1. Is it alright if I tape this conversation?
When life and death 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 subject, 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. 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 replay and review the conversation in a less stressful environment such as your own home to fully comprehend what the physician communicated.
An added benefit is that recording the conversation can facilitate more time with the doctor. When the oncologist knows the conversation is taped they may actually give you a few extra minutes. Furthermore, it provides an advantage to both you and your doctors if there is ever a question later about what was or was not promised.
Do not secretly tape record anyone. In many jurisdictions this is against the law. You should always obtain permission by telling your doctor(s) that you want a tape recording of the meeting/consultation so that you can review it later or you wish to share the conversation with a family member who could not be present at 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 that the meeting is being recorded with their permission.
2. Did you send my pathology (report and slides) to another hospital for a second opinion?
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 check to ensure this step was taken in your case and find out who rendered the second opinion and what they concluded.
3. Do you have any financial or research interest in this treatment you are recommending? For example, are you being paid by a drug company when you prescribe these drugs? Do you consult for the drug company that makes these drugs?
Some oncologists have financial arrangements with various drug makers or other financial incentives that could be construed as a conflict of interest. You should find out whether your doctor(s) has any financial or research interest in recommending a certain treatment.
4. How many patients have you treated with my exact same cancer? Same age and same cancer? Which treatments did you use? Are any of the patients still alive? Can I speak with them?
You want to get a good idea of what the oncologist’s experience is with the various treatments being recommended. You should find out how many patients (your age with the exact same cancer) they have treated with each therapy. Ask if you can speak to these other patients. Other patients (like you) who have been administered the same therapy by the same oncologist(s) can provide valuable insight into what to expect.
5. 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?
Some patients do not die from their cancer, but die from the treatment. You should ask questions to learn how toxic the therapy is.
6. Are these drugs FDA approved for treating my cancer?
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 oncologist intends to prescribe would be used “off label” and if so, why the oncologist is comfortable with that use.
7. 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?
Cancer Monthly provides survival information from the medical/scientific literature – journals your doctors should be familiar with. The oncologist should be able to support any survival/prognosis claim they may make with data or published studies that they can share with you. Be wary, if they can not support their claims of a potential cure with medical studies or with examples of other patients they have treated.
8. What is my prognosis with no treatment?
Comparisons are very seldom made between the results of a clinical trial and those patients who received no adjuvant treatment (i.e. no therapy beyond surgery). When survival and quality of life comparisons are made, they are usually made between two or more treatments, not between treatment and no treatment. It is very difficult, therefore, for an oncologist 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 adjuvant therapy. Nonetheless, 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.