Appendix B: Questions to Ask Your Doctor

These questions are organized by clinical situation. Bring this list to your appointments and check off the ones most important to you. Leave space to write down the answers.

At Initial Diagnosis

1. What type of prostate cancer do I have?
2. What is my Gleason score and Grade Group?
3. What is my clinical stage (T, N, M)?
4. What risk group am I in (low, intermediate, high)?
5. Has the cancer spread beyond the prostate?
6. Do I need any additional tests (MRI, PET scan, genomic testing)?
7. What are all my treatment options?
8. Is active surveillance an option for me?
9. Should I get a second opinion?
10. How soon do I need to make a decision?
11. Are there any clinical trials I should consider?
12. Can you refer me to a multidisciplinary clinic?

My doctor's answers:

Before Choosing a Treatment

1. What are the pros and cons of each option for my specific cancer?
2. What is the chance of curing my cancer with each option?
3. What are the main side effects of each option?
4. How will each option affect my urinary function?
5. How will each option affect my sexual function?
6. How will each option affect my bowel function?
7. How long is the treatment? How many visits?
8. What is the recovery time?
9. Will I need hormone therapy? For how long?
10. What happens if the cancer comes back after treatment?
11. What does the latest research say about my options?
12. What would you recommend for a family member in my situation?

My doctor's answers:

Before Surgery (Radical Prostatectomy)

1. How many of these surgeries have you performed?
2. Will it be open, laparoscopic, or robotic?
3. Will you attempt nerve-sparing? On both sides?
4. Will you remove lymph nodes? How many?
5. What is your rate of positive surgical margins?
6. What is your patients' rate of continence recovery at 3, 6, and 12 months?
7. What is your patients' rate of erectile function recovery?
8. How long will I be in the hospital?
9. When can I return to work? Exercise? Driving?
10. Should I do pelvic floor exercises before surgery?
11. What medications should I stop before surgery?
12. What follow-up schedule will I have after surgery?

My doctor's answers:

Before Radiation Therapy

1. What type of radiation do you recommend (EBRT, brachytherapy, combination)?
2. How many treatments will I need and over how many weeks?
3. Will I need hormone therapy with radiation? For how long?
4. What is the simulation process like?
5. Do you recommend a rectal spacer (SpaceOAR)?
6. Will I need fiducial markers?
7. What side effects should I expect during treatment?
8. What long-term side effects are possible?
9. What should I do to prepare my bladder and bowel before each treatment?
10. Can I continue working during treatment?
11. How will you monitor my PSA after treatment?
12. What is a PSA bounce, and should I worry about it?

My doctor's answers:

Before Starting Hormone Therapy

1. What type of hormone therapy do you recommend?
2. How long will I be on it?
3. What side effects should I expect?
4. How will this affect my energy, mood, and weight?
5. How will this affect my sexual function?
6. What should I do to protect my bones?
7. Should I have a DEXA scan before starting?
8. How will you monitor my heart health?
9. Is intermittent therapy an option for me?
10. What exercise and diet changes should I make?
11. Are there medications for hot flashes?
12. When will my testosterone recover if I stop?

My doctor's answers:

Before Starting Chemotherapy or Other Systemic Therapy

1. What drug(s) will I receive and how are they given?
2. How many cycles will I need?
3. What are the most common side effects?
4. What are the serious side effects I should watch for?
5. Will I lose my hair?
6. How will this affect my blood counts?
7. What precautions should I take to avoid infection?
8. Can I continue working during treatment?
9. Are there medications to prevent nausea?
10. How will you know if the treatment is working?
11. What happens if this treatment stops working?
12. Are there clinical trials for newer treatments?

My doctor's answers:

At Follow-Up Appointments

1. What is my current PSA? How does it compare to last time?
2. Is my PSA where you expect it to be?
3. Do I need any imaging or additional tests?
4. Are my side effects normal? Will they improve?
5. Is there anything I can do to manage my side effects better?
6. When is my next appointment?
7. Are there any new treatments or clinical trials I should know about?
8. Should I see any other specialists?
9. When can I consider myself "in remission"?
10. What symptoms should prompt me to call before my next appointment?

My doctor's answers:

If Cancer Comes Back (Recurrence)

1. How do you know the cancer has come back?
2. Where has it come back — locally, in lymph nodes, or in distant sites?
3. Do I need new imaging (PET scan, MRI)?
4. Do I need a new biopsy?
5. Should I have genomic testing (e.g., Decipher)?
6. What are my treatment options now?
7. Is the goal of treatment cure or control?
8. Will I need hormone therapy?
9. Are there clinical trials for my situation?
10. What is my prognosis?
11. Should I get a second opinion?
12. What support resources are available?

My doctor's answers:

About Clinical Trials

1. Are there any clinical trials that might be right for me?
2. What is the purpose of this trial?
3. What treatment will I receive?
4. Is there a chance I will receive a placebo instead of treatment?
5. What are the potential risks and benefits?
6. Will the trial cost me anything?
7. How often will I need to come in for visits?
8. Can I leave the trial if I want to?
9. How will my safety be monitored?
10. Will this affect my other treatments?

My doctor's answers:

About Palliative Care and Goals of Care

1. What is palliative care, and how is it different from hospice?
2. Can I receive palliative care while still getting cancer treatment?
3. What can be done to manage my pain?
4. What can be done to manage my other symptoms?
5. What is my prognosis — honestly?
6. What would you recommend if the goal is quality of life?
7. Should I complete an advance directive?
8. Who can help me with legal and financial planning?
9. What support is available for my family?
10. When should we consider hospice?

My doctor's answers:

For Caregivers to Ask

1. What should I watch for at home?
2. When should I call the doctor versus go to the emergency room?
3. How can I help manage his medications?
4. What side effects are expected, and what is concerning?
5. Are there support groups or counseling for caregivers?
6. How can I help with his emotional well-being?
7. What practical help will he need during and after treatment?
8. How can I take care of myself during this time?
9. Are there financial assistance programs available?
10. Who should I contact if I have questions between appointments?

My doctor's answers: