1st visit w/SBRT Dr.

Hello All, l visited with Cyberknife Center of Chicago,Elmhurst,IL.I had consultation with Dr.Andy Su.Medical Director.Under graduate degree:M.I.T.-- Medical degree: University of Chicago--Completed radiation oncology training at the University of Chicago Medical Center--Additional training in brachytherapy at the Seattle Prostate Instute and at the Texas Cancer Center.And there is more if you Google.

Very smart guy.Wife was with me taking notes.He does about 30 prostate SBRT a year.They use the Iris system.They use fiducials,spare the penile bulb.Grade 3 (adverse affects) about 1-2%.He was exlaining a lot so my wife and me didnt take all of the notes we wanted.Im still going to call back his office and ask for personal references.Took all the time we needed.Also,instead of 5 straight days of radiation,he does 2 days in a row the first week,2 days in a row the second week,and one last treatment the 3rd week.Is this something new?

FYI.-I brought to Dr.Su the questions " His Tallness " aka,Tall Allen,had whipped up for SBRT DRs. and the others.That info is now a STICKY.Dr.Su answered all 20+ guestions and it was a good experience.The Dr. seemed I think a little impressed with that info.Such a coincedence that I just copied those questions the other day and I had all that to discuss with the Dr. Thank You Tall Allen,

Good for you to get the first one under your belt. Thanks for reporting in!

So O3,

He was able to answer all of the questions , just bing, bing, bing right off the top of his head as you sat there? 5 year freedom from recurrence, what percent of his patients had acute and late term urinary and rectal side effects? %BCR? what type of fractional tracking...along with the more general questions.

Sounds like he had a good attitude towards the whole thing and wasn't dismissive like some docs can be. You and your wife will more know about PCa than you want to before this is over..LOL Maybe you already do ? I know I'm getting there.

Good point,so here,this is what I forgot to tell all SBRT guys.This RO said they give the radiation (SBRT) in 3 sessions.Thats 2 times in 1 week,2 times the second week,and 1 time the last week.He says it helps the side effects on the urinary side as well as the rectal side.He says studies showed this works better.Does it make any difference ? Just a little more time traveling.Studies? Anyone hear about this approach?

0311,

I know how that info overload can be, even for me now when I go out on Dr visits. One thing I always do is de-brief immediately afterwards. You and your wife can go for a cup of coffee somewhere close, and go over the answers you both heard, one-by-one, and any other info that was new to you. I think it's good to do that while it's still fresh and detailed in short-term memory. Sometimes you may find that she understood one thing and you understood something totally different. That's OK - just more questions for later.

I also think it's a good idea to send a "thank you" email to the doctor, thanking him for his time and enumerating the nice things you just said about him in this thread. It never hurts to give an honest well-deserved compliment. You can also briefly summarize what the important things were that you got out of the conversation, and take the opportunity to ask anything you feel uncertain about.

If it helps, record the entire conversation next time. Most smartphones have a feature or an app that allows you to do that. Most doctors, in my experience don't mind, as long as you politely ask first. Honestly, I've only once known a patient who went back over his recording - but he was an OCD sort who actually transcribed the entire conversation. But if it adds to your confidence, it may be a good idea.

You'll notice that there are no questions on my list asking a doctor to have an opinion about anything outside of his own specialty. That only causes confusion and spreads misinformation much of the time. I also never ask which of several therapies he'd recommend. And I especially don't ask which he'd recommend to his own father - remember Oedipus! If you should ask him anything like that (I know it's only natural to), a doctor well-trained in "shared decision making" will wisely turn the question back at you and ask something like: which do you feel is right for you and why? and what further information can I provide you with to help you make your decision? This is a sea change in doctor/patient interactions compared to the 20th century, and there are still doctors out there who prefer the paternalistic model where they just tell you what to do, sweet and simple. I think you'll find that you'll feel more comfortable about the decision you make using this kind of doctor/patient interaction even though (or because!) it puts more responsibility on your shoulders.

- Allen

0311,

How many doctors in what disciplines are you fixin' to talk to?

0311,
I think it's a fine idea to ask for referrals. The doctors are allowed to give you names if the patient gives permission. Of course the ones whom he asks for permission are likely to be the ones who had the best outcomes. My RO has had prospective patients call me a few times. While I had a very good experience with SBRT, I nevertheless encourage those callers to explore all alternatives, and especially active surveillance, if it seems relevant. But I think most guys you speak to will be "boosters."

BTW, as you go through these interviews, there is an interesting psychological effect you should be aware of called "the availability heuristic." It's a very fancy name for the simple fact that the last thing you hear tends to dominate the other things you've heard before. We all do it. To prevent that from affecting your decision, it's a good idea to put it away for a little while. Maybe take a little trip where you try not to think about it or get immersed in a good book. Then come back to it a week or two later, go through your notes, discuss all of them with your wife or whomever, raise any remaining questions, and then decide.

- Allen

Every doctor has his biases based on his own experience. Zelefsky is a star of brachy, and I think it's his first "go to" therapy. He also tends to favor combo therapies. MSKCC came late to the party of SBRT and they are still feeling their way around it. They don't do all that much HDR. Samadi - well, I won't comment. Klotz (is your friend Canadian?) is the father of AS, so of course he's learned to believe in it and advocate for it - he's also studied it with more patients and for longer than anyone. To me, their personality, whether salesman or nerd, is immaterial. I'm interviewing them to be my doctor, not my life partner - it's their skill, knowledge and experience that's really important.

There's no rule as to how many doctors to talk to. The more one talks to, the better one understands the various biases and often legitimate differences of opinion. On the other hand, one may have fewer choices based on geography or health insurance, and one can reach burnout after a while. I talked to 6, including 3 urologists.

- Allen

I did my 5 SBRT fractions in conjunction with 3 overlapping Provenge cycles/

My original schedule was

20141006 Provenge infusion #2 Marina del Rey CA
20141006 SBRT #1 @ UCLA Santa Monica 1223 16th St, Santa Monica CA 90404
20141008 SBRT #2 @ UCLA Santa Monica 1223 16th St, Santa Monica CA 90404
20141010 SBRT #3 @ UCLA Santa Monica 1223 16th St, Santa Monica CA 90404
20141013 SBRT #4 @ UCLA Santa Monica 1223 16th St, Santa Monica CA 90404
20141015 SBRT #5 @ UCLA Santa Monica 1223 16th St, Santa Monica CA 90404
20141017 Provenge cell collection #3 Marina del Rey CA

However there was a factory error on Provenge cycle #2 that had to be redone.

So my final SBRT ended up being 5 fractions spread out between Oct 6 and Oct 20 and my final Provenge November 3.

I can't recall exactly (could look it up) but I think it ended up being something like Mon -Fri- Mon- Fri - Mon which Dr. Chris King had no
issues modifying it