Last year Denise Roskopf, 45, learned she had breast cancer—specifically, invasive ductal carcinoma, an early but potentially aggressive form of the disease. Hoping to maximize every chance of the cure her doctor had said was in reach, Roskopf, of Hartford, Wisconsin, vowed to learn all she could. As the unit secretary at a hospital, she was at ease with medical language, and she dived right in. Using charts provided by her doctor, who instructed that she study them, she sat down with her husband, poring over every last treatment option and its predicted result.

Navigating the choices, she was able to add percentage points to her original estimated chances of survival just by doing the math. For instance, 90 of 100 women with her kind of cancer would be alive 10 years out with no further treatment beyond mastectomy. Add hormone therapy, and 92 of 100 would be alive. Combine hormone therapy with chemotherapy, and 95 of 100 would be alive. Those percentage points were meaningful to Roskopf, so after having her left breast removed, she elected to be as aggressive with treatment as she could.

Susan Langley, a stage IV breast cancer patient at Memorial Sloan-Kettering Cancer Center in New York City, preferred a softer, less math-based approach. Nine years ago Langley, then 50, was diagnosed with early-stage breast cancer. Her oncologist was encouraging, telling her that her stage II, estrogen-positive tumor would be very treatable. “After the anger, tears and despair, I decided to fight it,” she says. “I sailed through chemo and I was never even sick. I wondered if it was working until, finally, I lost my hair.”

A friend of Langley’s who took notes at one of her medical appointments reports that the doctor did, in fact, rattle off a series of facts and figures. In retrospect, Langley wishes she’d heard a little more, especially the often brushed-over statistic that some 30 percent of early-stage patients will eventually suffer a recurrence, as she herself ultimately did.

Yet Langley isn’t prone to pick her doctor’s brain for every last detail right now. Too many specifics could sap her spirit. “My doctor is honest with me,” she says, “but he doesn’t volunteer information that I don’t ask for. The important thing, for me, is knowing that he knows how to treat me. He’s a wonderful doctor. If I want more information, I’ll ask for it. I know how to advocate for myself, but right now I don’t need extra weight.”

Information to Order

Roskopf and Langley have two different approaches to information—and two different methods for getting the best cancer care they can. As their stories illustrate, getting what you need—no more and no less—can be challenging when dealing with something as emotionally wrought as cancer. One reason for the difficulty is you, the patient; the other is your doctor. Just as you want to know the details, including the specifics of your prognosis, you’re also scared to know too much. Who wants the week ruined by news that you’ll need more surgery or another round of chemo? Who wants to hear that cancer has returned? And who wouldn’t want bad news put off at least one more day?

Ambivalence on the part of patients is compounded by doctors, who are, after all, only human. They don’t like seeing patients get upset, and certainly don’t enjoy serving up bad news. They may be tone deaf to patients’ emotional needs, using the same style of communication—be it overly blunt or especially reserved—no matter who walks through their doors.

Beyond all this, doctors and patients inhabit different worlds. Doctors may be trained to treat disease, but the personal experience of illness, its fear and loneliness, is something many of them lack. Brown University professor of medicine Michael Stein, M.D., author of The Lonely Patient, published this year by William Morrow, comments that the chasm between doctor and patient can sometimes be vast. Patients may not fully appreciate how little the doctor really knows about them as people with specific emotions and inner lives, he says. Patients talking to a doctor may assume he or she can understand their meaning “in all its shadings, its context and weight.” But in most cases, he says, they are telling everything to someone who knows nothing about them “except the barest medical facts.”

This means that when patients want information delivered in a specific way, they must explicitly explain their preference to the doctor. Patients are accustomed to doctors setting the information agenda, says Anthony Back, M.D., of the Seattle Cancer Care Alliance, but unless they tell the doctor how much they want to know, they may not get what they need.

And for the cancer patient, in particular, information is key. Discussing one’s cancer can be life affirming or unpleasant. But even the sickest patients subject to the worst news need information to make decisions about their care. How can you decide between two therapeutic paths without knowing what benefit and risk each confers? Knowing the score allows you to assume responsibility for your treatment and make life plans, whether attending your daughter’s wedding or arranging your retirement. Understanding the pain a treatment might cause versus the chance it will cure you or lengthen your life, and by exactly how much, is part of the calculus any thoughtful patient performs.

Opening the Floodgates: Telling Your Doctor You Want It All

Information is critical, but different patients want it served in different ways. Some want every shred of information, even if disheartening, so they can be masters of their fate. Others feel that statistics are misleading and that worst-case scenarios about side effects or their very chances of survival rob them of hope and the ability to fight.

If you are among the majority of today’s cancer patients who want as much information as you can get, says Back, you must explain that to your doctor as emphatically as you can. You may need to overcome the physician’s discomfort at sounding so blunt by literally giving him or her permission to speak out. According to Susan Block, a psychiatrist at the Dana Farber Institute in Boston, patients who want information should be straightforward. She suggests saying something like, “I know you don’t know me, but I want to tell you, up front, that I want to hear all the information about my illness.” Tell the doctor, specifically, that you want to know how bad side effects may become as therapy progresses, and exactly what chance there is that it will or won’t work.

