A Clear Vision
Asking the right questions can help patients living with metastatic cancer understand the risks and benefits of recommended treatments and formulate their goals more effectively.
By Charlotte Huff
Gloria Full wasn't surprised that the recommended chemotherapy regimen was aggressive. She and her oncologist were, as Full puts it, 'running scared.' She had completed treatment for stage IV diffuse large B-cell lymphoma in 2006. Five years later, in 2011, a PET scan and subsequent biopsy identified a mass in her nasal cavity. "First thing I thought was, 'Oh, my lord. It's too close to the brain, so let's get going,' " she recalls.
Full, a 68-year-old retired social worker
who lives in Phoenix, was started on the platinum-based chemotherapy combination dubbed DHAP (dexamethasone, cytarabine and cisplatin). Halfway through the aggressive regimen, she and her doctor worried that it was inflicting too much damage on her already suppressed immune system. He suggested a PET
scan to see if the treatment had offered any benefit so far, and to determine what to do next. “On that first one, it showed that the mass had become smaller,” Full says. Armed with that good news, she agreed with her doctor’s recommendation to cease any further cycles of treatment.
Once a cancer patient like Full has developed metastatic disease, a cure is typically out of reach. Instead, cancer treatments are used to keep the malignancy at bay, which may be possible for months or years. These treatments may also keep a patient alive long enough to take advantage of a promising new drug, or even a breakthrough therapy. But as cancer spreads, the treatment decisions can become more complex, requiring patients to weigh the possibility of extending their lives against potentially toxic side effects. Making matters more difficult, the emotional discussions that patients have with their doctors can be pockmarked with confusing statistics and medical jargon. To get the information they require, patients may need to push their doctors to explain in clearer language what the potential benefits might be for them so they can make the best decisions.
Getting Beyond the Jargon
Many cancer patients find the lingo of advanced cancer care, which includes terms like remission, response rate and progression-free survival, awkward and confusing.
“There is this mushy language about cure and recovery,” says Diane Blum, a former chief executive officer of the Lymphoma Research Foundation, a nonprofit organization based in New York City. “Palliative care. Hospice care. Symptom management. Supportive care. What do these words really mean?”
"Palliative care. Hospice care. Symptom management. Supportive care. What do these words really mean?
In part, the vague language reflects discomfort felt by some doctors and patients with the serious decisions that need to be made, Blum says. “It’s not easy to talk to people about the fact that they are not going to do well,” she says. “And it’s not easy to hear that.”
A study published in the Oct. 25, 2012, issue of the New England Journal of Medicine of close to 1,200 women and men with stage IV lung or colorectal cancer illustrates the extent of the communication disconnect. The patients were receiving palliative chemotherapy that might ease their symptoms or prolong their lives by weeks or months. But the vast majority—69 percent of those with lung cancer and 81 percent of those with colorectal cancer—were unaware that their treatment was highly unlikely to result in a cure. This could be, in part, because basic health care decisions are already a challenge for the significant number of American adults who lack health literacy. For example, the 2003 National Assessment of Adult Literacy found that slightly more than one-third of adults struggle to follow directions on a prescription drug label.
Mix in the “existential angst,” as oncologist Lowell Schnipper describes it, of coping with decisions related to a life-threatening diagnosis, and the difficulties grow. “The patient is not in any way, shape or form an authentic consumer in the usual sense of the word,” says Schnipper, the chief of hematology and oncology at Beth Israel Deaconess Medical Center in Boston and clinical director of the Cancer Center there.