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Lung Cancer

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Lung Cancer:
An Interview with Author
Lorraine Johnston

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 cancer research.

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 survivors.

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 smoked.

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 origin.

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 (at

Research Funding by Cancer Type
Cancer Site 2000 Spending (in millions) 2001 Spending (in millions) 2002 Spending (estimated, in millions)
Breast 438.7 475.2 535.8
Colorectal 175.8 207.4 238.6
Lung 175.0 206.5 237.9
Prostate 203.2 258.0 291.0

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 mortal.

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 industry.

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
  • Plastic producers
  • Refining nickel ore, steel manufacture, ceramics, battery manufacture, electric circuitry, and petroleum refining
  • Painters
  • 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:

  • Farming
  • Livestock handling
  • Hairdressing
  • Exposure to metal dust
  • Raising birds
  • 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" at

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 multiple organs.

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 testing tools.

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 of smoking.

  • 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 better.

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 Carboxyamidotriazole.

  • 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 properties.

  • 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 SCLC.

  • 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 indeed.

  • 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. See

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 a time.

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.

That's 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,, 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 any more.)

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 sense.

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 life.

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.

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