Meeting with the radiology oncologist tomorrow

I have decided that I want some form of RT to combat my PCa. RP is pretty much out of the question for a variety of reasons.

So I am very swayed in the direction of SBRT aka CyberKnife and would like to know some important questions I should be asking the professionals during my appointment?

I met with my urologist yesterday and am concerned that he could not tell me what stage I am in. DRE indicates a lump and biopsy shows that it is confined in one lobe> he is guessing a t2 but maybe a t3.

Should any kinds of tests be given to determine the stage before radiation? Is it even important?

Any and all suggestions are appreciated.

Thanks
Alan

No further tests are necessary. They will do an MRI and CT scan after the fiducials are in place in order to do the radiation planning. The radiation conforms to the shape of the prostate, including exterior lumps, if any.

Below are my questions for SBRT radiation oncologists. Their purpose is not just to evaluate the doctor, but to help the patient understand the therapy, and spur discussion with the doctor.

SBRT RO questions

1. How many have you performed?
2. How has your practice of SBRT changed over the years?
3. What is your 5-yr freedom from recurrence rate for patients at my risk level? What proportion of your recurrences were local-only?
4. What kind of urinary and rectal reactions can I expect? How long can I expect them to last? What medications or interventions do you typically give for that? Should I expect those symptoms to recur later?
5. What is your rate of serious (Grade 3) adverse events? Do you see urinary strictures? Urinary retention requiring catheterization? Fistulas? Rectal bleeding requiring argon plasma or other interventions?
6. What is the margin you will treat around the prostate? Is it less on the rectal side?
7. What is the prescribed dose to the planned target volume?
8. Do you work off a fused MRI/CT scan?
9. What machine do you use (e.g., VMAT, CyberKnife, step-and-shoot, Tomotherapy, etc.)?
• If CyberKnife: Do you use the IRIS or a new multileaf collimator?
• Do you set a limit on “hot spots”?
10. Do you use fiducials or Calypso transponders? Do you do transperineal placement of them?
o What system do you use for inter-fractional tracking?
o What system do you use for intra-fractional tracking?
11. In my treatment plan, what do you identify as “organs at risk” and what dose constraints do you put on them?
o What dose will my penile bulb receive?
12. How long does each treatment take?
13. How will I be immobilized during each treatment?
14. Are there any bowel prep or dietary requirements?
15. Should I avoid taking antioxidant supplements during treatment?
16. In your practice, among men who were fully potent, what percent remained fully potent 3-5 years later?
o Have any men retained some ability to produce semen?
o What is your opinion of taking Viagra preventatively?
17. Do you monitor side effects with the EPIC questionnaire?
o In your practice, what percent of men experience acute urinary side effects?
o In your practice, what percent of men experience acute rectal side effects?
o In your practice, what percent of men experience late term urinary side effects?
o In your practice, what percent of men experience late term rectal side effects?
18. What kind of PSA pattern should I expect following treatment?
19. What is the median PSA nadir you are seeing in your practice, and how long does it take to reach that, on the average?
20. In your practice, what percent of men experience biochemical recurrence?
o What % of those have been local?
o If there should be a biochemical (PSA) recurrence, what would the next steps be?
o Have you ever used SBRT, brachy, or cryo for salvage after a local SBRT failure, and was that focal or whole gland?
21. Are you open to email communications between us?

Those questions are specifically for SBRT - you might have to modify it for IMRT (which, IMHO, is quickly becoming obsolete). I would have a different set of questions for HDR brachy, LDR brachy or combo therapies.

In your case, your stage is determined by your DRE. If they felt nothing, you are stage T1c, just as over 90% of newly diagnosed men are. Stage is much more important for surgery because they can only remove what's inside of the prostate capsule (stage T2). Stage T3 and even stage T4 can be treated within the radiation field, so it doesn't matter as much (although success rates are of course better for lower stage (i.e., less likely to have metastasized)).

