Sunday, December 3, 2017

Questions to ask (and not ask) on a first urologist visit after a biopsy

  1. Am I a good candidate for surgery? What about anatomic abnormalities, previous hernia, effects of anesthesia, cardiovascular disease, diabetes or other comorbidities?

  2. I would like to get a second opinion on my biopsy slides from Epstein's lab at Johns Hopkins. (Here's the link.)

  3. What is my highest Gleason score? How many cores were positive? What was the highest percent of cancer in any core?

  4. What is my stage, and risk level? (You should  know your PSA – if you don’t, ask). How big is my prostate, and what is my prostate density?

    • If stage is T3 or T4: How can surgery be a good option if only the prostate capsule is taken out, leaving the rest behind? Aren’t the side effects of adjuvant radiation worse than if I had radiation at the start? (he may not know this.)

  5. Am I a candidate for active surveillance (why, why not), and if so, what are your Active Surveillance criteria and protocol? Why those and not something more or less stringent? Should I get a genetic test before deciding? Will that be covered by insurance?

  6. How many of the surgery technique you practice (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)

  7. Are you going to be doing all of the really important parts of my procedure yourself? (You need to be particularly careful about this at major training institutions where residents may be doing some parts of the surgery, or even the whole operation, while “your” surgeon is overseeing it.)

  8. In the last year, what was your positive surgical margin rate? (Should be less than 10% among men with stage pT2)

  9. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)

  10. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?

  11. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia? Peyronie’s? orgasmic pain or dysfunction?

  12. What kind of anastomosis technique do you use? (total - not just anterior)

  13. Will the bladder neck be spared? How will you maximize the urethral sparing?

  14. If you have positive biopsy cores near the apex: How will you ensure that all cancerous tissue is removed there?

  15. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?

  16. What measures will you take to assure the integrity of the neurovascular bundles?

  17. What kind of penile rehab do you suggest?

  18. What kind of imaging (Bone scan, CT or MRI) is necessary for men at my risk level?

  19. Will you sample lymph nodes (PLND) or take extended lymph nodes (ePLND), or does it seem unnecessary for my risk level? If so, how will you find them (fluorescent dye)? How will you minimize risk of lymphocele and lymphedema?

  20. What kind of aftercare (including sexual rehab) will you provide, and how will we monitor side effects, and for how long? Will you regularly monitor my urinary and erectile recovery progress with validated questionnaires like EPIC and IPSS?

  21. How will I be monitored for recurrence? Will I get an ultrasensitive PSA test? How will you decide the point at which you would recommend I see a radiation oncologist? Do you use the Decipher test?

Questions not to ask:

  1. Is my age a factor in whether active surveillance is right for me? (only you can decide whether you are willing to live more years with the side effects of treatment, or whether you prefer to be treated while younger when side effects are apt to be less - see this link)

  2. What treatments should I consider and which is the best for me? (this would be asking your doctor to be an expert in treatments outside of his specialty, and also to know which benefits and risks are most important to you – he doesn’t have time or inclination to be expert in all therapies, and he’s not a mind reader.)

  3. If I were your father, what would you recommend? (You don’t know how he feels about his father (lol), and more importantly, what he would feel most comfortable with is not necessarily what you would feel most comfortable with. This is your decision to make and live with – don’t give up your power!)

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