At the point you learn that you have mesothelioma there’s a good chance you have dozens of questions. If you’ve done any research at all then you know this is a serious disease and many people have a poor prognosis. However, the first thing to keep in mind is that ongoing research and clinical trials are making some progress in increasing survival rates. In the meantime, you main job is to find out everything you can about your condition, prognosis, possible treatments and what to expect in the coming months.
People have difficulty talking to doctors at times. They find them intimidating. A good way to plan for an information session is to write your questions down before you meet. In that way you won’t have to worry about getting nervous and forgetting an important question. Some patients will bring a family member to the meeting so that a second set of ears hears the same information as you. It’s easy to lose concentration when worried about your health and fail to comprehend some of the information the doctor shares with you.1
It’s important to ask all the questions you want answered. The doctor or a medical professional on your team will be able to answer any questions you may have. It’s important to have a frank and honest discussion with your doctor or medical team. This is no time to be shy! Any question you have is an important one so don’t avoid asking a question because you are concerned the doctor might find it silly or trivial. It’s your life and you have a right to ask any question concerning your health. 2
Following is a list of questions that you should consider asking. Add as many to the list as you want because each situation is different.
Questions for your doctor about mesothelioma diagnosis
- What type of mesothelioma do I have?
- Where is the mesothelioma tumor located in the body?
- What is the cell type and what does this mean?
- At what stage is the mesothelioma and what does this mean?
- What complications can occur from my type of mesothelioma?
- What is my prognosis?
- Are there any other tests which need to be performed to get a better mesothelioma diagnosis?
- Should I seek a second opinion and, if so, how should I go about doing this?
Questions for your doctor about mesothelioma treatment
- What mesothelioma treatments are available to me? Is the tumor resectable?
- What treatment route do you recommend and why?
- What is the purpose of the treatment? Remission or alleviate symptoms?
- How will my prognosis change after mesothelioma treatment?
- What are the risks and side effects associated with treatment, both immediately and in the future?
- How should I prepare for mesothelioma treatment?
- What can be done to alleviate symptoms of the mesothelioma treatment?
- How will mesothelioma treatment affect my daily life?
- How long will the treatment last and how often will it be repeated?
- Will I need to be hospitalized for mesothelioma treatment and, if so, for how long?
- Where will the mesothelioma treatment take place?
- What treatment may be recommended if the first-line treatment does not succeed?
- Are there any promising clinical trials which I may be eligible for?
- How much will treatment cost? What resources are available for the emotional, physical and financial burdens of mesothelioma and its treatments?
Further, do not hesitate to ask your doctor about his or her experience with mesothelioma. Even an experienced oncologist may not have managed a mesothelioma case because of its rarity. Ask your doctor about how many cases of mesothelioma he/she has treated and what their outcomes were. You should also ask your doctor about what other personnel may be involved in the diagnosis and treatment process.
The important point is to remember that honesty is always the best policy. Once you understand your condition and the treatments, the questions should not stop. As you experience new symptoms as the disease progresses, the doctor needs to know. Your treatments may need to be adjusted. When medical tests are done, be sure and ask for the results if they are not provided for some reason. Finally, make sure you ask about instructions on preparation for treatments, tests or for living at home with a deadly disease.3
When a patient is diagnosed with mesothelioma, the disease will likely take over the patient’s entire life; much time and effort must be dedicated to pursuing and undergoing treatment. For this reason, the relationship between the mesothelioma doctor and patient is incredibly important. If you do not feel comfortable with your doctor or feel like you are not getting the attention you need, you should seek out another doctor. If your doctor of choice is located in another part of the country, there may be stipends or other resources available to help pay for the costs of travel and housing.
1 Tips for Meeting With Your Doctor or Nurse – Questions to Ask (2011) Retrieved from National Cancer Institute at: http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you/page3#A1
2 What should you ask your doctor about malignant mesothelioma? (2011) Retrieved from the American Cancer Society at: http://www.cancer.org/Cancer/MalignantMesothelioma/DetailedGuide/malignant-mesothelioma-talking-with-doctor
3 How to Talk to Your Doctor or Nurse (2008) Pamphlet prepared by U.S. Department of Health and Human Services National Women’s Health Information.