Joe's Journey

[ Back ] [ Up ] [ Next ]

Note to Visitors: The information contained on this web site is based upon personal experience. It is not intended nor should it be construed as a substitute for consulting with your physician. All matters regarding your health require medical supervision.


The following is a list of questions I have asked each of my doctors. The questions are not categorized in any way though some may seem better suited for a doctor in one discipline over another. However, note that for the most part I've asked these same questions to each of my doctors. I feel that by asking all my doctors the same set of questions I'm in a much better position to determine the proper course of action in the treatment of the disease. Most of the questions tend to be general questions about brain tumors. The questions dealing with treatment options are mostly about radiation therapy as this is the primary treatment my doctors have discussed with me.

Note: I am not a doctor. I don't even play one on TV. I want to make it clear to anyone reading this page that every situation is different. The following list is based on my own personal research and that of my wife. I provide these questions with the hope that they may prove beneficial to others who have been diagnosed with a brain tumor. Hopefully, the ideas expressed in the questions below will generate additional questions for you. Feel free to use the link below to email me with any questions you feel are missing from this list.

Tip: Before visiting with your doctor, prepare your list of questions. Expect in advance that you won't be able to ask them all and prioritize the list. Ask the most important questions first. When visiting with your doctor, bring a tape recorder with you as you will never be able to write down everything the doctor says during the appointment. Ask the doctor for permission to record the appointment before doing so. (Think twice about a doctor who refuses.) By making a voice recording of the appointment, you are free to relax and pay attention to the doctor. Afterwards, in the quiet and comfort of your own home, play back the tape at your own pace and take notes.

  • What are the results of my pathology report? Tumor type? Tumor grade?

  • What does a full body CT scan miss?

  • Should I get a bone marrow scan?

  • Would you suggest getting a full body MRI scan?

  • How long do I need to take anti-seizure medication?

  • What are the chances of the tumor growing back?

  • What are the chances of the tumor spreading to other areas of the brain?

  • What are the chances of the tumor spreading to other areas of the body?

  • How often will I need to be rechecked with a MRI?

  • What are the chances the tumor will come back at a higher grade?

  • Will I need someone to take me to radiation therapy?

  • How "encapsulated" was the tumor?

  • Will radiation therapy cause the tumor to mutate to a higher grade?

  • What are the possible treatments for this type of tumor?

  • What are the advantages / disadvantages of each?

  • What are the expected short and long term side effects of each?

  • Which form of treatment would you recommend if I was your brother, son...?

  • When will you know if a particular type of treatment is working?

  • Are there any supplemental / nutrional aids that will improve the treatments?

  • What types of foods should I avoid?

  • Why should I not get an independent second opinion?

  • How are PET scans used in treating brain tumors?

  • What are the different types of radiation therapy (whole brain, focused...)?

  • What are the different types of radio-surgery (Gamma Knife, Novalis...)?

  • Are there any genetic tests to see what type of treatment is more likely to succeed?

  • What if I elect to do nothing?

  • Will radiation therapy cause other types of cancer?

  • Will radiation therapy make me sterile?

  • Is radiation therapy likely to cause the tumor to grow back sooner?

  • Are there any meds I can take during treatment to improve its effectiveness?

  • How does radiation kill cancer cells?

  • What effect does radiation have on normal cells?

  • Does radiation therapy work better on fast growing tumors?

  • What do you think should be my next step?

  • What sort of a deadline would you suggest for deciding on treatment options?

  • Who do you consider to be the foremost authority on my type of tumor?

  • What discipline of doctor should I be seeing to manage the case?

  • If a cure is suddenly found, how soon can I expect to get access to it?

 

This site is maintained by Joe Vitale and was last updated: August 24, 2004