Questions to Ask
Questions to AskAfter Bryan's diagnosis, we had so many questions. However, during the appointment itself we were too stunned to think of any. Once we had come to our senses and regained our composure, we had an endless list of questions but weren't sure which ones were the "right" ones to ask. Here are some of the questions that I found most helpful and wish someone had shared with me in advance.
A. Questions About Diagnosis
While diagnosis can be a really overwhelming moment, it's also the time to be prepared to ask questions. These questions will help you understand what type of tumor you are dealing with, how long you have had it, and how fast it is growing. If you're unable to ask questions during the diagnosis appointment, having this list will help you later on when you see the doctor a second time and/or get a second or even third opinion (which we 100% recommend).
- Can we see the MRI on a large computer screen?
- Can you scroll through the "slices" or cross-sections of the MRI so we can see the entire tumor?
- What is medical name of the tumor?
- Where is the tumor located within the brain?
- What causes this type of tumor?
- Approximately how long has the tumor been there?
- What grade is the tumor (the "grade" indicates how aggressive the tumor may be. Low-grade tumors are less aggressive while high-grade tumors are more aggressive and resistant to treatment).
- Are there any areas of concentration that indicate areas of more aggressive growth?
- Can the tumor be biopsied to confirm the type of cells?
B. Questions About Symptom Management
Symptoms associated with brain tumors are most often what got you to this point. However, there are methods to manage symptoms, so make sure to ask what your doctor thinks is best.
- Which neurological (brain) and physical (body) functions might be affected by the tumor?
- Are there pills or treatments to help manage symptoms? If so, what are they?
- Do you recommend steroids? If so, how do they work and what are the short- and long-term risks, benefits and side effects?
C. Questions About Treatment
There are three most common treatment options for brain tumors: surgery, chemotherapy and radiation. However, within each of these categories there are a multitude of options. Make sure you're clear on what your doctor is prescribing, know the risks and benefits of treatment, and while each treatment is different, get as a clear a grasp as possible on what to expect.
Surgery
- Can the tumor be removed through surgery? If so, how does that work?
- What are the benefits of surgically removing the tumor?
- What are the risks and side effects associated with surgery, e.g. permanent nerve damage, etc.?
- Where does the surgery take place?
- Can I tour the surgery center, meet the technicians and see the technology prior to surgery?
- What is the best way to prepare for surgery?
- How long does it take to get an appointment for the surgery?
- Who would perform the surgery?
- Is it "awake" surgery or under anesthesia?
- What can be expected from the recovery period?
- Do you expect the tumor to come back?
- If surgery is not an option, what are alternative treatment options?
Chemotherapy
- What is chemotherapy?
- Do you recommend chemotherapy? If so, why?
- What effect does chemotherapy have on the tumor?
- If so, do you recommend chemotherapy pills or an IV infusion? What are the specific differences between each?
- What are the short- and long-term risks and side effects of chemotherapy in treating the tumor?
- What are the short- and long-term benefits of chemotherapy in treating the tumor?
- How long would he need to be on chemotherapy?
- Do you recommend chemotherapy and radiation therapy together?
- Are there any foods or vitamins to avoid while on chemotherapy, e.g. vitamin C and E supplements, etc.?
- Do you recommend any supplements to help during treatment, e.g. flaxseed oil, Lovaza (prescription fish oil), daily multivitamin, etc.
Radiation Therapy
- What is radiation therapy?
- Do you recommend radiation therapy as a treatment for the tumor? If so, why?
- Do you recommend radiation therapy and chemotherapy together? If so, why?
- What effect does radiation therapy have on the tumor?
- If so, what type of radiation do you think is the best treatment for the tumor?
- Can you explain the different types of radiation and their benefits, e.g. Gamma Knife surgery, IMRT, direct radiation?
- What requirements are necessary to be a candidate for Gamma Knife surgery?
- What are the short- and long-term risks and side effects of radiation therapy, e.g. fatigue, nausea, skin irritation, weakness, damage to healthy brain cells, etc.?
- What are the short- and long-term benefits of radiation therapy, e.g. tumor shrinkage, tumor stability, etc.?
- Where does radiation therapy take place?
- Can I meet the radiation oncologists, technicians and tour the radiation facility prior to starting treatment?
- What type of radiation machine does the hospital have and how does it work, e.g. Varian Trilogy?
- Is a radiation mask required? What do you do to help people with claustrophobia?
- Do symptoms to change from week to week during radiation? If so, what's the best way to manage the symptoms?
- How many sessions of radiation would you recommend?
- How long is each session?
- What, if anything, can a patient expect feel during and after each radiation session?
- Are there any foods or vitamins to avoid while undergoing radiation therapy?
- Do you recommend any supplements to help during treatment, e.g. flaxseed oil, Lovaza (prescription fish oil), daily multivitamin, etc.
D. Questions About Recovery
Recovery from a brain tumor is a long, winding road. It will not happen overnight, so settle in and be patient. Frustration and even depression are common during recovery, both for the patient and caregiver, so if you need to talk to someone or seek out help, don't hesitate. The most important thing is to maintain a positive attitude and keep up the fight.
- What are the next steps?
- When is the next MRI? What are the best- and worst-case scenarios for the next MRI?
- How often should a patient see their doctor for follow-up appointments?
- What can a patient expect during the recovery period, e.g. how long will recovery take, how will they feel, etc.?
- Will symptoms change or go away throughout the recovery period? If so, which ones will go away first?
- For how long can a patient expect the symptoms to go away?
- Is the patient susceptible to over-stimulation, a post-radiation side-effect?
- Is the patient a candidate for a temporary handicapped parking placard? If so, have the doctor provide and fill out the request form.
- Is physical, occupational or speech therapy an option during recovery? If so, can you provide a referral to a neurological rehabilitation program?
E. Questions About Insurance
Insurance is so incredibly important when it comes to brain tumor treatment, as the cost of a single MRI can exceed $1000. Make sure you are clear on your insurance provider's policies when it comes to choosing your doctors, paying for office visits, imaging scans, treatment, etc. Always have your insurance card with policy/group ID and phone number readily available.
- Does the hospital accept our insurance plan?
- Is the insurance plan PPO, EPO or HMO?
- Are the doctors' in or out of the insurance company's network?
- Exactly what is and is not covered by the insurance plan?
- Are there co-pays for each doctor's visit? If so, how much is each payment and does it vary by doctor?
- Does the hospital provide any discounts beyond insurance?
- What are the difference between statements and bills?
- How can a patient dispute an insurance charge or claim?
F. Questions About Doctors & the Hospital
This is nothing more comforting than having a team of doctors whose goal is to help you with any and all questions or concerns, day or night. In order to make it easier on myself, I have entered each doctor's name, department, title, phone and fax number and email address into my cell phone's address book. That way, they are there at a moment's notice when I have questions about medication prescriptions, my husband's symptoms, appointments, etc.
- Do you have any previous patient referrals with whom we can speak?
- Is the doctor on-call in the event we have questions? If not, who can we contact?
- What are the doctor's, physician's assistant, nurses, and front desk associates direct office phone numbers, fax numbers and email addresses?
- Will the doctor provide us with his cell phone number?
- Who should we call for help "after hours?"
- Are there support groups for patients and caregivers?
