Ralp consult today

Have appointment today with surgeon for RALP consult in Peoria Illinois At OSF Saint Francis. I have my questions in hand thanks to this forum. Time keeps moving on even if we want it to slow down.

Here's the list of questions I give patients who are seeing surgeons:

Questions for surgeons

1. Am I a good candidate for surgery? What about anatomic abnormalities, previous hernia, effects of anesthesia, cardiovascular disease, diabetes or other comorbidities?
2. Do you think it’s a good idea for me to get a second opinion on my biopsy slides from Bostwick or Epstein? (Yes!)
3. What is my stage, and risk level? (You should know your Gleason score and 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.)
4. 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?
5. How many of the surgery technique you practice (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)
6. 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.)
7. In the last year, what was your positive surgical margin rate? (Should be less than 10% among men with stage pT2)
8. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)
9. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?
10. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia? Peyronie’s? orgasmic pain or dysfunction?
11. What kind of anastomosis technique do you use? (total - not just anterior)
12. Will the bladder neck be spared? How will you maximize the urethral sparing?
13. If you have positive biopsy cores near the apex: How will you ensure that all cancerous tissue is removed there?
14. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?
15. What measures will you take to assure the integrity of the neurovascular bundles?
16. What kind of penile rehab do you suggest?
17. What kind of imaging (Bone scan, CT or MRI) is necessary for men at my risk level?
18. 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?
19. 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?
20. 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)
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!)

Zauberer, before you make a final decision can I suggest you ask yourself the following questions:

1. Do you feel truly educated about our disease, having read the sticky thread at the top of our forum and books such as Dr. Walsh's, "Guide to Surviving Prostate Cancer" and Dr. Scholz', "Invasion of the Prostate Snatchers"?

2. Have you gotten a second opinion on your biopsy slides from a true expert like Epstein or Bostwick? Do you know that Epstein's work has shown a small percentage of men whose biopsy results indicate prostate cancer really don't have cancer at all?

3. Have you talked with a doctor/program who is experienced in working with AS patients? Have you fully considered AS and the possibility of managing your disease as a chronic condition rather than seeking immediate radical treatment?

4. Even if you have a verified G6 and decide to seek treatment, have you properly examined all of the options so that you can make an educated decision? Have you talked with doctors who specialize in SBRT, LDR Brachy and HDR Brachy? Do you know that those options will likely cure your cancer with equal efficacy as surgery but with lower likelihood of incontinence or ED?

Just hoping you will make darn sure of yourself before you pull the trigger...you get one chance to do this right the first time.

Jim

The beauty of a low risk diagnosis is that you have plenty of time to make a very thorough analysis of all the options. You can take months to make the decision to treat...if ever...... given G6.

You appear to me to be an example of a man with curable cancer that does not need to be cured. If you are a true G6 it will not harm you.

By getting another read of the slides and pursuing AS you buy the time to determine whether the cancer will have the potential to do harm or stay indolent indefinitely. Thus you don't have to confront the side effects of treatment unless it becomes obvious that treatment is needed. In your shoes I would take a pause and do more studying.

Why not also speak to a few radiation oncologists and learn from experts about mono therapy HDR brachytherapy, LDR brachytherapy and SBRT/Cyberknife? Just as effective as surgery without the severity of side effects. What's a couple more visits to learn of all the options?

Unfortunately we know too many men that cut out non-harmful cancer only to live that rest of their lives with incontinence and/or ED when they had better options available. You appear to be the very definition of overtreatment that is to be avoided.

The only thing I would add is after I spoke with a truely professional surgeon at the top of his game, I was sold, but since I promised myself I would talk to all option providers before making my decision, I went to see the OTHER guy. And boy am I glad I did. After getting all his information and treatment suggestions, and then comparing notes, I strayed away from RP, and couldn't be more confident in my choice.
I'll leave it at that. I'm sure you will make the perfect personal choice.

Cheers

Newt