I've been lurking here for last couple months and have found the information very helpful. Now that I have a successful surgery behind me, I thought I'd de-cloak and share my experience / some of what I’ve learned. This will be somewhat of a lengthy post but I hope that it will be helpful to others.
I’ll start at the beginning as I’d like to raise awareness of the way that I, thankfully, did come to be diagnosed but also quite easily could not have been... I turned 40 in November and went in for a physical expecting DRE and PSA tests. My father was diagnosed with aggressive (GS 9) PCa in his mid-80s and a colleague of mine was diagnosed at 40, so this was really on my radar. I was surprised when my internist recommended against screening citing the latest USPSTF and ACP recommendations. After doing some research, I eventually decided to go in for a free screening at the Medical College Urology clinic. I figured I was simply taking the high side of caution and fully expected everything to be normal but at least obtain a baseline PSA for future comparison. I was a little surprised when the nurse detected a “subtle nodule” on DRE but she did not seem too concerned, telling me she would pass it on to my internist but “that may just be the way your prostate is”. So when I eventually received the PSA result of 1.23 (which for my age is higher than average but still with the “normal” range) I figured I was in the clear for the time being and put it out of my mind.
Well, I was pretty surprised two months later (early March) to be contacted by my internist asking me to come in to discuss the results. When I went in he repeated the DRE (which I wish he would have just done at my physical in the first place) and remarked that he wouldn’t really describe the nodule as subtle. He told me I could either come back to see him and repeat the PSA in three months and/or go see a urologist. After sensing his level of concern I decided on the latter and by the time the Urology consult came around I already knew from my own research (which told me that abnormal DRE is 30%-50% predictive of PCa) that I wanted a biopsy.
I actually ended up seeing a very talented physician’s assistant in Urology who confirmed the DRE finding (he described it as a “region of induration” affecting the mid right lobe) and that a biopsy was indicated, which he would also perform. The biopsy was a piece of cake. He gave me a local and I didn’t feel any further pain during or afterwards. When the biopsy was done he actually told me, perhaps from what the ultrasound looked like, that he would be surprised if it was positive. However when he called me a couple days later (March 28) I found out that unfortunately that was the case: 2 positive cores one right-mid (10%) and one right-apex (20%) both GS 3+3 but with PNI in the apex.
So then the period of worry and uncertainty really began. I got appointments with a couple of top local urologists but I had to twist in the wind for nearly two weeks before seeing them. Knowing from my PSA and Gleason score that I was a relatively low risk patient certainly made it easier and fortunately there were great resources like this forum and Patrick Walsh’s book available but still the diagnosis and the decision process would be major weight on my shoulders for the next several weeks. At my age and with a wife and young children I felt the stakes were exceptionally high and knowing the one-shot nature of prostatectomy I wanted to do everything possible to absolutely maximize the chance of a good oncologic outcome.
When they finally came around, the consults with both of the local surgeons were very informative and reassuring in that they confirmed my good prognosis. Both were doing exclusively RALP. One was fellowship trained at City of Hope and has around 900 RALP procedures under his belt the other had switched from
open to robotic several years ago and had done about
400 RALP. However I was not really satisfied by the 6% to 10% positive surgical margin rates they cited for the best case scenario of pathologic organ-confined (pT2) disease. I was also not really comfortable with their proposals (insistence in one case) to omit lymph node dissection based on my low-grade biopsy since I knew that something like 30% of the time the GS is upgraded at final pathology.
One thing I really appreciated about
the second doctor was his encouragement, without any prompting by me, to consider traveling to a national center of excellence (he threw out Mayo as an example) if that would make me more comfortable. The way he put it was that although I had an excellent chance of a positive outcome in his or any competent surgeon’s hands, in the unlikely event of an imperfect outcome I would not want to second guess whether I should have gone somewhere else. This affirmed what I was already thinking from having read Walsh’s book and the experiences of many people here so I decided to broaden my search for a surgeon.
From Walsh’s book and other accounts I’d seen, the Johns Hopkins Brady Urological Institute was at the top of my list and as luck (or perhaps Divine providence) would have it, I already had business travel scheduled to the Baltimore area near the end of April. I also considered a handful of other doctors / institutions (see notes at bottom of this post) based my research (primarily published surgical margin rates).
Ultimately I decided to have
open RRP done by Arthur (Bud) Burnett at Hopkins. My key deciding factors for RRP over RALP were as follows...
Although on the surface RALP appeared attractive, the closer I looked its actual benefits over RRP for me being young, healthy and not overweight seemed pretty minimal:
- Less blood loss (due to the pressurization of abdomen)
- Possibly it might have made it easier to work around my prior hernia repair
On the other hand, I felt there were several significant disadvantages to RALP vs. RRP:
- Lack of tactile feedback. While most RALP surgeons will say they can compensate by using the 30x magnified 3D vision to watch how the tissues respond as they tug and poke them, at least one doctor who does both (Schaeffer at Hopkins) recommends open surgery for palpable tumors like I had.
