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?”

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.

Clinical Avenues

Metastatic patients could benefit from clinical trials.

Patients with advanced cancer should consult their doctors about clinical trial options that may be available, says oncologist Neal Meropol of University Hospitals Seidman Cancer Center and Case Western Reserve University in Cleveland. “Patients should ask their doctors, ‘What do you think the chances are that this will help me?’ ” Clinical trials can provide access to a promising new drug that may not otherwise be available. In addition, participating in a clinical trial can help other cancer patients in the future.

Clinical trials may involve a new drug by itself, or sometimes one that is being tested in combination with a standard treatment, Meropol says.

Phase I: Restricted to a small number of patients, 20 or so, with advanced disease. These patients cannot be treated with existing treatments or no treatment exists for them. Researchers are primarily looking at the drug’s safety and side effects, and determining the maximum dose that can be administered.

Phase II: Researchers enroll larger groups of patients, potentially as many as 300, and continue to study a drug’s safety. They also begin to study its effectiveness. Patients may qualify even if they’ve received other treatment.

Phase III: Involves 100 to several thousand patients who are randomly assigned to one of two or more treatments, such as the standard regimen for the control group and an experimental treatment for a second group. Both effectiveness and side effects are compared between the groups. Previously treated patients may be eligible to enroll.

Besides giving patients access to drugs they might not get otherwise, research trials closely monitor participants, so patients benefit from regular medical care. To search for a trial that’s accepting participants, go to the National Cancer Institute's clinical tria​ls website.

Know the Goal

Full now admits that when she was first diagnosed in 2005, she told her oncologist that she didn’t want to know her long-term prognosis, or even the stage of her lymphoma. (Later she learned that it was stage IV.) Instead, she remembers telling him, “I just want to move forward, and I just need to do whatever needs to be done.”

Some patients don’t want to know all of the nitty-gritty details about their prognosis, but they still want to capture the big picture as they weigh treatment options. Neal Meropol, an oncologist specializing in gastrointestinal cancers at University Hospitals Seidman Cancer Center and Case Western Reserve University in Cleveland, recommends that patients start by asking their doctors a wide-angle question like, “What are the goals of treatment?” For patients who have metastatic disease and most likely cannot be cured, he says, the goal could be shrinking the cancer, easing symptoms or buying enough time to attend a child’s graduation or wedding.

Once the goal has been determined, Meropol advises that patients press their doctors to move beyond statistical averages and attempt to quantify the likelihood that the drug or radiation treatment will achieve the specific goal. For example, asking, “What is the best possible outcome, what is the worst possible outcome and what is the most likely outcome for me?” puts doctors on the spot to assess, based on their expertise and knowledge of the patient, what they believe is likely to occur.

Cancer patients should keep in mind that vague questions can elicit similarly vague answers, says Thomas Smith, an oncologist and palliative medicine specialist at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University in Baltimore. “Don’t ask, ‘Will the therapy work?’ ” Smith advises, “because the doctor might say, ‘Oh, it’s got a 40 percent chance of working.’ ” But that 40 percent figure, he explains, could mean the cancer has a 40 percent chance of being cured, a 40 percent chance of shrinking by half, or a 40 percent chance of not growing further.

Rather than get mired in a potential sinkhole of statistics, Smith suggests that patients ask, “What’s the chance of [the treatment] making my cancer shrink by half?” Shrinking by half has been a traditional way to measure cancer treatment response, Smith says. “Then, you should also ask, ‘If it shrinks, how long will it last?’ ” Another good question for the doctor to address is what impact the treatment will have on quality of life.

To guard against statistical misunderstandings, a patient can ask the doctor to express numbers in more visual ways, Blum says. A treatment that doubles the survival rate sounds impressive. But doubling the rate might mean only that 8 percent of patients are alive versus 4 percent previously. Rather, Blum recommends that patients adopt this approach with their doctor: “I’m sitting in a room with 50 other women or 100 other women. If we all got this treatment, how many of us would have this kind of response?”

Deciphering Study Terms

Cut through the medical jargon.

Reading medical studies can require running a gauntlet of medical jargon and related acronyms. Here’s a primer to decipher some frequently used terms:

Remission:

  • May be partial, with a decrease in symptoms or signs of cancer. With complete remission, cancer can’t be detected but may remain somewhere in the body.

Response:

  • Complete response (CR): All signs of cancer have disappeared; also called complete remission.
  • Partial response (PR): A decrease in the size or extent of cancer; also called partial remission.
  • Stable disease (SD): As implied, the cancer is holding steady.

Survival:

  • Overall survival (OS) rate: The percentage of people still alive after a certain period of time. Five-year survival is one benchmark that’s used frequently.
  • Progression-free survival (PFS): The length of time after treatment that the cancer doesn’t worsen.

Source: National Cancer Institute

Getting on the Same Page

To advocate effectively for themselves, patients need to do some soul searching as they sort out the next treatment step to take, or not. In short, to what degree are they willing to risk their daily quality of life for a dwindling shot at increasing their long-term survival?

Patients should not make the mistake of assuming that their doctor’s goals and mind-set mirror their own, says Peter Ubel, a physician and behavioral scientist at Duke University in Durham, N.C. The doctor might believe that you care most about your chance of surviving six months, “no matter what you have to go through to get there,” says Ubel. The doctor is the expert on the medical facts, he says. “But you, the patient, are an expert on you.”

To finesse any differences in perspective, Ubel suggests that patients ask their doctors to explain why one patient would opt for the suggested treatment—and why another might not. “You might figure out which of those people are more like you,” he says.

Other possible questions suggested by Ubel: What else do I need to know to make this decision? What else might help me decide whether it’s worth it or not?

A Progression-Free Caution

What does progression-free say about overall survival?

Increasingly, progression-free survival—the stretch of time after treatment that the cancer doesn’t worsen—is being used to evaluate a drug’s effectiveness. An analysis in the April 1, 2012, Journal of Clinical Oncology (JCO) found that 26 percent of studies appearing in the journal from 2005 to 2009 relied on progression-free survival compared with just 2 percent of studies published two decades earlier.

But the JCO authors, who were critical of progression-free survival as a marker, reported that only studies involving advanced colorectal cancer and advanced ovarian cancer showed a correlation between progression-free and overall survival. Other studies did not, including those involving prostate cancer, non–small cell lung cancer and advanced breast cancer. For some patients with advanced cancer, however, progression-free survival might be a good enough result, depending upon the treatment’s related side effects, says Diane Blum, a former chief executive officer of the Lymphoma Research Foundation, a nonprofit organization based in New York City.

Patients also should request a second opinion, or time with a helpful nurse in the office, if they feel their questions and concerns haven’t been adequately addressed, Ubel says. No matter how technically proficient doctors are, he says, “If they can’t help you decide if the chemotherapy is worth taking, then you are missing out on one of the most important skills that a clinician should have.”

Full, following her abbreviated chemotherapy regimen, continued to be blessed with good news. The mass in her nasal cavity shrank over subsequent months and, as of this summer, wasn’t showing any activity on PET scans, she says.

Her oncologist is supportive but doesn’t overpromise. When Full recently asked him about his goals for her, “His response was, ‘I’d like to buy five more years.’ ” If the cancer flares again, Full will ask about the new game plan. For now, she embraces each day and appreciates how “incredibly well” her cancer has responded.

“I am currently in remission, but we’re always on guard,” she says. “We are. We have to be.” 

Charlotte Huff is a freelance writer living in Fort Worth, Texas, who specializes in reporting on health and business issues.