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Posted 1/30/2011 6:40 PM (GMT 0)
I'm getting ready to meet with the first of two surgeons in about 24 hours (2:00 on the 31st). I'll also be meeting with at least one radiation oncologist at the University of Michigan (maybe more). Below is my list of questions. Anybody have any additional questions they wished they had asked?

Please understand I haven't decided yet to go with surgery (although I'm leaning that way based on medical advice so far) and I'm not looking for a debate on the pros and cons of surgery.

My biggest concerns now are about:
My Gleason 7 (3+4), which is obviously scarier than a 6
The fact that one of my cores was 100%
The fact that PNI was seen in that core

The outcomes advertised on the Vattikuti Institute web page are encouraging but I don't know if they would really apply to me.

So here goes:

Questions for Hans Stricker

Vattikuti institute outcomes description at: http://www.henryford.com/body.cfm?id=46058
Published study from 2007 at: http://onlinelibrary.wiley.com/doi/10.1002/cncr.23027/full

How long have you been doing robotic prostatectomies?
Were you a part of the report published in Cancer in 2007?
How many have you performed solo?
Do I look like a good candidate? (Why or why not?)
What does that 100% core suggest to you? How many of those have you seen? What impact does that appear to have on outcomes?
What does the PNI suggest to you? How many of those have you seen? What impact does it appear to have on outcomes?
Is the fact that three of the positive cores are from the apex a cause for concern? Can you still get negative margins?
Am I a candidate for nerve-sparing surgery? What would that do to my odds of negative margins?
Am I a candidate for the “Veil of Aphrodite” nerve sparing procedure? What would that do to my odds of negative margins?
What do you guess are the odds of a detectable PSA after the surgery?
What do you guess are the odds of a rising PSA after the surgery?
What are the odds I would need hormone therapy?
What are the odds I would need followup radiation?
Your website cites 85% “strong-enough” erections after surgery (with Veil of Aphrodite). How do my individual odds compare?
Your website cites 95% urinary continence after one year. How do my individual odds compare?
Am I a candidate for the catheter-free tube option? What risks are associated with that?
Would I need additional tests before surgery?
Would you recommend having the surgery here rather than at the University of Michigan with Dr. Hollenbeck? (Why or why not?)
If I decided to have surgery and have it here, how soon could I get scheduled?
Posted 1/30/2011 7:02 PM (GMT 0)
Your list of questions seems pretty complete, but I am sure that some of my more learned brothers will be along to fill in the blanks.

I have personal experience with Vattikuti though. Dr. Menon preformed my surgery in SEP 09. While I may not have had the best of results with the cancer to date, I am quite sure it is not because of anything that he did or didn't do. It is just my cancer and my circumstances.

The entire process at Vattikuti was extremely professional and well thought out. I am 16 months out from surgery and still receive follow up phone calls and emails to monitor my situation and progress. I flew from Orlando to Detroit because I wanted Menon as my surgeon. From day of arrival to back home in Orlando it was only 8 days.

I was up and walking 2-4 miles per day beginning the day after surgery. His use of the Supra Pubic catheter, I feel, relieved me of many of the after surgery complaints you see from other surgery patients. The ability to train the bladder and test the old plumbing functioning before the cath is removed is I believe a great recovery tool.

I was fully continent from the day they took the cath out. I am experiencing some slight issues today but that is most likely a result of the Salvage Radiation Treatment that I have been through.

In the ED department, I am not quite there yet but things are really beginning to improve. I may have not been as diligent in my rehab process as I should have and that is why the delay. One of the reasons is that I experience a lot of muscle pain with the use of the various pills and as a result just don't use them.

There is another member here, "Compiler", who also was treated at Vattikuti. I am sure he will be along soon and can chime in .

My email is active, feel free to shot me a line if you have any other questions about Dr. Menon and the Institute.

Sonny
Posted 1/30/2011 7:22 PM (GMT 0)
An elaboration on one question comes to mind from postings on another thread today:

"Your website cites 95% urinary continence after one year. How do my individual odds compare?"

I would add:

How do you define "urinary continence"? One pad a day, "Leak-free / Pad-Free", some other criteria?

Posted 1/30/2011 7:30 PM (GMT 0)
Thanks for the insight Sonny! I may have more specific questions about Vattikuti. I'm currently a part of the U of Michigan health system, so the path of least resistance is just to let them schedule me from one doc to the next within that system. And that might be the right way to go. U of M is top-notch in lots of things. I've heard so many good things about Henry Ford, though, and you're right they are very professional. So far it's been more of a high-end retail experience than the more institutional approach of a university hospital.

142: Great addition. I know from experience in other specialties that surgeons can be very focused on their stats and I have to make sure I we're talking about the same things.
Posted 1/30/2011 7:41 PM (GMT 0)
HI

I found a list of questions to ask "when considering surgery", "when considering radiation therapy" and "when considering active surveillance" These were on on a page found on the Prostate Cancer Foundation website. I will try to relocate and add link at bottom of message. I printed this list and took it with me, along with several other questions I had come up with on my own from research and from people on this site. I hope the questions will lead you to other questions and help you make the best decision for you and your very specific situation.

Best of luck
Susan


http://www.pcf.org/site/c.leJRIROrEpH/b.5835175/k.B015/Questions_to_Ask.htm

I am no good at pasting links....sorry....you will have to cut and paste. Or just go to the prostate cancer foundation website (www.pcf.org) and look for newly diagnosed and then questions to ask. Hope it helps

Someone may be good enough to attach the link!!!!
Posted 1/30/2011 7:51 PM (GMT 0)
Just what I needed, Susan. I'll go over that list and add some things to mine!

(BTW cutting and pasting the link worked fine)
Posted 1/30/2011 8:00 PM (GMT 0)
Isn't Stricker at Ford?

You might want to consider Menon. Like Sonny, I was very pleased with them. In a nutshell, they had their act together and the supra-pubic cath worked great. But, also like Sonny, my stats did not come out well. I doubt if its their fault.

I did consult at Umich. I met with David (can't remember his last name), one of the top surgeons around and I was pleased with him. I also met with Heemstra, a radiation expert, and I liked him, too. Both were very professional and answered all my questions. The surgeon was a bit on the quiet side. He answered all my question very briefly/succinctly but didn't seem to say much beyond that. I think Ford just had better marketing. I met at length with the surgeon and his team, as well as a dietician and also their insurance experts. The surroundings were plush and they even fed us. But, besides the clever marketing, they exuded confidence and this continued right through the surgery and aftercare.

Mel

Posted 1/30/2011 8:10 PM (GMT 0)
Yes, Stricker is at Henry Ford. I know people who work in oncology at Henry Ford, and they told me Dr. Menon will be traveling for a while. Hans Stricker came highly recommended by those who work with him. Dr. Peabody at Henry Ford was also recommended. I happened to ask about Dr. Stricker first and got the appointment with him.

Dr. Stricker does appear from his picture to be my age or a little younger. I prefer some grey hair on a surgeon! Hopefully he has just aged well.

Dr. Wood at U of M has been recommended but he wasn't offered to me. I was scheduled with Dr. Hollenbeck. My totally unfair concern (I haven't met with anyone yet!) was that the docs at U of M appear to do a wider variety of things in addition to prostatectomies. The Vattikuti surgeons seem to be all about prostatectomies. If I decide on a prostatectomy then I want someone who does them every day. We'll see what U of M has to say about that.
Posted 1/30/2011 8:28 PM (GMT 0)
That's right, it was David Wood. I thought he only did prostates and maybe kidney stuff.

I've heard good things about Stricker and Peabody.

Let us know what you decide. Good luck with your appointments. Incidentally, although I had my surgery with Ford, Umich has not held that against me. I've consulted with Dr. Hussein, one of their eminent medical oncologists specializing in PC.

You should interview all of the folks you mentioned and then I guess go with your gut/impressions.

Mel

Posted 1/31/2011 12:47 AM (GMT 0)
Just a note, you will probably not actually get to ask all your questions with a list that long, probably you will be interupted and the doc will try to put you at easy for having so many questions and get to the most important points. I know when I saw Dr. Menon I did not get hardly any of my questions being able to be asked let alone answered. He was very busy as LRRP was new then and people were getting appointments, booked.

 I do like Dr. Menon for being an honest guy, denied my surgery and he was totally correct in so doing, in my case.

(revised my questions I was suggesting and took them off here....might be T.M.I. to ask)

Post Edited (zufus) : 1/30/2011 6:42:34 PM (GMT-7)

Posted 1/31/2011 1:24 AM (GMT 0)
Zufus:

Actually, I found all of the doctors quite willing to spend as much time as needed in answering my own long list of questions.

