At times it is impossible to think of anything except the possibility that cancer will return. This fear might be fleeting, or it can be trenchant, obsessive, and compelling, occupying both waking and sleeping thought.
Depending on the stage at which your lung cancer was diagnosed, the type of lung cancer you had, and what you've learned about it, you might be somewhat prepared intellectually and emotionally for recurrence, perhaps with a new treatment plan already selected. On the other hand, you might be emotionally broadsided by the news, even if you are prepared intellectually.
This chapter begins with a definition of recurrence of disease and then describes who is likely to experience a recurrence, how recurrence is detected, in what areas of the body it might emerge, when its most likely, and why it occurs. A discussion follows regarding the difficult emotional issues that arise at this time, which often are different from those one encounters at first diagnosis.
There are instances of test results mistakenly being interpreted as recurrence of disease-and we discuss what findings may constitute equivocal results-but chiefly, this chapter focuses on true recurrence.
It's possible to mistake some aftereffects of treatment for symptoms of recurrence. It might relieve you of some anxiety if you review Chapter 13, Adverse Effects of Treatment, which describes most of these physical changes.
The definition of recurrence
As defined by Roberta Altman and Michael Sarg in The Cancer Dictionary (Checkmark Books, 1999), relapse or recurrence is the return of disease in a patient who, by the best measures available, appeared to be disease-free for longer than 30 days after treatment ended. One who has quantifiable evidence of tumors remaining after treatment is said to have had only a partial response to treatment and is very likely to experience a progression of disease. The patient who, after successful treatment, experiences a return of disease within 30 days is said to experience a progression of disease rather than recurrence.
Some lung cancer survivors have tumors that shrink less than 50 percent and then remain the same size for some period of time, a condition called stable disease. Others might have tumors that shrink greatly, but never entirely disappear. This residue might be noncancerous scar tissue.
A very late recurrence might be a new lung tumor, known as a second primary cancer. These tumors should be biopsied to classify them correctly as NSCLC, SCLC, or a mixed type, because shifts between lung cancer types are possible.
True absence of disease after treatment of any kind is very hard to determine with complete certainty. The surgeons eyes and the specific imaging tools and blood tests used today to detect remaining or recurring disease unfortunately are not foolproof.
How recurrence is detected
Some lung cancer survivors experience old, familiar feelings of malaise in the chest or airways or notice other alarming symptoms, such as blood in sputum, that trigger a visit to their oncologist. Other survivors note entirely new symptoms that they might not think of as related to lung cancer, but somehow they know that things just aren't right. Still others might be feeling fine, yet a routine imaging study indicates a possible return of disease.
If you have worrisome symptoms, contact your doctor immediately. Do not allow concerns about being thought a hypochondriac interfere with getting timely medical care that might save your life.
It's likely that your oncologist will order one or more tests if either you or he notices anything that hints at a return of disease. Many of these tests, such as imaging scans or blood testing, will be familiar from your experiences during your initial diagnosis and follow-up care. Kathy describes Marty's follow-up:
Well, we made it to the last chemotherapy treatment on December 27, 1999 (my uncle had died the week before of prostate cancer). The doctor told us he thought it would be a long time before Marty would have to go back on chemo. We were so excited, a little scared but I was looking forward to trying to be normal for a while-little did I know that we were creating a new normal for ourselves.
Shortly after Marty's January appointment with the oncologist, he started having a pain in the middle of the chest. This was about the same time he went off the MS Contin and got the diarrhea. The doctors all said it couldn't be the cancer; it was too soon. He continued to work with our general practitioner; but constantly complained of a pain in the middle of his chest.
The day before I was to return to work after my hysterectomy, Marty had his three-month CT scan done and he had two exploratory procedures--one for the esophagus and one for the colon. Then we got a call from the oncologist; they wanted to see Marty right away. I knew it was bad news. There were tumors in the lymph nodes.
In April, he started back on chemo: Gemzar and carboplatin. We were devastated.
If suspicious lesions reappear in the lungs or in well-studied sites of lung cancer metastasis, such as bone or brain, treatment might proceed without biopsy If new lesions appear in unusual places or recurrence occurs years later, however, your doctor might wish to confirm the re-emergence of disease with a second biopsy before proceeding with treatment.
Often these decisions about biopsy depend on the type of lung cancer first found and the stage of the original disease. A person originally diagnosed with extensive stage small cell lung cancer, for instance, is considered likely to experience involvement of many organ systems eventually; whereas a person diagnosed with stage I non-small cell lung cancer has a lower chance of recurrence. Thus, liver lesions appearing on an imaging scan for a stage N survivor might be interpreted as very likely representing a further spread of disease, whereas a stage I survivor might be questioned, as possible benign scarring, fatty lesions, or a new primary tumor, needing further testing.
Why disease recurs
The most widely accepted theory for recurrence is that not all lung cancer cells were removed or killed by the original treatment.
Recent research has shown that cancer cells can acquire resistance to chemotherapy drugs by turning on genes that block the cellular intake of certain drugs and others related to them, a phenomenon called multiple drug resistance (MDR). This appears to be the case with small cell lung cancer, whereas non-small cell lung cancer might be somewhat resistant to chemotherapy from the very beginning rather than acquiring resistance as treatment proceeds.
