Newly diagnosed in Dallas, need advice on surgeon

I am 42 years old. I have had two biopsies showing Gleason 6 malignancy. The first was in late December by my first urologist. He recommended surgery, but he had only done a handful of the robotic surgeries. I knew enough even then not to want to be part of his learning curve. A friend of a friend who is a urologist recommended Dr. Roehrborn at UT Southwestern. I've met with him, and under his care I had the second biopsy and an endorectral MRI. He has done 1500 or more robotic prostatectomies, and I like him a lot. But I want to be sure about this, and I also want another opinion at a minimum.

While my Gleason score is low, and cancer volume shown on biopsies is low (2% of one core on 1st, and 8% of one core on the second), because of my age (42), PSA level (4.44, high for my age), PSA density (prostate weighs only 18g, so high PSA even more concerning), PSA velocity (jumped from 2.44 to 4.44 in 6 months) and free PSA (14.64), surgery is looking like it might be the choice. Plus at my age, that would be a lot of years of AS, and I don't think I can handle that many more biopsies!

I know there are big names nationally, like Patrick Walsh, Scardino, etc, but is it worth it to travel all that way? I've read Walsh's book, and it seems like the biggest difference between surgeons is in potency results. That is very important to me, and I would consider travel if the difference was significant.

Is there anyone here that had the procedure in Dallas/FW? If so, I would appreciate any information you can provide about your experience. I would also be grateful for any thoughts about surgeons in other areas of the country that you believe are worth the travel.

Any help for this worried mind is appreciated. Thanks!

-Jason

Post Edited (JRK) : 3/17/2014 2:52:13 PM (GMT-6)

Dr. Rohrborn did mine 3 years ago.  I really liked him, and the services at UTSW were outstanding.  I have nothing but good things to say about my experiences there.  I'm from NW Louisiana so the whole process was somewhat transient for me.  Unfortunately, my outcomes were not great - eventually required a sling for incontinence, and trimix for ED.  I don't fault the doc or the facility - just think I'm one of those in that lower percentage.  Additionally, I was one week short of 60 on surgery date. I would be glad to answer further questions if you want - feel free to email me.   

Jason...I can tell you if I had to do it all again I would look into TFT. Surgery is permanent. You can't unring the bell.

G6 is such a relief and headache all at the same time. Happy for the low gleason but overwhelmed with the choices as you have more than others.

The good news is...you're afforded the time to think it all through and come to a decision that gives you peace.

Hi Jason, welcome aboard. Sorry we have to meet like this but glad you found us so soon. I am from Dallas but now live in So. Florida.
Sounds like your guy has plenty of experience. You may take some time checking out all treatment options because most all of them will work for you. You do have plenty of time, the good news is PCa is a slow growing cancer.
I chose surgery and had the surgeon who has done more than any doctor in the world, currently about 6,500 DaVincis's and I have incontinence issues 19 months after surgery and still working on ED issues. So it is important to pick a good surgeon but there is no guarantees with even the "Rock Star Surgeons" like mine. Every patient is different, every cancer is different and ALL treatments have side effects.
Good luck with your decision. It is a great relief once you do decide on a plan.

Bill From Florida

Hi Jason-

Sorry you are here, but glad you found us. This is a great place for information and support.

I was diagnosed last year at age 41, similar to your age. It sounds like you are approaching this calmly and asking the right questions - which is great. I encourage you to read Dr. Mulhall's book (linked below) before you have surgery so you know what to expect regarding sexual recovery after surgery.

Mind if I ask how you discovered you have PCa? Most docs don't do routine PSA tests for guys as young as us.

-Gedaliah

Welcome to HW, sorry you need to be here but it's a great place to ask questions.

Hang in there and keep us updated on your progress.

Andrew

www.drkeithwaguespack.com/

That's a link to my URO Surgeon. He has offices in Arlington and Las Colinas.

TDubb... your tumor couldn't be anything lower than Stage II post surgery. There's no such thing as Stage I after you've had surgery.

Thanks for all of the responses. I'm so glad I found this forum. You have given me much to think about. I have an appointment with Dr. Roehrborn tomorrow to go over the results from the second biopsy and discuss options. Ya'll have given me a lot more questions to ask.