Look, they want your business. It's big bucks so they will take their time.

Also, congratualtions for not using the word "righteous" in this post, although it fits when describing Dr. Menon

Mel

Posted 1/31/2011 1:39 AM (GMT 0)
I had no issues with getting all my questions answered - the docs spent enough time with me. My issue was not knowing enough about what to ask.

I regret most not have asked what "continent" meant early on.

In listening to the recordings (take a recorder, ask permission) I found that a lot of the questions were actually answered before they were asked.

I went in with a long printed list, the doc did not appear concerned or hurried. I'm sure whoever was after me was a bit late.

Posted 1/31/2011 1:53 AM (GMT 0)
Moredata,

What you can do now is come up with your own answers and what you would do if its in a certain range

For example for these

What would that do to my odds of negative margins?
What do you guess are the odds of a detectable PSA after the surgery?
What do you guess are the odds of a rising PSA after the surgery?
What are the odds I would need hormone therapy?
What are the odds I would need followup radiation?

What would you do if he answered in 1 in 275 to some, most or all of them

What would you do if he answered 1 in 195 million to some, most or all of them

people win Powerball right and thats 1 in 195 million. You could be in that 1 in 195 million, no-one knows

I would be very surprised if your Dr entertained even listening to all of these, honestly almost every single answer he gives you depends on many factors that are out of yours and his control


I asked every Dr I saw only 2 questions then sat back and wrote down notes of each ones very elaborate answers. You will get tons of good info when you ask a Dr how he would treat himself

1) If you were my age and had this exact same pathology result, what would you do and why ?

2) if what you propose did not work on you what would you do next to yourself ?

thats it, I asked 5 different Dr's some oncology, some radiation, some surgeons, and to my surprise they all said that they would have the treatment I had even though it was not what their specialty was
Posted 1/31/2011 7:34 PM (GMT 0)
Have you had any previous prostate surgery of any kind? Especially lazer turp surgery. If so it causes the prostate to become calcified with scar tissue and takes longer to remove as well as having the possibility of having anastamosis disruptions. I have and share this experience with you. It is imperative an experienced surgeon perform this surgery with the above complications. Best of luck with your decisions.
TTaylor
Posted 2/1/2011 3:20 AM (GMT 0)
I too used Dr. Menon, having abandoned the Hopkins option in my home town.  I echo the comments that he is highly skilled and compassionate.  I stayed in Detroit for 8 days and agree the suprapubic catheter was probably a good short term and long term benefit.  I get frequent emails from Henry Ford and my ED management (which is improving since surgery on 8/11/10) is great with freuqent calls to the compound pharmacy with different mixtures to help to improve my situation.  Granted, when the "rock star" does the surgery, he is difficult to speak with personally, but great professionals surround themselves with great people so you can count on a highly professional staff who communicate with each other via email.  Dr. Menon is aware of most that goes on with all of his patients and has a great system in place for patient care.  That being said, there are many "almost" equally skilled robotic surgeons on the East Coast and elsewhere.  I ultimately was diagnosed as T3a despite assurances from Hopkins that I had plenty of time and that 2 of 25 cores at G6 (5% in each) meant it was very early.  I had the "Super VIP" despite all of this, although the final path may have changed the approach.  Oh well.   As Dr. Menon confessed, I'm only a surgeon and have done the best I can.  Thank G-d we acted when we did."  Thus far, I am at ZERO (PSA) but have opted per the recommendation of Menon, Epstein, Walsh and others to avoid the ultrasensative PSA which seems to be the topic of conversation on this site with many undergoing radiation (SRT) with increases from .01 to .05.  There's alot more to this disease than the biopsy results or the surgeon.  You can only do the best you can do with the information you have.  You're in the right place but I must disagree that you have lots of time to make a decision.
Posted 2/1/2011 3:42 AM (GMT 0)
I wanted to know what portion of the surgery would be self performed and what (if any) would be completed by others.  You might also want to ask how many he does in a day.  I had one surgeon tell me he did 7 or 8 in a day.  While I'm sure he is experienced, I sure wouldn't want to be his last appointment of the day. 
Posted 2/1/2011 1:26 PM (GMT 0)
You should also ask whether and to what extent the seminal vesicles and lymph nodes will be evaluated by pathology intraoperatively, and issues that may present during surgery where they may elect not to preserve one or both nerve bundles. You should ask about the extent to which adjacent tissue will be removed and whether the doctor will search for lymph nodes during the surgery or whether he will simply presume they are contained within the tissue he removes. The more lymphs evaluated the better but sometimes there are very few if any in the tissue removed. Also, if he elects to perform the Super VIP, you should ask him what exactly he uses as factors for deciding during surgery he will or won't perform the super nerve sparring technique.
Posted 2/1/2011 5:23 PM (GMT 0)
Just a check-in on you. Did you have your appts? How did they go? Update, please! Keeping you in our thoughts!

