Questions for an RO visit

I have a first appointment with Dr Zelefsky at MSKCC on Thursday. My goals are 1. To hear his opinion on my situation in general, 2. To ask at what point would he recommend I get treated. 3. Would he recommend HT with SRT in my case.

I had not even thought about HT being added, but last night I went to the nomograms and when I added HT the 6 year recurrence free odds went from the 53% to 74%, which surprised me. I always thought HT was added in cases of adverse pathology.

So question: in addition to the above, what other questions should I think about asking at an initial RO visit?
I'm guessing I don't need to ask how many men he's treated and basic stuff like that with a guy like Zelefsky. With a place like MSKCC should I be asking what kind of machines they use? What else? Not sure if I need to get into the weeds this early in the game,,wit PSA at .033.

I should probably know the answers to my questions after being here for so long, but I didn't think I'd ever be in this position (like most guys with good pathology, I guess)

My guess is he'll probably want to monitor it for quite a while before deciding to see if a pattern emerges. So this is really just a meet-and-greet. There's no one I can think of who is better to be enlisted on your case. I hope you can take some comfort in the fact that you're placing yourself in the best of hands. If you eventually need SRT, he'll tell you. And if you don't need SRT, he'll tell you that too.

There are some questions "for the newly diagnosed." You're right that there are some questions you won't have to ask, so adapt freely. I'll paste them here. :

Questions for a Salvage Radiation Interview.

1. How many patients have you treated with adjuvant/salvage radiation?
2. How has your practice of salvage treatment changed, if at all?
3. What is the probability that I need salvage treatment? Do you calculate that from a nomogram?
4. Do you think I should get a Decipher test to find my probability of metastasis in the next 5/10years? Do you know if my insurance covers it? What do you think about their PORTOS score?
5. How large a dose do you propose for the prostate bed? (should be near 70 Gy)
6. Do I need pre-treatment, concurrent or adjuvant ADT?
a. Why? 
b. What's the evidence that it's useful?
c. For how long?
7. 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?
8. What do you think of doing this in fewer treatments (hypofractionation)?
9. What kind of machine do you use? (e.g., RapidArc, Tomotherapy, Vero, etc.) Why do you prefer that one?
10. What is the actual treatment time for each treatment? (faster is generally better)
11. What kind of image guidance do you propose? fiducials in the prostate bed? Using the fixed bones only? Soft tissue?
12. How will inter- and intra-fractional motion be compensated for?
13. What measures do you propose to spare the bladder and rectum?​ (ask about treatment margins and dose constraints)
14. ​What side effects can I reasonably expect, and how do we handle them?​(discuss in detail!)
15. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?
16. How will we monitor my progress afterwards, both oncological and quality of life?
17. What's the best way for us to communicate if I have a question or issue?

TA, thanks for the comprehensive list, exactly what I was looking for. I'll edit it down to what is important to me.

Fair wind, I'd bring you along if I could. Lol. Actually, if I could, I'd prefer you go in my place, and report back to me after the meeting.
😫

Pratoman said...
Just as an aside, I've been pretty much under control about this up until the last 2 days. As the appointment gets closer, and the reality that I may actually need SRT becomes, we'll, more real, I find myself getting a little bit off the walls. Trying to keep it under control.

My experience....not necessary to practice...in your case Pratoman....

You have choices. You do not have to have SRT. That is a choice on your end. Is it a medical necessity? Do you *want* it? Ask yourself this question .... and it's answer should calm you....(that's my hope, not lobbying...at all....for one course of action over another....we all have feelings about what course of action to take....but I know...when I feel I have no choice in something....when the reality is, I do...that...in and of itself...produces anxiety...because I am not looking at reality.


I did notice, in TA's excellent and informed list of questions....one that was left out....that may do you some good....to ask...

"What happens, in your opinion Dr. Zelefsky, if I do nothing?" "Have you seen men in my situation that refused SRT?" "What was their outcomes?" "QOL?"

These are valid medical questions for any patient, in any situation. (Is it irresponsible *to* ask them?)

These words are not meant as a *knock* on standard of care....nor....SRT.

They can serve...to give one ... space...and freedom. As just another option to consider.


"15. What probability of a cure can I reasonably expect, given my stats? Is there a nomogram you use to come up with that?"

15. B. "Do those nomograms match what you see you've seen in your own personal experience and career as an RO?"

15. C. "Are there nomograms for those who have forgone SRT?"


...and no...this is not a post designed to help people to not fight their cancer. Or to help or persuade people to not do what is medically in the best interest of what science says is the best option for "beating cancer".


There's just more than one way to skin a cat. It's my view (however wrong)...that all options should be asked about. And *everything* should, at least, be brought to the table for review. (however little time it takes to dispose of it).

good luck man....

Prato I'm gonna be facing those same questions later this month let me know if you find any volunteers to stand in for you! I think I will also take some of TA questions with me

It, thanks. Beliege it or not, I actually thought about what might happen, what would I expect, if I didn't do SRT. How long before I'd need to consider HT/Chemo. I don't think I'd go that route, I want whatever I can get to prolong life, without screwing up my QOL. But I've thought about it,

I know...Prato...being who I am and my esoteric bent{operative word}...I am concerned about self fulfilled prophecy...which at this time is gobbling up and well...let me just say...the 4th of July...it really is not the same...we all sense it...and for diametrically opposed and ironically valid reasons...not flesh and blood but.....a perfect storm...and a storm indeed...Sorry...we are all censured by something...nes c'est pas? " let it be...mother mary...let it be"

You will be fine...because you are fine..in the ways that matter...nothing else matters...

I recently saw this long video - thought the last part of it is interesting for folks even at an earlier stage - per this video there is increasing evidence of benefits of chemo earlier than later - I guess no one know how much earlier.

Would it be a relevant topic to broach to throw the kitchen sink ?

http://www.compassionateoncology.org/video-lectures/chemotherapy-for-prostate-cancer.php

Post Edited (ddyss) : 7/4/2017 12:43:16 PM (GMT-6)

You should ask how long can you expect to glow in the dark and how long before the x-ray vision kicks in.

Andrew

GOOD LUCK TODAY PRATO!!!!