With regard to the TFT, I've already had an TRUS MRI. It found one suspicious area, but when Dr. R biopsied that area in the 2nd biopsy, it came back negative for malignancy. The one core that came back positive for cancer in the 2nd biopsy was in another area, which I think was also different from the location of the cancer found in the first biopsy. So, right now, we don't know the location of the cancer with enough precision for TFT, I wouldn't think, but maybe there is another scan that could be done. I'll read up on it. Dr. R hasn't mentioned TFT as a possibility, but I'll ask him about it.

Hi Jason,

I had my RARP in December of last year at UTSW and went through the same search you're going through. I came up with 3 guys in the DFW area that are experienced and have good reps: Roehrborn at UTSW, Cadeddu at UTSW, and Lee at USMD in Irving. There's an older thread here where several of us that had done the search recently compared notes and had come up with the same 3 guys. I ultimately went with Dr. Cadeddu because he did all of his training at Hopkins, is actively doing research on techniques to improve continence and ED, and he's basically a cool guy with a great sense of humor. Ultimately, it came down to a gut feel and trusting him. I'll second the feedback on UTSW--it was unlike any other medical experience I've had: everybody is friendly and hyper-competent. The Zale hospital, where the surgery is done, is amazing. My results were great: appears to have got it all, total continence from day one, and ED is manageable and improving at 3 months. I had some type of abnormal third blood vessel that required more time in surgery, and Dr. Cadeddu took the extra time to spare it. Not sure that would have happened with some of the other guys.

It may be different for you, but making the decision to have the surgery wasn't a huge deal for me, but the choice of surgeon was agonizing and the worst part of the whole deal emotionally.

Good luck with whatever your choice is,

Dave

Hey Jason,

He was in the mid-600s on RARPs back in October 2013. It sounded like he does 15-20 RARPs a month, since he travels a lot teaching. He was a late adopter of the robot because he wasn't seeing much difference in outcomes between it and laparoscopic. He's done a lot of laparoscopic and open, so I was comfy that if things got ugly he could bail out and go to open. I (duh) forgot to ask about the quantitative outcome data even though it was on my list because I got all focused on questions about anatomical reconstruction work that they're apparently doing now to support the bladder and improve continence. I know he keeps the metrics because they follow up with me periodically. One concern that another guy had was that the doctors in a teaching hospital might allow others to run the robot. On my surgery Dr. Cadeddu was the sole console operator. The chief resident was the bedside surgeon.

No, I was going to see either Roehrborn or Lee after Cadeddu, but I'd already talked to another guy and my wife and I really clicked with Cadeddu.

As far as the number of surgeries goes, I wanted to see 400+ and a lot of open experience and I *really* didn't want a guy that was doing 5-7 a day--I'm pretty sure I'd have never even heard about my third blood vessel and would now be suffering from severe ED if I'd gone to a high-volume guy.

You probably can't go wrong with any of the 3. In fact, I asked Cadeddu who else he'd recommend and he listed Roehrborn and Lee. I'm sold on UTSW. One big stressor I had was worrying about dealing with the insurance company, a zillion specialists separately billing me, balance billing, out of network, etc., etc. No problem--two bills, professional and hospital, and zero disputes with the insurance company. I hit my in-network out of pocket max and that was it.

Oh, and Cadeddu (and probably Roehrborn) uses a suprapubic catheter which is a hell of a lot more comfortable than the urethral and may improve short term continence.

And another factoid, US News ranks UTSW Urology at number 21 or so nationally, the only highly ranked urology department in Texas (or the surrounding states). They're way up there (like 100%) in surgical outcome stats.

As much as I think of myself as a by the numbers, just the facts guy, ultimately for me it came down to confidence in the surgeon. I sounds like you may already be there with Dr Roehrborn. Based on positive experiences by several people in earlier email threads it looks like you probably can't go wrong with any of the 3.

Cheers,

Dave

Robin,

I had been wondering about MD Anderson, as I hadn't seen much on here about them. The multidisciplinary clinic sounds like a good idea to me. Thanks.

-Jason

Roy,

What surgery results did Dr. Lee give you? I think Dr. R said 98-99% of his patients were continent and 65-70% were potent. For my age, though, he thought the chance of potency would be 90%. That sounds high from what I have been reading on this forum, but there aren't many at my age so that probably explains the difference.