Make it clear that you want to hear the worst-case scenario or doctors may sugarcoat the truth, Block adds. No matter what level of detail you want, “it’s important to remember that you own your information. Despite being the rightful owner, it may not be easy for you to get it all. If the doctor won’t share, there is a problem with that physician,” she says.

Anthony Back, meanwhile, reminds us that the news can be frightening. “If the emotion hits you, feel free to say, ‘I’m a little scared. I’d like to take a moment,’” he suggests. “The doctor may not think to give you a moment, but you should insist upon taking it.”

When Less Is More

But what if the burden of information will only stress you out or rob you of the will to fight? Palliative care doctor Robert M. Arnold, M.D., of the Institute for Doctor-Patient Communication, University of Pittsburgh, says that patients who want a little less—and who therefore want doctors and family members to carry more for them—must set limits at the start. Arnold suggests telling your physician something like, “‘I want to tell you, right up front, how I’d like to hear bad news. I don’t like all the details. They frustrate and confuse me. My daughter is more medically sophisticated. I would rather go through her.’”

Back says you can get what you need, but no more, by insisting that information be concrete, and on a need-to-know basis. “Let’s say you have been diagnosed with an aggressive cancer and you have a child graduating from college in six months. You may want to know whether or not you’ll make it to the ceremony—so you can ask something as straightforward as, ‘Doctor, will I be able to make it to that graduation in June?’ The doctor can either ease your mind by saying, ‘Yes, I don’t see why not,’ or might tell you that you may not make it because of medication side effects or the limits of your expected life span. That would give you a chance to prepare.” If you want information withheld, emphasizes Block, you should appoint a surrogate in your stead. “If no one in your circle grasps the big picture, then your doctor will be making your decisions for you, and that’s an enormous risk,” she says. The doctor may have different values. She may withhold treatment you would want, or put you through painful, futile therapies you would rather avoid.

When It Comes to Prognosis

The most difficult discussion a cancer patient and her doctor can have revolves around prognosis. Studies show that 85 percent of cancer patients prefer to hear the survival odds for their kind of cancer, even when they know the numbers apply to a group, and not specifically to them.

Nancy Alfred Persily was an associate dean of public health at the State University of New York, Albany when she learned she had breast cancer in 2002, at age 59. With access to the best that medicine could offer, she underwent radiation and lumpectomy and then entered a clinical chemotherapy trial. “My cancer was stage II, but with an excellent prognosis because there were cells in just a single lymph node,” she explains.

She went about her life, continuing in her high-powered job until the cancer spread to stage IV. Persily felt she needed to know what this meant in terms of expected survival. Her husband had died suddenly when an embolism killed him during routine back surgery 20 years before, leaving her with two teenagers to raise on her own. “I wanted to make sure things were more settled for me,” she says. “I promised my children that I would always tell them the truth, and that meant knowing it myself.”

Pushing her doctor in Albany for the unadorned statistics, Persily found the numbers harsh. “She said when you become stage IV with my type of cancer—triple-negative—you live an average of two years.” Persily received a more optimistic assessment from the doctor she saw for a second opinion. “Remember,” that doctor told her, “breast cancer is treatable now. There’s a lot we can do.” The statistics, after all, reflected a population average, and did not refer to Persily herself.

Yet Persily looked to the minimum time, not the blue-sky maximum, to get her tasks done. She finalized her will and sold her house. She organized her finances and eventually went on disability. She found an apartment near her children in Manhattan, and transferred her care to Memorial Sloan-Kettering.

“The two years have come and gone, and I’m still here,” Persily reflects. “Now that things are in order, I’ll just keep living.” While she won’t hide her head in the sand, Persily won’t chase her prognosis again.

Wherever you stand on the prognosis issue, you must be very clear with your physician about what you want. Block suggests saying, “I especially want to know about my prognosis, and please give me a range—a best case, a worst case and an average.”

It’s important to be emphatic because doctors buffer bad news with overoptimism, starting a game of telephone in which each person in the chain exaggerates the time that remains. University of Chicago doctors Nicholas Christakis and Chris Lamont showed that if a patient has 3 months to live, a doctor will tell the patient 6 months and the patient will hear 15 months. The misunderstanding may rob patients of the chance to prepare a will, say good-bye to friends, take a last trip, or do any number of other things they care about most.

Striking a Balance

No matter how much you want to know, and how set you are on owning your personal information, there may come a point when more information is useless. A patient may feel better knowing she has her finger on the pulse of research, but infinite amounts of extra material won’t necessarily help her select the treatments to get well. “Sometimes all that information may be a U-shaped curve,” says Anthony Back. “The more you have, the more confused you may feel. If you feel that you have already made good decisions, it’s all right to stop the information flow,” he says.

The important point, adds Pittsburgh’s Arnold, is that each patient’s needs are different—and every doctor has a different style and comfort level in dispensing material that is complicated or bound to cause stress. When it comes to choosing a doctor to communicate with you, you may do well to go with your gut. “Find one you trust and like. Find a good fit,” Arnold advises, because how you get your information may ultimately determine your care.

As for proactive Denise Roskopf, the hospital secretary, she’s currently in remission, but still makes decisions based on all the information she can get. “In November 2006 I had my right breast removed, too,” she reports. “I felt it was my breast for my life, and I was happy to make the trade.” She made the decision after careful consideration of current statistics and her family history. Says Roskopf, “I’ll always believe that the more I know about all of this, the better my calls.”