SBRT,HDB,LDB ?????

What happens on a sheep farm? The regular animal agriculture stuff, feeding, health checks, treatments, cleaning , breeding on a 24/7 basis..but that's animal ag for everyone. For sheep we raise them for meat and wool,so harvesting of those once or twice per year and the concomitant marketing. Crop production in the spring summer and fall. I am also a professional shearer so spend a fair amount of time traveling around shearing for other people. All in all pretty physical with a lot of lifting, carrying etc of course shearing presents its' own physical challenges. All of this make almost any PCa treatment a problem...anything imparting incontinence is particularly troubling.but fatigue and weakness run a close second. Not being able to lift anything over 5 lbs for 8 weeks is almost impossible. Worrying about "the little man", "willy", "my little soldier" or whatever you guys call "it" is pretty far down there.
Sheep can act a little strange..I always say their behavior is like the Borg was on Star Trek...as individuals they are pretty inept but they function very well as a collective.

Jim,
Those were my doctor questions for those 3 therapies. I have more for specialists of other therapies if you're interested in stickyizing those too. You mods can discuss and decide. I don't have one for brachy boost therapy, but I can probably whip one up fairly quickly. In a few of the questions, I did add what I consider to be good answers, although the doctor may reasonably differ - it's getting into the discussion that's really important.

Questions for surgeons

1. How many of that technique (whether robotic, laparoscopic or open) have you performed? (1000+ would be a good answer)
2. In the last year, what was your positive surgical margin rate? (Should be close to 10% in total, less among men with stage pT2)
3. What is your "trifecta" rate? (tricky because you don't want cherry-picked patients)
4. What is your estimate of my risk for lasting incontinence; i.e., a pad or more after a year?
5. What about lasting stress incontinence? climacturia? penile shrinkage? inguinal hernia?
6. What kind of anastomosis technique do you use? (total - not just anterior)
7. Will the bladder neck be spared? How will you maximize the urethral sparing?
8. Will you take frozen sections and have a pathologist standing by to determine margins and how much of neurovascular bundles can be spared?
9. What measures will you take to assure the integrity of the neurovascular bundles?
10. What kind of penile rehab do you suggest?
11. 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?
12. 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.


Questions for a Salvage Radiation Interview.

1. What is the probability that I need salvage treatment? Do you calculate that from a nomogram?
2. Do you think I should get a Decipher test to find my probability of metastasis in the next 5 years? Do you know if my insurance covers it?
3. How large a dose do you propose for the prostate bed? (should be near 70 Gy)
4. Do I need concurrent or adjuvant ADT?
a. Why?
b. What's the evidence that it's useful?
5. How do you decide whether to treat the pelvic lymph nodes?
a. If so, at what dose? (50 Gy)
b. How do you plan to prevent bowel toxicity?
c. How will you account for the separate movement of that area and the prostate bed?
6. What do you think of doing this in fewer treatments (hypofractionation)?
7. What kind of machine do you use? (e.g., RapidArc, Tomotherapy, Vero, etc.) Why do you prefer that one?
8. What is the actual treatment time for each treatment? (faster is better)
9. What kind of image guidance do you propose? fiducials in the prostate bed? Using the fixed bones only?
10. How will inter- and intra-fractional motion be compensated for?
11. What measures do you propose to spare the bladder and rectum?
12. What side effects can I reasonably expect?
13. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?
14. How will we monitor my progress afterwards, both oncological and quality of life?
15. What's the best way for us to communicate if I have a question or issue?


Questions for yourself

• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I prepared to undergo 8 weeks of radiation (5 weeks with combo therapy)?
• Am I prepared to undergo surgery and its recovery?

0311,

I actually do think it's a good idea to send questions in advance, although I've never done it. I'm not a fan of surprises, for either the doctor or the patient, so I think it's a courtesy to let him know in advance what your questions are. I have sent doctors research studies that I've told them I'd like to discuss at our next meeting. I think that's a lot better than springing it on him during a rushed interview.