Other theories hold that genetic predisposition, widely damaged lung tissue, or continued or repeated exposure to environmental toxins might be responsible for the return of disease, but it can be argued that these latter instances are independent (metachronous) cancers and not recurrence, progression, or spread of the first cancer.
Who experiences recurrence
Very broadly, and only in the context of today's treatments, one can say that those diagnosed in advanced stages of illness or with aggressive tumors are more likely to experience a recurrence than those diagnosed in early stages or with tumors of low malignant potential.
With many new treatments being developed for lung cancer, however, it's not wise, correct, or ethical to adhere to generalities without continually revisiting the progress of research and without noting exceptions. Solitary tumors in the brain or adrenals, for example, might be addressed successfully with radiosurgery or traditional surgery. Chapter 6, Prognosis, discusses these exceptions in detail.
Where disease recurs
The return of disease can be classified as local, regional, or distant, and can vary based on the type oflung cancer first found and the type of first-line treatment used.
Locoregional recurrence
Recurrence at or very near the site of the first tumor, known as locoregional recurrence, is common for both NSCLC and SCLC. Recurrence in the same (ipsilateral) lung is possible if any lung tissue remains on that side. Recurrence in the opposite (contralateral) lung is possible, but less likely than same-side recurrence or recurrence in distant organs. Recurrence is possible outside the lung, but within nearby neck or chest structures: mid-chest lymph nodes, the heart or its blood vessels, ribs, chest fluid, larynx, and other chest or neck structures can be invaded by recurrent disease.
Distant recurrence
In Chapter 26 of the first edition of Lung Cancer: Principles and Practice (Lippincott, 2000), David Midthun and James Jett say, 'There is hardly a body tissue that is immune from the metastatic presence or effects of bronchogenic carcinoma." Distant recurrence of lung cancer is most common in the brain, with 30 to 50 percent being solitary tumors. Adrenal glands, liver, or bone (most often in the spine, ribs, pelvis, or legs) are also common sites of recurrence, although this varies based on the kind of lung cancer one has. Small cell lung cancer is more often diagnosed at late stages with multiple organ involvement than is non-small cell lung cancer, and it reappears more often in distant organs or in rare sites than does non-small cell lung cancer.
Geri Capasso tells of her aunts unexpected recurrence of disease:
In 1988 my aunt, whom I loved very much, had part of her lung removed and had radiation treatments as a follow-up. The doctor said she was cured, but she routinely had chest CT scans. Right before her fifth year, cancer-free anniversary, she started to get terrible headaches. The lung cancer metastasized. It was not caught soon enough, but she fought with radiation and chemo. She lost the battle within six months.
That is when I learned that lung cancer cells commonly hide in the brain. I still cannot understand why they weren't checking her brain. She was 66 years old and ironically had given up cigarettes about one or two years before diagnosis. I remember that she also had clubbed fingers.
I think it's important to stay on top of things, and, if need be, to catch it early and not wait for symptoms.
Gray areas and delays
In the last ten or fifteen years, we have benefited from the tremendous progress made in medical science's ability to detect cancers at much earlier stages. Nevertheless, current sophisticated imaging tools still provide just a glimpse into the body's complex workings. Consequently, blood tests and imaging studies sometimes yield equivocal results that must be qualified with additional testing or a second biopsy
Following some types of chemotherapy, for example, fatty or scarring lesions can form in the liver. Following lung surgery, scarring (sclerosis) might occur. These benign lesions might appear upon CT scanning as metastases. Positron emission tomography (PET) or MRI can, in some cases, distinguish benign lesions from recurrent lung cancer.
Blood tests that are sometimes used to track possible re-emergence of cancers are not always reliable indicators of recurrence in the absence of other findings. eEA (carcinoembryonic antigen), for instance, can become elevated as a result of other bodily or disease processes or as a result of changes in smoking or alcohol consumption habits. Different laboratories sometimes use different manufacturers' assays to measure blood levels of various substances, and their results can't always be compared with accuracy.
When does risk abate?
In general, the longer you remain disease-free, the less likely you are to experience a recurrence of disease. You might be considered by insurance companies and your oncologist, for example, to be cured of the primary tumor once you have been in remission for five years. Those with bronchial carcinoid tumors, however, might experience a very long disease-free period followed by recurrence.
It is known that those who have had lung cancer face a very high risk for a second lung cancer. Unlike colon or breast cancers, lung tissue cannot be removed in its entirety to ensure that disease will not return. Some researchers believe that the same environmental or genetic aberrations that triggered the first tumor remain to cause a second tumor; that is, a tumor whose development is distinct from a recurrence or metastasis of the first tumor. This means that, for some people, the quest for cure of the original tumor might be only half the battle.
If the survivor has a family history of lung cancers, especially among never-smokers, he should never relax the vigilance of follow-up testing to detect second cancers or recurrence. These genetic disorders might predispose one to multiple cancers of the lung and, in some cases, cancers of other organs.
All lung cancer survivors, with and without hereditary traits, should continue to have periodic tests at intervals determined by their oncologist.

