Learning to Speak Up With Cancer

I recently had the privilege of moderating a panel discussion about what stands in the way of patient-physician communications about neuroendocrine tumors (or NET) and carcinoid syndrome. The discussion was eye-opening.

Conversations between a person with a NET and health care professionals are uniquely challenging because this is a rare and often slow-growing tumor type and most physicians, even community oncologists, see so few cases over their careers that they sometimes are stymied about both the diagnosis and about discussing treatments.

I know how challenging this is, having lived myself with NETs for more than a decade.

Unique as NET is, however, our panel found the communications challenges with this illness mirror many of the challenges seen with other forms of cancer and other chronic diseases.

For those who are diagnosed, you are entering potentially bewildering and frightening territory. Of course medicine and surgery are the foundations of your road to well-being, but our panel agreed that forthright and effortless communications with your health care team is also crucial.

Successful communications means more than conveying information about your medical condition and quality of life; it means ensuring that all members of the health care team — the oncologist, the nurse and others— unambiguously comprehend what is being said. In other words, they have to get it.

As panel member and my friend, Dr. George Fisher, M.D., of the Stanford University Cancer Center noted, “Every doctor thinks he or she is a modern Marcus Welby, with pitch perfect communications skills. The fact is however, many health professionals are, to a degree, tone deaf when it comes to patient communication.”

In fact, one study conducted by researchers at the University of South Carolina suggests doctors allow patients to speak for a scant 12 seconds before interrupting them. If that is true, it indicates that there is a lot of work to be done to get things right.

How To Improve Patient-Physician Communications

Doctors, especially oncologists, want to know what patients are feeling about the quality of life impact of their disease and about side effects of treatments. In illnesses

such as NET, this is especially important as symptoms can make you feel like you are on a physiological roller coaster.

In the modern health care setting however, the doctor’s time is such a scarce commodity that this understanding may not happen unless the patient takes charge of the physician encounter and is prepared to “do a lot of talkin’.” This is not really as daunting as it may appear.

First, you should be prepared to discuss the matters that are most important to you and not verbally wander about. Public health communicators use a term, SOCO—the single overriding communications objective. This is the key point or points that must be conveyed no matter what. Patients, too, need their SOCO. Make a list of the issues that must be discussed. Come prepared with these written out.

Write out your questions in advance as well. People who come to physician appointments with lists of questions get about six questions answered; without lists, that number drops to four questions.

Communication does not simply mean convey information, it also embodies conveying how we feel, which is far more subjective. Some cancer survivors confess that they are often at a loss of words about how their disease imprints on their daily lives. In NET for instance, many say that they are at a loss of words and cannot adequately express how the attendant diarrhea and fatigue affect their social lives and interaction with families. My advice is to take some time well before the physician visit to write out what you feel and how this disease is affecting your life. Improve your articulation by rehearsing in front of a family member or friend.

Relax; your doctor is not going to fire you. There are some patients — especially some newly diagnosed — who fear that if they express frustration or anger, or if they have ideas contrary to their doctor’s, the physician will not want to be their health care provider. Some are afraid that seeking a second opinion is an assault on the doctor’s reputation. Most times, that is simply not true. Most oncologists have thicker skins than we imagine and welcome, not shun, your views.

Capture the moment. A study published in the Journal of the Royal Society of Medicine showed that up to 80 percent of information conveyed by the doctor is lost on the patient. Fifty percent of information that is retained is interpreted inaccurately.

So, have a plan to record in detail what your doctor says. Bringing a companion to doctor’s appointments is smart, if possible; but in lieu of a companion, you should definitely have a notebook in which you can detail your visits.

Giovanna Imbesi, who leads the Los Angeles Neuroendocrine Tumor Society, believes tape recording your visit is worth considering. Recordings can be transferred from a smart phone to an audio file in iTunes or another program for future reference.

While some doctors may eye a recording device like a pistol at an airport security line, they should not. It is a tool to ensure that you are retaining all the information from your appointment and that is not a threat.

Know your limits. Countless articles say you have to be your own best cancer advocate. That’s obvious, and true. But not everyone can be the quarterback of his team. You also need to recognize your own personal limitations. For reasons such as age, experience and language, some survivors are not the best of advocates for themselves. OK, then what is plan B? Can you find someone to always stand with you—a family member, a clinical social worker or a member of a patient advocacy group? That person needs tools and the information to do the job.

Take the yuck stuff in stride. Some neuroendocrine tumors come with a special and unwelcomed bonus—carcinoid syndrome, a condition that often causes unpredictable and sometimes severe bouts of diarrhea. Initially, NET patients may be mortified having to describe these episodes to the physician; please don’t. You will get used to it. Your doctor needs to know exactly how often you poop and the nature of this biological flotsam. Therapies are available to manage this, but they are not available if you fail to flag diarrhea as an issue.

People with other forms of cancer have to contend with similar “yucky” problems. It is simply part of the territory we are now upon.

Finding the new normal. Some cancer survivors, especially those with constant reminders of their disease, such as my fellow NET community members, talk about adjusting to “the new normal.” In my view, however, the point of your health care team is to get you as close to “the old normal” as humanly possible. Why settle for less?

Even people with intractable illness can get closer to their old selves than may think. Eric Liu, M.D., who practices surgical oncology and is co-founder of the Healing NET Foundation, points out that he asks “what bothers the patient the most?” Liu tells patients that he might not cure their illness, but almost invariably he can make their lives better. But he needs to know what is important to them, otherwise it remains unaddressed.

I am reminded of what British scientist and historian Dr. June Goodfield once wrote:

“Cancer begins and ends with people. In the midst of scientific abstraction, it is sometimes possible to forget this one basic fact…Doctors treat diseases, but they also treat people, and this precondition of their professional existence sometimes pulls them in two directions at once.”

The doctors I know — and throughout my journey I’ve gotten to know many — are striving to do their part to focus on the patient. But to do their part means you, their patient and the person living with cancer, need to fulfill your role as well.