Words like “respond” and “long-term” provide a reassuring gloss on a dire reality. There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless for him to confront Sara and Rich with that fact now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. They wanted to focus on “aggressively managing” this diagnosis.
So Sara started on the erlotinib, which produced an itchy, acne-like facial rash and numbing tiredness. She also underwent a needle drainage of the fluid around her lung, but the fluid kept coming back and the painful procedure had to be repeated again and again. So a thoracic surgeon was called in to place a small permanent tube in her chest, which she could drain by turning a stopcock whenever fluid accumulated and interfered with her breathing. Three weeks after her childbirth, she was readmitted to the hospital with severe shortness of breath from a pulmonary embolism—a blood clot in an artery to the lungs, which is dangerous but not uncommon in cancer patients. She was started on a blood thinner. Then test results showed that her tumor cells did not have the mutation that erlotinib targets. When Marcoux told Sara that the drug wasn’t going to work, she had an almost violent physical reaction to the news, bolting to the bathroom in mid-discussion with a sudden bout of diarrhea.
Marcoux recommended a different, more standard chemotherapy, with two drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus gemcitabine. Response rates, he said, were still very good for patients on this therapy.
She spent the remainder of the summer at home, with Vivian and her husband and her parents, who had moved in to help. She loved being a mother. Between chemotherapy cycles, she began trying to get her life back.
Then, in October, a CT scan showed that the tumor deposits in her left chest and in her lymph nodes had grown substantially. The chemotherapy had failed. She was switched to a drug called pemetrexed. Studies had shown that it could produce markedly longer survival in some patients. In reality, only a small percentage of patients gained very much. On average, the drug extended survival by only two months—from eleven to thirteen months—and that was in patients who, unlike Sara, had responded to first-line chemotherapy.
She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. In a matter of months, it was as if she’d aged decades. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair.
A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right, to the liver, to the lining of her abdomen, and to her spine. Time was running out.
*
THIS IS THE moment in Sara’s story that poses our difficult question, one for everyone living in our era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, any similarly advanced and incurable condition—what would you want your doctors to do?
The issue has gotten attention, in recent years, for reasons of expense. The soaring cost of health care has become the greatest threat to the long-term solvency of most advanced nations, and the incurable account for a lot of it. In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit. The United States is often thought to be unusual in this regard, but it doesn’t appear to be. Data from elsewhere are more limited, but where they are available—for instance, from countries like the Netherlands and Switzerland—the results are similar.