I've never known anyone to record a meeting and then listen to it afterwards. I recommend you print your questions out with space underneath each one to write down the answers as you hear them. Better still, bring someone with you to write down the answers. And debrief with that person immediately afterwards. Then, follow up the meeting with a brief thank you note, briefly summarizing what was said and the next steps.

lifeguyd-

You keep using the word "we." "we give too much information too early...""how do we impart usable knowledge..." "how do we break this down to a usable plan for new people..." "most new people would not know where to start" "...to "every day" prostate cancer posters""we need to find a way to make it more understandable""we need to find simple ways to explain..."

I don't mean this as an insult at all, but you are not really speaking for us and certainly not for "most new people," nor for "every day" people or "newbies," as you claim to. You have no way of knowing what others understand or don't understand. You were on firmer ground when you wrote, "I know that I do not have the experience to understand all that they are saying about new treatments and drugs."

That statement about yourself gets to the heart of the matter. The answer is quite simple and easy: if you don't understand something that I or anyone else posts, you should ask questions. I believe I do a pretty good job translating to English from Medicalese, but it's easy to get caught up in jargon and commonly used abbreviations. I and others are very good about responding to questions when asked. Also, the two stickies up front were wisely made as stickies because some basic background knowledge and abbreviations are necessary for everyone who has to deal with prostate cancer.

So, I hope in the future, when you don't understand something I or anyone else posts, and you think it's important that you do understand, please follow up with questions. That's what a forum excels at.

So what is your question? (and btw, I agree with your wife that decisions made a decade ago based on whatever you knew back then ought not cause any feeling of regret now. You did the best you could based on what you knew then and who you were then.)

I wanted to pop in real quick and thank everyone for taking time out of their lives to help by providing information to Alan (I usually call him dad).

TALL AL,

Keep up the good work! You are amazing! I have been following Alan's threads and it seems that you put a lot of personal time into addressing peoples questions.

As for the discussion on giving too much information... I believe there is no such thing. That is one of the primary reasons for coming here as I see it, the other being support for and from the community.

As a family member of Alan every comment has been useful as a learning tool, and a jumping off spot for further research.

Thanks again,
Trentazoid

Post Edited (Alan's Son) : 9/14/2016 11:45:10 AM (GMT-6)

I deleted my post from last night. I did not do a good job of explaining myself. Thank you to everyone who helps make this forum so valuable.

Allan,

Sorry that you are here but there is lot of info on this site and way more knowledgeable people than I. I started Lupron a month ago and should start RA in about a month. RP, I didn't believe was an option for me either. I am high risk and chose SBRT because the triple play was not available for me. But the triple play seems to be the more proven treatment for high risk which it doesn't sound you are. Have you considered that treatment? Not sure if is appropriate for you though.

Good luck moving forward,

Rosewood

Nomar-

Actually, most smart phones allow recording, so if you have one, that's all you'd need. Here's my question, though... If you recorded the meeting with, say, Dr. King, did you ever sit down and actually listen to it after the meeting?

I've found that people are more apt to read notes than sit down and listen to the entire recording. But, whatever works!

BTW and OT - I remember a movie (but I can't recall which one) where college students set up cassette recorders to record their classroom lectures, and then left the room. In response, the professor played his entire class lecture from his cassette recorder and left the room too. In the end, there was no one in the room - just the cassette recorders.

- Allen

Although I didn't use this, I would be curious about using a dictation app for a smartphone. I know people that use them for work-related reasons and they seem to be reasonably happy with them, although I suspect they would have a difficult time with medical-related terminology.

I did record one of my consultations on my iPhone and I found it helpful, but trying to sort through a 1-hour recording to find specific sections is very difficult so a transcript would sure have been helpful.

Thank you to all those who replied. And a special thank you to Alan's 3rd son who is taking an interest in Dad's
care. I love you son.

*Paxton I look forward to reading your posts and hope you can find a RO that you are happy with. Your Gleason score is better than mine. It appears that you are a good candidate for CyberKnife

*0311 Congratulations on the downgrade of your Gleason score. I did have my slides sent to Bostwick and am hoping to have the results soon.

As a side note, I had my first visit to a RO today. I plan on starting a new thread this evening describing it.
To all that may be interested, it will be titled "No CyberKnife from this RO"


Alan