Susan and Michael
Posted 2/6/2011 5:12 PM (GMT 0)
I'm a 50yo recently diagnosed with presumed T1c disease: PSA 3, Gleason 6 (3+3). Have decided on robotic prostatectomy. Deciding whom to see for surgery. After extensive review of info (including this site - very informative/candid: my thanks to all who post) am trying to decide between Wood and Menon. Each has an excellent reputation. I have no problem looking past the wrapping (Wood the academic vs. Menon the effective marketer). Am interested in experience and surgical expertise above all.

1. There is a fair amount of info on the site re: Dr. Menon - generaly that he is confident, experienced, and effective, with most happy with the alternative to the urinary catheter. Has anyone had experience with Dr. Wood other than in consultation?

2. What's the difference between "standard nerve sparing" vs "veil of Aphrodite" vs "super VIO"?

3. I assume at U of M it is the standard nerve sparing approach?

Many thanks in advance.
Posted 2/6/2011 7:41 PM (GMT 0)
TS:

I can't answer your questions. But let me add the SP catheter from Dr. Menon was great. Much less pain/discomfort than the Foley (based on comments I've read).

Also, at Ford they have apartments that my wife and I stayed at after surgery for a week until they removed the catheter. So we were 400 feet from the hospital. That was very reassuring as we live 2 1/2 hours away.

Did you already consult with Dr. Menon and Dr. Wood??

It just seemed Ford was much more open. During my consultation at Ford they answered many of my questions before I asked them. For example, they mentioned that Menon, not anyone else would be at the console. They mentioned his team did the opening, insertion of the robotic arms, and the closing. They were also right up front in detail regarding the side effects. They did explain the veil of aphrodite technique. I can't remember it now. In my case, the pathological results were lousy. I still have almost complete ED 1 year later. But I have been 100% continent since a month after the surgery. For me ED is just not a big issue. I think I was treated very well, the surgery went well, and I can't blame Menon for the poor pathology.

I did also meet with Wood. He was pleasant, confident, but just not forthcoming. He took plenty of time to answer all my questions, but he added nothing else.

Still, I would have been confident with either surgeon.

Where do you live?

Mel    

Posted 2/6/2011 10:24 PM (GMT 0)
More,
Like you, I had a lengthy list of questions when I went to see the oncologist who eventually did my procedure. Now here is the strange but wonderful thing. After his presentation, he had answered EVERY one of my questions without my having asked them. He impressed me, and gained my total confidence. Whatever you choose, I think that confidence in the 'provider' is precisely that for which we should strive.
Posted 2/7/2011 10:58 PM (GMT 0)
Have met with Dr. Wood. My sense of things at U of M was the same as yours. Yet to see Dr. Menon. Live in Michigan, and feel lucky to have such high quality options close to home.

As Compiler notes, can't affect my ultimate pathology. Looking to impact on what I can -minimize complications.
Posted 2/7/2011 11:31 PM (GMT 0)
OK-- I'll be curious about your impressions of Dr. Menon

Mel

Posted 2/20/2011 10:43 PM (GMT 0)
Sorry for the late follow-up:

All the doctors we saw (two surgeons and a radiation oncologist) were very patient in answering our questions. As I expected, most of our questions were answered in conversation rather than having to resort to firing questions from a list. In fact, all three doctors sent in someone to talk to us first (two residents and a physician's assistant), answer all our questions, and then came in themselves to patiently answer the same questions again. I was impressed with everyone.

In the end we chose surgery with Hans Stricker, mainly because of the sheer numbers of these procedures he has performed. I would have been comfortable with the other surgeon, too, or the radiation oncologist had we chosen that route.
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