I think you are fully capable of understanding the answers, but keep in mind that the purpose is for both you to better understand the process. For example, you may not have known that the radiation oncologist can set penile dose constraints and that may be important in limiting erectile dysfunction from radiation. Just by asking the question, you've learned that it's a "thing" and the radiation oncologist has learned that that "thing" is important to you. The answer is actually controversial, but most believe it should be kept under 50 Gy (for IMRT). For SBRT, one RO I met with set the limit at 25 Gy (over less than a volume of 3 cc) - SBRT doses are typically about half or less of equivalent IMRT doses. Now your RO may have a good reason for believing it ought to be different - just the fact that he's thought it through and is able to verbalize his reasoning should give you some peace of mind. There aren't necessarily right answers, but there should be well-considered answers.

I think if you approach him with honesty and humility, you're likely to get the most out of the interview. You can say that a friend helped you with the questions. You can also say so if you don't understand the answer. Sometimes you'll want to just write down what he says, and digest it later - remember this is a stressful experience for you and there will be a lot of information thrown at you. It's hard to maintain full attention for that long, and your mental acuity may not be at its peak. Be forgiving of yourself - just write it down or record it, and go over it later when you're more relaxed. Or ask about it later in HW if something sounds not quite right - I'm not saying we have better answers, but maybe we can explain it to your satisfaction.

- Allen

Armed with knowledge from this forum, I was often "accused" of being a medical professional during our interview visits. LOL

It may have been coincidence, but the only docs we seriously considered were the ones who were positively responsive to our knowledge base, as limited as it was. They seemed to respect that we had made the effort to educate ourselves and they really took the time to answer questions and explain things.

They say they use Varian Rapidarc for IMRT, salvage focal, etc. and Vero for SBRT thinking that the tracking the Vero is capable of is superior for SBRT ..which they use for more than prostate cancer ,of course. They refer to Vero as Vero SBRT..I do believe Vero was developed for SBRT.

The only thing at upstate is they have only had it for 2 maybe 3 years so I don't know how many they have done. I haven't a clue what the learning curve might be . I think if I get there and I like what I hear I'll probably take a chance.

Inquis, I haven't a clue, really. As far as the machine goes I would assume (probably making an ass out of U and me , as they say,) it , once available is reliable. Number of procedures..probably, but what number? Some guys catch on sooner than others ..some never do regardless of number procedures..some are lucky...but then the more you practice, the luckier you get.
I guess I would balk at 20 or something..but then if they guy impressed me and had the "right" answers I might give it a shot if he had done less than 500..totally arbitrary numbers. My circumstances are such that I can't really go too far away..unless of course I sell the sheep, sell the farm, stop shearing ..then..well, hell , I might as well kill myself. LOL
Of course some of this stuff is more art than science, meaning there are no set "ways" to do it..so who the heck knows.
So basically..after all that...Beats me. :)
Regarding the Vero and SBRT they docI talked to referred to Vero SBRT..so I assumed ..there I go again that it is used.
PS To be totally honest, I quit assuming anything about anything about 30 years ago!

Wow. listen to this. I just got off this forum and went to check email and I received an email from the Upstate Prostate Program Chairman of Radiation Oncology(different from the Urology Dept Chari that sent me 1st email)

Dr. Jeff Bogart said...
Might be best if we could talk briefly to discuss.
I can call you later tonight or sometime tomorrow if you'd like.

Hmm...Sounds like they are very open.

I think seed monotherapy would be a great choice, and Zelefsky is a rock star. Among the primary radiation treatments, SBRT, HDR brachy and LDR brachy are all great choices if done by experienced ROs. If you're going to NYC, you may also want to meet with Alan Katz in Flushing - he's among the most experienced SBRT docs, and has his own unique perspective. There is no "best" imho - you have to choose which suits you best.

Regarding insurance for SBRT, my insurance turned it down as being experimental for Gleason 7. It permitted the procedure for Gleason 6. I argued that Gleason 7 has a wide range of low to high Gleason 7 and, using their four conditions, my Gleason 7 was low. They agreed and approved the procedure for my low GL7.

Please note that this decision on SBRT was available in the back office, so to speak, and not in any certificate of coverage. I had to get pre approval. At that point it was denied. The front office (customer service) did not transmit any information to me regarding Cyberknife as if they'd never heard of it!

Btw, I'm in the middle of treatment (session 3 tomorrow). Side effects are low.

Mark