacco settlements. ALCASE also offers a
Lung Cancer Manual that can be downloaded for free one chapter at
The American Lung Association doesn't do much about lung cancer.
(On their list of Lung Disease press releases, going back to
1996, there is not one article on lung cancer.) They talk about
asthma, TB, sleep apnea, and so on. They do talk about underlying
issues of tobacco and clean air. The diagnosed lung cancer
patient, though, is not part of ALA's public face.
Likewise, the American Cancer Society doesn't offer much that's
specific for lung cancer patients. What focus they have for lung
cancer is on prevention, not treatment. But ACS attempts to do a
great deal for a great many cancers, such as operating the Hope
Lodges, so this lack, albeit unfortunate, is not surprising. A
great many patients with cancers of all types express the concern
that ACS does not do much for their particular cancer.
why ALCASE is so welcome and so important.
- How can families offer support for each other?
We know from David Spiegel's work with breast cancer survivors
that those who join support groups live longer. If, as a lung
cancer patient, you are afraid to look for support because you
are afraid people will blame you for your disease, you are
potentially very isolated indeed. There are very few in-person
support groups just for lung cancer patients. Most in-person
support groups are for all cancers. Thus, lung cancer patients
tend not to go to these more general groups where they might be
blamed, and so they don't get much-needed support.
Lung cancer families can find each other through
ALCASE, and also at
ACOR, http://www.acor.org, the Association of
Cancer Online Resources, with five lung cancer support groups.
ACOR is a nonprofit organization committed to providing credible
information, comprehensive support, and privacy to cancer
patients through cancer-related Internet mailing lists and
Web-based resources. Within ACOR, there is no lung cancer stigma.
Groups are divided by types of lung cancer and by specific needs.
Patients who are diagnosed at the latest stages of lung cancer,
for instance, often need to make plans about dying. The ACOR
structure of groups makes sure that people diagnosed at later
stages get end-of-life support. Patients with this need are not
told they are depressing, nor that they should not talk about
end-of-life plans and experiences, nor that they should go
elsewhere for support. (In mixed-cancer support groups at local
hospitals, others in the group sometimes don't want patients in
late stages or a recurrence of disease to be a part of the group
ACOR helps patients find the treatments they need and perhaps
even helps them save their life. They encourage looking at
clinical trials and not being intimidated about asking questions.
They encourage patients to take little steps until it all makes
The thrust of what I have to say to patients is: hope. Get
started with good organizations that are there to help you:
ALCASE and ACOR. Read and educate yourself. Find the best
treatment team, get the best treatment possible, and save your
About the Author, Lorraine Johnston
Lorraine has written three well-respected books on cancer:
Lorraine is a patient advocate and has a background in
life sciences. Through researching and advocating for family members
who had cancer she became involved with the cancer patient community.
In addition to being involved in numerous cancer support groups, she
works on patient advocacy projects including fundraising and cohosting
internet discussion groups for patients and survivors.
Patient Centers Home |
O'Reilly Home |
Write for Us
How to Order |
Contact Customer Service
© 1999, O'Reilly & Associates, Inc.