- RALP requires general anesthesia, which brings its own risks and complications (at a minimum longer perioperative recovery time). I really preferred regional.
- RALP is arguably more invasive than RRP due to five separate incisions (one of which needs to be significantly enlarged to remove the specimen) and violation of the peritoneal space.
- Potential for robotic failure or malfunction. Although I’m told the rate is only like 0.5% and all of the institutions I considered would probably have a spare available, from my own background in medical device safety I’ve seen enough device-related adverse events to be wary of unnecessarily introducing complex technology into the loop without a sufficiently compelling benefit.
I also decided to have an endorectal MRI as was recommended by the second local urologist to plan nerve sparing even though the first said it had no value. I figured it would be another data point that I would take with a grain of salt if it looked good (I still wanted, at most, partial nerve sparing on the right given my palpable lesion and PNI) but take seriously if it suggested possible extra capsular extension in which case I may want to pre-decide on unilateral nerve sparing vs. leaving it to an inflight decision. I’ve had other MRIs before but never one with this particular coil
which the radiologist positioned himself after performing a DRE. That was the worst part and it really was not that bad. The study took about
an hour with contrast agent administered at the end. I got the results a couple days later and, although I tried to take them with a grain of salt, I was very pleased. A lesion was imaged in the right mid and apex but not the most inferior apex at the urethral sphincter (which is very prone to positive margins). The lesion did not have the typical diffusion-weighted features of aggressive high grade PCa. No evidence of ECE, neurovascular bundle involvement, seminal vesicle involvement or lymphadenopathy.
I had my surgery on Tues, May 28 under spinal anesthesia. As it turned out Dr. Burnett encountered unexpectedly severe difficulties from my prior mesh hernia repair that he said might have caused most surgeons to abort the operation. He said many of the normal tissue planes were unrecognizable / stuck together like glue and he had to rely more on his experience and memory of the anatomy than what he could actually see to navigate through it. This caused the operation to take him longer than usual so I had some additional intraoperative blood loss and also had a lot of bloody drainage postoperatively apparently due to the additional tissue trauma. But Burnett was optimistic afterwards that he had been successful having done complete nerve sparing on the left and partial on the right as originally planned and removing 11 normal looking lymph nodes.
While I did not need a transfusion during the surgery, by the next morning my blood count had dropped to the point where I did. Other than that however, I felt very good (probably thanks in part to the regional anesthesia) and I did a lot of walking. I may have actually overdone the walking because the second night I had a lot more bloody drainage and by the next morning I needed another transfusion.
Due to the complications, I ended up staying three nights instead of the typical one or two but it really was not too bad as everyone (doctors, nurses, nurses aids, nutrition staff) at Hopkins were excellent. Also one advantage of the extended stay was that I was able to receive in-person my final pathology report, which was perfect
(GS 3+3, organ-confined tumor, negative margins)!
Our trip home was needlessly long and tiring. I had changed our original tickets to 5:00 PM, which was the latest direct flight on AirTran to Milwaukee, but with waiting to be discharged, fighting rush hour traffic to DCA and returning the rental car we did not get to the ticket counter until 4:40. They gave us our boarding passes and got me a wheelchair so we could mostly bypass the long Friday eve lines out of Washington and I would have assumed they would have called ahead to the tell the gate we were coming, but when we got to the gate at 4:52 they turned us away citing their policy to close the doors at 10 minutes to departure!
Ordinarily this would just have been an annoying hassle, but in this case having to travel with a catheter and a couple surgical drain tubes still in, being anemic, exhausted and at risk for blood clots I was pretty concerned. I was in a wheel chair, still had the patient bracelet on my wrist and a fresh dressing on my hand from the IV that was just pulled out but they just scoffed at me and refused to let me board even though the plane was sitting right there. In fact, the "customer service" guy at the counter got indigent with me
for giving him
a hard time when he was "just trying to do his job". I really didn't have the energy to put up much of an argument (and it probably wouldn't have mattered) so we ended up having to come home through Atlanta with a couple hour lay-over and didn't drag ourselves in the door at home until midnight Friday.
Since getting home I’ve been doing great. The first weekend I took the mild narcotics that were prescribed and took it pretty easy but Saturday morning I did manage to get out of the house to watch my son play soccer. Although my wife had FMLA approved for five weeks, she went back to work one week post-op. The first day she was gone, much to her chagrin, I got on my tractor (catheter and all) and cut the lawn. My catheter and surgical drains were removed on June 7 (10 days). The next day I was back in the coach’s box for two soccer games. Continence is of course a gradual process but I’m dry at night and mostly while sitting. Burnett called me last night and said he expects this to improve dramatically over the next 2-3 weeks. I have been working from home but will probably go into the office next week.
