1. Meet your Doctor Prepared

a. If at all possible take another person, (family member, significant other, etc.), to help with taking notes and asking questions about esophageal cancer (EC), and its treatment.

b. Take a note pad, and if possible, a tape recorder.

c. Take an “EC File” consisting of copies of other doctor’s reports, hospital treatment reports, and laboratory reports for reference as necessary. You do need to start keeping such a file at once. Let the doctor or his office copy parts of it as necessary, but keep your primary copies for yourself.

d. Take a copy of all current medications, prescriptions, non- prescription over the counter drugs, herbs, diet therapies, etc, that you are taking, with dosages. Keep this list up to date and always have it handy. Keep no secrets from your doctor. Remember, you are still in control of your own life. Just as the doctor can refuse to provide you with a medication, surgery or other treatment he believes is medically unacceptable, you can decline even what is considered “proper” medical treatment if you wish to do so. But give all your decisions a lot of thought.

e. Initially, for most stage II through stage IV possible cases, there will eventually be the following tests performed: endoscopy and biopsy, a CT/PET scan study, an ultrasound endoscopy and a chest x-ray. Other tests to evaluate a patient’s general health will also be done, such as extensive laboratory blood tests and cardiac tests such as an EKG or a stress test. A pulmonary function test may also be indicated, and so on. Just be prepared to ask questions about the tests so that you understand why they are being done, if you have any concerns.Close

2. Learn What You Can

Know as much as you can about your diagnosis and what has already been done.

a. What kind of cancer is it, where is it, how was it diagnosed, what tests / studies have been done, and what were the results.

b. What doctors have you seen, what doctors are you scheduled to see, and what doctors are you thinking of seeing. For stages II, III and IV EC you need to see at least an oncologist, a surgeon and a radiation therapist. You will also need a gastrointerologist for the initial diagnostic work. Sometimes their opinions may differ. You will have to decide what is best for you. Your primary care physician needs to be kept informed of what is going onClose

3. Pool Resources

Be well prepared and find out all you can from a variety sources, including the Internet. Prepare a written list about things you don’t understand about EC and its treatment.  The Internet can be a great help, but only if you use it wisely.  Go to trusted sources for information such as the US Government and the American Cancer Society.  Other helpful websites include major esophageal treatment centers such as the Mayo Clinic, the MD Anderson Hospital, or Memorial Sloan Kettering Cancer Center.  The teaching hospital of any medical school in your nearby area should also not be overlooked. You may often get useful advice from volunteers on many private web sites, but the answers you get are often just statements of the opinions and suggestions of a single individual and are not very likely to apply to you and your specific situation.Close

4. Specialists are Key

Go to a trusted cancer specialist (e.g. surgeon, oncologist). After the doctor has reviewed your history and done a physical examination, if required, be completely ready to discuss questions and options with him/her. Have a written list of things you need to know. Some items you may wish to go over include:

a. “What tumor stage do you think I am in?” This is very important and should be given in the T N M nomenclature. Be sure to get as complete an answer to this question as you can and record it carefully; every word is important. Also, early in the tumor discussions, the doctor will probably not have enough information to give you specific answers. You may have to wait until days or weeks later in the evaluation, but keep asking.

b. “What is my prognosis that can be made at this time?” This prognosis means a number of things about the expected average course of the disease. It involves such questions as the probability of a cure depending on the treatments given, what complications may be possible or expected, and so on. Ask for specific statements as much as possible. Again, you may have to wait until the results of more tests are available, but keep asking.

c. Remember, the doctor is not “giving” you a number of weeks or years you will live. The number provided is just a well educated guess as to how long most people would live with your stage of the disease and with the same age and other health problems. It is an estimated number and should be treated as such. It will certainly change from time to time. It can be useful for general planning purposes, but be assured it is a long way from a hard fact.

d. Ask for his/her specific plans for optimal treatment for you at this time. Be sure to write down the details of the answer. Get details such as how long the treatment will be, dosages planed, (at least in general terms), kind of surgery proposed, when all this will be done, who will do it, etc.

e. Ask for ALL of the reasonable alternate plans, and the pluses and minuses associated with each of these other approaches.

f. Ask what additional tests or procedures are needed before treatment can start. This is very important. Be sure you understand who will be arraigning the doctor visits or tests.

g. Ask what other doctors you should see. (Remember, most persons familiar with EC suggest that you should get a ”Second Opinion” from a major EC treatment center before starting therapy). This should not disturb or insult the doctor you are seeing; if it does, you may really need to go somewhere else. As I noted before, for all moderately or extensively advanced tumors you should expect to see a specialist in three separate treatment areas; Medical Oncology, Cancer Surgery, and Radiation Oncology.

h. Be sure to ask about “Clinical Trials” if you think you would be interested. These are often available at major treatment centers, and often might result in more advanced treatment options being offered, sometimes at a lower cost, if that is an issue. There are down sides – be sure to ask about those also.

i. Ask about the specialist’s training and experience with EC, and the experience of the hospital where you will be getting your treatment. If this is your potential surgeon, ask how many cases he/she has done, how many cases a month he does, and the mortality and complications he has had with the procedure proposed. (This is sort of like buying a car – you have to know all the facts before you can make an intelligent decision!). Similar questions should be asked of the chemotherapy and radiation therapy specialists.

j. Be sure you know what your diet, medication, and activities limits are to be until you see the doctor or another doctor again. When is your next appointment?

k. Be sure you know what your next steps are. If the doctor has to wait for test results, etc. to be sent to him, find out how and when you can be told of the results and what further to do at that time. When you get test results ask what they mean for you; sometimes the experts forget to do this and it is not to be overlooked.


5. Take Good Notes

Review your notes. After you get home from a doctor’s visit, diagnostic test or treatment, go over your notes, and make additions and explanations as necessary. When you are finished, consider telephoning or using e-mail or a letter to let your family know what happened and how things are going. Dealing with a diagnosis of esophageal cancer or any other malignancy is bound to be about as stressful as anything can be. Be open and honest with your family and primary caregiver, and accept their support and help.Close

REMEMBER: Don’t try to handle all of this alone. Caregivers are instrumental in battling the disease!

Are you ready?

“BE PREPARED” By Richard Stienmier, a Medical Doctor, (Pathologist), who has had chemo-radiation followed by an esophagectomy for esophageal adenocarcinoma and has been free of cancer since 2002.