Consultations with doctors and other clinicians take on critical importance as you gather your facts to make informed treatment decisions. But, there is a problem. During these sessions people are stressed and emotional. Yet, it is at this very same time that you must be calm and decisive. You have to be at your best when you are feeling at your worst. These tips were designed to help.
When critical decisions are at stake, conversations with oncologists and other physicians take on enormous importance. In addition, sometimes these conversations take place when the doctor is very busy. Given the hurried bedside manner of some physicians and the emotional intensity for the patient and family, it can be very hard to listen, understand, and ask appropriate questions during these critical consultations. Tape recording important conversations with your doctor(s) about treatment options is an excellent way to provide a record so that you can: 1) concentrate on listening; 2) do not have to worry about taking notes; 3) can focus on your questions; 4) can share the conversation with a family member or friend who could not attend the consultation; 5) and can replay and review the conversation in a less stressful environment such as your own home to fully comprehend what was communicated. An added benefit is that recording the conversation can facilitate more time with the doctor. When the doctor knows that the conversation is being taped they may be more courteous, patient, and provide more information and options. Furthermore, it provides an advantage to both you and your doctors if there is ever a question later about what was or was not said.
You should not secretly tape record anyone. In many jurisdictions this is against the law. You should always obtain permission by asking everyone in attendance at the consultation that you want a tape recording of the meeting. In fact, it is always a good idea to use the first few seconds of the recording to have all the parties acknowledge on tape that the meeting is being recorded with their permission.
Questions During Treatment Consultations
Typically, during these consultations, the doctors control the conversation. They have participated in these meetings many times before. So, while it may only be the first or second time for you, it may be the thousandth time for the doctor. This means that doctors will typically share with you the information that they think, based on their experience, is important. The problem is that this may not be the information you want. Therefore, here are some basic questions to consider asking:
Pathology Second Opinions
The pathology of your tumor cells tells pathologists whether you actually have cancer and what kind. Having a second look/opinion by another pathologist from another hospital helps ensure that you have been properly diagnosed. There have been unfortunate situations when patients have been treated inappropriately because the wrong kind of cancer was diagnosed. In many hospitals it is standard practice to “send the slides out” for a second opinion. You may want to ask to ensure this step was taken in your case and find out who rendered the second opinion and what they concluded. Or, if this step was not taken, why the doctor thinks it is unnecessary.
Treatment Track Record
With any treatment, even a clinical trial, there is a track record. The only exception would be if you are the very first patient to be placed on this therapy. This is rarely the case, so there are records, data, and often published medical articles pertaining to the performance of nearly every therapy. This is information you may want to have and the following questions address this:
* How many patients have you treated with my exact same cancer? Were they the same age and in the same general state of health?
* Which treatments did you use?
* Did any patients have side-effects from the treatment? What were they? What was the worse side-effect? Did anyone die from the treatment, not the cancer? (Note: Some patients do not die from their cancer, but die from the treatment. You should ask questions to learn how toxic the therapy is.)
* What were the results for both survival and quality of life?
* Can you show me where the survival information comes from? Is it reported in the peer-reviewed published medical literature? Can you give me a copy of the article?
* Are any of the patients still alive? Can I speak with them? (Note: Other patients (like you) who have been administered the same therapy by the same oncologist(s) can provide valuable insight into what to expect.)
* Are these drugs FDA approved for treating my cancer? (Note: Many cancer drugs are not FDA- approved for the use for which they are prescribed. (This is called “off-label” use.) In fact, some drugs that are widely used for a particular cancer may never have been approved for safety or efficacy for that use by the FDA. It is valuable to know if any of the drugs the doctor intends to prescribe would be used “off label” and if so, why the doctor is comfortable with that use.)
Treatment Conflicts of Interest
Drug companies sometimes pay doctors a certain amount of money per patient for each patient placed on the drug company’s clinical trial. In addition, some doctors are involved in oncology companies as owners or consultants. Furthermore, the chemotherapy concession allows oncologists to make profits on various chemo drugs they prescribe. For all of these reasons you may want to ask your doctor if they have any financial or research interest in the treatment they are recommending.
What is the Prognosis With No Treatment?
Comparisons are very seldom made between treated and untreated patients. When survival and quality of life comparisons are made, they are usually made between two or more treatments, not between patients who received a treatment like chemotherapy and patients who received no treatment at all. It is very difficult, therefore, for a doctor to objectively answer the question how long did the treated patients live and what was their quality of life compared to those who received no therapy. Nonetheless, if you are discussing a therapy that has serious side effects, it may be of interest to ask your doctor for a reference/study that discusses this. Be advised that such studies may not be available. In fact, we recently asked an Associate Professor of Clinical Epidemiology at Columbia University to suggest articles on this very topic. So far she has provided only one.
In conclusion, it is your body and your life. Don’t be intimidated by the doctors. Get the answers you need to make an informed treatment decision.