I have a follow up with my local urologist in about
four weeks for post-op PSA and to discuss rehab. Dr. Burnett put me on Irbesartan (Avapro) to speed nerve recovery and given my age and prior good function I’m hoping Cialis (at most) may be sufficient but I'll cross that bridge when I come to it!
Surgeons I considered / consulted with:Mohamad Allaf, John Hopkins:
Being initially inclined towards RALP and being particularly impressed with his CV and long list of glowing patient testimonials I decided to contact Dr. Allaf who is Director of Robotic Surgery . I was pretty surprised to see that he and so many other physicians there, who are literally among the top handful in the world, would post their e-mail addresses on their Web pages, but I was even more surprised I when I received prompt personal and warm reply from Dr. Allaf promising to accommodate me when I would be in town. When we finally met a couple weeks later, Dr. Allaf exceeded my already high expectations. Not only was he very reassuring and informative giving an honest and unbiased perspective on RALP vs.
open RRP but he also volunteered to arrange for me to meet with his colleague Arthur Burnett to discuss RRP while I was there. Regarding RALP he told me that while they have not published surgical margin rates for RALP (except for a cohort of high-risk patients), his rates were similar to those for
open RRP at Hopkins (i.e. 2% or less for pT2) and the one real advantage over RRP for someone like me would really just be less blood loss. Although I ultimately decided on RRP, it was a fairly close call and had I chosen RALP I would have definitely wanted to go with Dr. Allaf. I would highly recommend him to anyone considering RALP.Arthur (Bud) Burnett, John Hopkins:
Dr. Burnett’s credentials are truly impressive. He is a leading researcher in neuro-urology responsible for the biochemistry behind Viagra and new drug and device therapies to speed nerve recovery after prostatectomy. As a surgeon Dr. Burnett has done over 2500
open prostatectomies achieving PSM rates below 2% for pT2 disease. He explained that due to my cT2a lesion he would dissect the nerves off the prostate capsule on the left side but would go wider (extra-fascial) on the right. He also said that in his opinion
open surgery facilitates a better job of lymph node dissection, which he emphasized was potentially therapeutic in the event of higher grade disease on final pathology. He told me that for him the operation is “like making a favorite pot of spaghetti” and that he typically completes it in just around 1 hour minimizing blood loss. He also reassured me that he would be able to deal with the bilateral mesh hernia repair I had done just over a year ago. While all of this inspired extreme confidence, what really blew me away was, just like Dr. Allaf, how extremely humble, warm and accommodating Dr. Burnett was. At the end of our conversation he actually handed me his business card and told me not to hesitate to contact him should I have further questions. I did email him on several occasions and each time he was extremely responsive and genial. I ultimately selected Dr. Burnett and got a great outcome despite some unexpected complications that many other surgeons many not have been able to deal with. The care he has continued to provide post-op has been just as great – he told me “I’m always here to serve you for as long as we are both around”. I would whole-heartedly recommend him to anyone. I doubt you could find a more skilled, dedicated and compassionate doctor for RRP. Arieh Shalhav, University of Chicago:
Arieh Shalhav is Chief of Urology at University of Chicago. In 2006 he and his predecessor as Chief, Charles Brendler, had published PSM rates of 1.7% and 25% for pT2 and pT3 respectively for a series of 996 patients having
open RRP performed by Brendler between 1994 and 2004 and even more remarkable rates of only 1% and 10% for pT2 and pT3 disease toward the end of that series reflecting a number of refinements in surgical technique. I knew that Brendler was now retired, but was very interested in whether others there were carrying on his work with similar results. While I was disappointed to learn that the entire faculty had abandoned Brendler’s technique in favor of RALP, my discussion with Dr. Shalhav (who, despite a scheduling snafu, scrubbed out of surgery to talk to me for nearly an hour) was well worth it. Dr. Shalhav has done over 1000 RALP procedures and described some of the key nuances in detail. He provided some very helpful insights on nerve sparing and the trade-off between preserving nerves and avoiding positive margins admitting that there are often close calls that present a “very lonely moment for the surgeon” and that for this reason a patient should be explicit about
his personal values / level of risk aversion regarding (curing disease vs. preserving potency). He was adamant that, despite having biopsy GS of 3+3, I should still have lymph node dissection because he had been “burned too many times” by apparently low risk patients whose finally pathology turns out significantly worse and because lymphocele is unlikely and, while “annoying”, easily managed. Dr. Shalhav is also huge proponent of lifestyle and other changes (e.g. diet, exercise, daily aspirin) to reduce PCa reoccurrence as well as to avoid cardiovascular morbidity and mortality so as to actually realize the benefits of PCa cure. With the understandably myopic focus most newly-diagnosed men have on short-term action plans, I think it’s great that he emphasizes these important long-term, big-picture issues. I really liked Dr. Shalhav and would recommend him to anyone considering RALP.William Catalona, Northwestern:
