Why are there Questions but not Answers?

This section has some background and explanatory information, introductions to each section, many questions and NO ANSWERS. There are many reasons why we do not include answers, answers become out of date rapidly, new protocols and drugs become available, your situation is unique and needs individual attention and there is no way we could answer the introspective questions you might have of yourself. However the most important reason to not supply any answers is that these questions are intended to organize your thoughts to make the most productive use of your dialog with your doctors.

You may wonder why any questions need to be created. Isn't it the responsibility of the doctor to supply the needed information? The answer is a little complex. Critical information will be supplied by the doctor, but some information is withheld from people who seem unable to handle the information or make timely decisions. One way to increase the flow of information and to arrive at wise timely decisions is to give the doctors confidence that you can understand, cope and make decisions. Organization in many forms and particularly by focusing on crucial questions gives everyone the confidence that you can participate fully.

Think of these questions as a checklist rather than a source of information. Ideally we would want to have you prepared with these questions before you ever saw a doctor for the first time but the very nature of Esophageal Cancer [EC] is that it so often hides symptoms until it is far advanced. You may very well have gone to a doctor for what seemed to be another problem when your EC was discovered.

You might suppose that a large self help group of EC-patients and caregivers would have "all the answers". Well collectively they have experienced just about every problem that occurs with EC but what they don't have is judgment and background to select the right information. They don't know your medical situation. They do not have the breadth of knowledge in areas of medicine that affect but are not part of EC. They do not keep up with all the latest advances in the area of oncology and simply do not have the years of study and training that are required. Self help groups have many positive roles but answering questions that should be addressed to the medical profession are certainly not among them.

You will be very well advised to search the internet for information. Avoid the obviously commercial websites and worse yet the websites created by cranks and quacks. You may not trust the government and hospital websites but they are far more reliable than anecdotal data and fallacies promoted by the crank and quack websites. If you cannot navigate the internet yourself, you would be well advised to find a close friend who can be your "internet caregiver".

Answers must be evaluated based on the qualifications of the responders. For example members of the EC Group might be validly asked their experiences but they should not be relied upon for medical expertise, medical recommendations or treatments. A word of warning treatments for cancer change more rapidly than most people are aware. Aunt Edna's problems with "stomach problems" or Grandpa Bill's experiences with "colon cancer" are anecdotal information at best. You may also be approached with people who have well intentioned but erroneous concepts about cancer. You should not rely upon these zealots for information about treatments.

Preparations before asking Questions

You are about be subjected to an information overload just at the time when your brain is saturated by worry and confusion. You need every aid you can get to keep things clear and organized. Do not rely on your memory, write things down or better yet record them as they are spoken. Have a second person (usually the caregiver) attend as many meetings with doctors as possible. Not only will the second person act as a second pair of ears but often they will think of questions that elude you at the time. Discussing what was said with this second person consolidates understanding.

You need to be prepared to answer lots of questions that your doctors will have. The more you know about your medical history, possibly family history and your medications the better the doctor will be able to evaluate your situation. Include any herbs you may be taking, diets therapies and over the counter medications. Include all the dosages and the frequency with which you take them. Be honest with the doctors about substance abuse, heavy drinking and smoking. If you have symptoms and complaints, tell the doctor. Don't be "noble" or "brave" and think "I won't bother the doctor with this wimpy complaint." There is another name for this behavior - foolhardiness.

Keep a calendar of your treatments and meetings with doctors. Use the calendar for EC only, and include upcoming events. Record in the calendar not only events, but keep track of things like blood pressure, weight, physical problems and mental problems.

Keep a list of you doctors names and a brief note detailing any tests they may have ordered. You will have no difficulty remembering your primary doctors, buy doctors who did anesthesia, or examined an MRI of your brain, or analyzed your biopsy can be quickly forgotten. You will be amazed how quickly details such as these can slip your mind.

Here is checklist of things you will need to bring to meetings:

Questioners

Two types of people will be reading this information hoping to get a handle on what types of questions need to have answered prior, during and subsequent to EC treatment. One type of person is an EC-patient. The other type of person is a caregiver. Throughout this section both types of questioners will be treated as if the person was the EC-patient except in the special cases where only the patient or the caregiver makes sense. The pronoun "you" refers collectively to both the EC-patients and their caregivers.

As you progress through treatments, the nature of your questions will undergo two types of changes - they will become more specific and they will become restricted to your situation. Early on you will be asking questions about the likely nature of treatments. You may worry prematurely about specific side effects of this or that treatment or drug. Until this treatment is suggested or that drug is selected worrying about them will simply flood you with irrelevant information obscuring critical near term considerations with extraneous data. Focusing on immediate problems for now and waiting until later for late term questions is good advice.

The Questions

Questions in this section are addressed to various doctors, and introspectively to the EC-patients and the caregivers. No matter what the medical specialty of a given doctor, these doctors are addressed by the role they are playing. For example, a "lead doctor" is the doctor who is directing the EC-patient's overall treatment no matter if that doctor is a medical oncologist, a surgeon or perhaps a primary care physician.