Asking Important Questions

Fear of being thought ignorant or pushy has kept many people from asking their doctors about a most important topic-the alternative treatments they read about in the tabloids or hear about from friends. You may be urged by well-meaning people to try methods that will “spare you any pain or discomfort.” Yet they are never available through your cancer specialist. If you are being pressured to abandon the care you are now getting, but haven’t discussed it with your doctor because you think you will insult “establishment medicine,” you might try this approach. “I keep hearing about the bubblegum treatment for cancer. Can you tell me why most American doctors don’t accept it? Why do some people think it works, and why do you believe it won’t?”

What you have asked for is information. You haven’t attacked the treatment you are getting now or the professionals who are giving it to you. And if you are comfortable with the answers you get, it will help you respond when you are urged to try these methods.

Too many fail to ask the medical questions most important to their physical and emotional well being through a fear of “taking up the doctor’s valuable time.” Some say, “I’m sure he told me all this once before.” Of course, you want to be a “good” patient or a “cooperative” family member! But it’s also true: It’s your body. It’s your life. It’s also true that a well-informed patient is better able to understand his or her therapy, its possible side effects, or any unusual signs that should be reported to the doctor.

A good approach can be simply to admit that you are asking for a repeat performance. “I’m pretty sure you told me some of this before, but I couldn’t remember anything; I was so shocked. Now, I think I’d feel less anxious if we talked about it.”

Some are ready to hold this conversation sooner than others. Some ask a few questions at a time, absorbing each piece of information before they are ready to go on. Some never ask directly. (If so, some one in the family should speak with the doctor to learn the extent of disease and the outlook for the future.) But sooner or later, in whatever way you find comfortable, it’s important to let the doctor know that you understand you have cancer and want to talk about it.

In an ideal world, physicians all would be patient, understanding and able to sense your every mood. They would know when to bring out all the X-ray films and lab tests and when to draw only the sketchiest picture of your case. They would have unlimited time to wait until you were ready to ask questions, and then they would gently help you to phrase them in just the right way.

As a matter of fact, books for cancer specialists- physicians, nurses, therapists-and courses in the health professional schools are beginning to emphasize the importance of recognizing the feelings of the person with cancer. Nonetheless, each person is different, and no textbook can describe your unique needs.

In the real world physicians admit that they wait for clues from you, the person with cancer. They need to know what the patient wants to know. Physicians are not mind readers. Whether you like it or not, it is usually up to you to take the first steps toward open communication with your doctor.

Changing Doctors

Some physicians never have learned to speak comfortably with patients or families who are facing what might be a life-threatening illness. These physicians may appear to be abrupt, aloof and uncaring, although they are not. Nonetheless, if his or her discomfort creates a barrier, you might be wise to seek referral to someone else. When fighting cancer you have to work as a team. Lack of trust is fair neither to you nor the doctor. It is fair, however, to let the doctor know you wish to see someone else even to ask him or her for a referral. The physician probably is as aware as you that a relationship based on trust and open communication has not been established.

It is also appropriate to ask your physician to suggest other doctors if you wish a second opinion on the diagnosis before deciding on treatment. There still might be a physician here or there who believes that all cancer is fatal and that “nothing can be done.” In such a case it is only common sense to ask for referral to a cancer specialist.

Most family physicians practicing now, know that nearly half the patients who get cancer today will live out their lives free of further disease, and others can be provided an extended time of reasonable comfort and activity. While continuing as the personal physician, they usually will refer their patients to cancer specialists-surgeons, radiologists, or medical oncologists-for active treatment. (It’s something like an orchestra conductor calling on the soloists while keeping the whole orchestra playing together.)

You need to be honest with yourself and recognize the difference between a physician who believes all cancer is fatal and one who believes the outlook for a particular case is not good. Refusing to promise complete cure is not the same as forsaking the patient.

A physician who uses all available methods to treat the disease, to minimize its effects, and to keep you comfortable and functioning as long as possible is doing everything he or she can to care for your physical needs. How frustrating it is, then, when you seek to relieve your emotional aches and pains, to be rebuffed by the same otherwise excellent specialist. As one man put it, “I found it impossible to discuss the nitty-gritty facts with my doctors and the radiation therapist. I felt that if I told the radiologist how fearful I was, I would be considered childish.” Nonetheless, a decision to change physicians should be based on reality and not on a quest to find a doctor who will promise a cure and guarantee to relieve all your fears.

Information Resources

It’s easier to come to grips with the reality of any crisis if we replace ignorance with information. There is much to learn about each form of cancer, its treatment, the possibility for recovery, and methods of rehabilitation. Well-versed in the facts, you are less likely to fall prey to old wives’ tales, to quacks touting worthless “cures,” or to depressing stories of what happened to “poor old Harry” when he got cancer. Often, the more you know, the less you have to fear.

Local libraries, local divisions of voluntary agencies such as the American Cancer Society, and major cancer research and treatment institutions are sources of information about cancer and its treatment. Depending on the degree of your desire for information and your ability to understand scientific terms, you can get everything from short, concise pamphlets to scientific papers. It’s a good idea to share the fruits of your research with your own doctor. Cancer is a complex set of diseases; the treatment and its side effects may differ slightly for each person.

On a national level, the National Cancer Institute (NCI), which is part of the National Institutes of Health, operates an information office for the public. Its information specialists can answer many general questions about cancer, its diagnosis, and treatment. In addition, the NCI coordinates a network of information offices among the nation’s top cancer research and treatment centers, the Cancer Information Service (CIS). CIS counselors can provide the names of facilities that are most appropriate in terms of both geography and specialization. They also have written materials and information about local self-help and service organizations for cancer patients and their families.

The NCI specialists also maintain lists of excellent cancer hospitals outside the CIS network that are conducting federally funded research in new methods of cancer treatment. They can suggest not only institutions but also specialists with whom your own physician might wish to consult. However, information staff members cannot offer medical advice or arrange for referral to a specific physician or institution.

Emotional Assistance

It is said that we cope with cancer much as we cope with other problems that confront us. Many do come to terms with the reality of cancer. After initial treatment, they find somehow they are able to continue their normal working and social relationships. Or, as one psychologist put it, they learn to get up in the morning and pour the coffee, even knowing that they have cancer. They find, sometimes to their amazement, that they can laugh at bad jokes, or become totally absorbed in a good movie, or a hard-fought football

Reprinted with permissions from the National Cancer Institute