Dr. Catalona is somewhat of a living legend having pioneered PSA testing and having performed over 6500 prostatectomies. At 70 years old he is still doing 2 surgeries per day and is proud of taking on high risk cases turned away by other leading surgeons. He’s definitely an old-school doctor. Of the six surgeons I met, he is only one to personally give me a very through physical (stethoscope and all). After my physical he ushered me to his office to walk me through my biopsy report and his own impressions and spent over an hour talking with me patiently answering questions and even drawing diagrams to explain his points. Like the Hopkins doctors and Dr. Shalhav, Dr. Catalona also advocates lymph node dissection as potentially curative. But he is extremely opinionated regarding the superiority of RRP over RALP and basically argues that the latter is a threat to public health having significantly increased risks with absolutely no advantages vs. RRP. While I thought he made some valid points regarding RALP (some of which affirmed my own preference for
open surgery) I felt he was overly dogmatic in this area potentially to the detriment of some patients for whom RALP – so long as it is performed by a top surgeon – may be an excellent choice. Dr. Catalona is also very big on imaging (e.g. CT scans and chest x-rays) that did not seem necessary to me as a low-risk and otherwise healthy patient. I felt his biggest quirk was that, while he claimed that his surgical margin rates were as good as anyone I would find, he would not give me any hard numbers. Apparently he believes the rates claimed by many others are misleading / unrealistic due to variations in surgical technique, pathological protocol, etc. While I recognize this could be true, at the end of the day I was just not comfortable selecting a surgeon who would not give me some hard numbers. Nevertheless, on balance I found this consultation extremely informative and would encourage anyone interested in RRP in the Midwest to consider Dr. Catalona.Thomas Ahlering, UC Irvine:
Dr. Ahlering is a heavily-published pioneer of RALP who has introduced several refinements of surgical approach and other innovations (e.g. transrectal cooling device to reduce operative trauma to nerves and urethral sphincter). He specializes exclusively in prostatectomy vs. other urologic surgeries and, as I understand it, limits his volume to one or two surgeries per day explicitly to avoid rushing / cutting corners but still has around 1300 under his belt. I really liked that he seems to be heavily focused on optimizing oncologic outcomes and had published PSM rates of 3.1% and 18% for pT2 and pT3 respectively for his 251st through 750th patients. Although he appeared to be one of the 2-3 most impressive RALP surgeons in the world, I pushed him down on my list because Irvine would have been a pretty long haul with no direct flights (not great for returning home post-op). Apparently he would have done a telephone consult, which would have been convenient, but I never needed to pursue.Ash Tewari, Cornell:
Dr. Tewari is another heavily-published RALP pioneer known for driving improvements in surgical approach. He recently published PSM rates of 2.1% and 33% for pT2 and pT3 respectively for 209 patients using his latest surgical innovation (“retro-apical technique”). Although he also appeared to be one of the 2-3 most impressive RALP surgeons in the world, I pushed him down on my list because I was not too comfortable with the idea of leaving my wife to fend for herself in NYC while I was in the hospital. I never needed to pursue a consultation.Peter Scardino and James Eastham, Memorial Sloan-Kettering:
I initially considered both doctors due to their excellent reputations and extensive experience with
open RRP. However I was not too enthusiastic about
having my surgery in New York and I found their published PSM rates on a series of 692 patients (5.3% and 24% for pT2 and pT3 respectively) to be significantly higher than those of other doctors on my list.Mani Menon, Vattikuti Institute; Vipul Patel, Global Robotics Institute Florida:
I initially considered both doctors due to their extensive experience with RALP. Also Vattikuti was appealing because it would have been a very short trip for me. On the other hand I was not really comfortable with the high daily surgical volume (especially in the case of Patel, who I understand may do a half dozen or more). Ultimately I ruled out both because when I researched their surgical margin rates (i.e. anywhere from 4%- 10% for pT2 depending on which published series) I concluded they may not be any better than I could get at home.Robert Nadler, Northwestern:
I included Dr. Nadler in my list because in 2010 he published PSM rates of 2.5% and 28% for pT2 and pT3 respectively for 95 patients using a modified RALP technique (i.e. staple ligation of dorsal venous complex). While these numbers are quite good, they are from a relatively small series. Also, a cursory search revealed a significant number of less-than-stellar patient reviews that made me extremely wary. I never pursued a consultation.