I had RALP at University of Chicago, and willing to share my story.

I was just reading a topic, and noted a post from "Jack and Diane". They are in the Chicago area and are seeing a surgeon I interviewed at the University of Chicago in the summer of 2016.

I'm another Chicago area native, and after a lot of research, had RALP at U of C, done by Dr. Shalhav.
Anyone who would like information about my experience is welcome to email me. My address is in my profile.

I didn't get active in this forum till after my surgery, but I wish I'd got involved earlier. There are so many helpful people here. I'd like to give back to those with questions.

We'd love to hear more about you experience.

Glad you're here,
Andrew

Paxton-
That's a fine idea!

I will work on putting together my story and posting it here.

It is a good time to begin my story.

I've been having annual physicals for a number of years now. I think it had been a little over a year when I saw my internist in early June of 2016. My PSA had always been below 4, but at that time it was 5.1. Being a conservative physician, he advised me to consult with a local urologist. That doctor was relatively new in a practice I was familiar with, as I knew the senior man in the practice socially.

Anyway I saw Dr. John Milner, and he retested my PSA, and it had gone up to 7.22 in about a week. Milner had some other measurement (don't remember if he told me the name) which predicted I had a 50% chance of cancer. My biopsy was done a week later.

The results were 7 of 13 cores positive. 4 were 3+3, with a max of 75%. 3 were 3+4 with 20% and 50%. The right side cores all had cancer.

The clinical diagnosis was Gleason 7 (3+4), cT1c. DRE was asymptomatic.

Milner met with my wife and I and explained the diagnosis. He said I was Intermediate Risk and said some treatment was needed. There was an excellent chance of a "cure". Milner is a surgeon, had done a fellowship at Loyola University Medical Center and served on their staff for a while, so he talked up surgery. His manner was a little off putting as he talked up the worst case scenario regarding the side effects of incontinence and ED. It seemed like scare tactics to us.

I had some basic knowledge about prostate cancer and surgery, but when I listened to what I might face after the operation, it was sobering.

Milner pointed me towards some reading on the AUA website, and advised me to do some research about the disease. He encouraged me to get another opinion and do my due diligence. I was to check back with him in a month.

He also told me his practice had a radiation clinic and that I should consult with the RO there, just so I knew about that treatment.

I will pick up the next phase in my story in the next post.

Continuing the story, and talking about surgery:

First thing is I had never had major surgery, or general anesthesia, so I was going into uncharted territory. I read all I could about the RALP procedure, and talked to friends who had been through it. Intellectually, I understood it. I was aware of the risks of surgery; death being one of them. I figured I was a healthy person, in decent shape, with good heart/lung function. Doctors told me I was a perfect candidate for surgery. I wasn't scared about death. I knew internal bleeding and blood clots also were risks of surgery, but they occurred in the minority of cases. Again, statistics indicated my risks were not high.

A couple reasons I chose robotic surgery were, first, less risk of blood loss and bleeding compared to the open method, and secondly, because of the magnification and better field of vision, coupled with the precise nature of the robotic instruments, the surgeon can stitch a better connection when he reconnects the urethra to the bladder. Remember, this is what I read. Look, more stitches have to be better than fewer, right? A better connection ought to lead to better urinary function afterwards.

Checked in very early at the hospital on the appointed day. U of Chicago has that process finely tuned. The waiting area is quiet and comfortable. Surgical patients are called up in groups and then led to the pre-op floor. A nurse takes over from there. You're readied and hooked up to monitors, etc. After a bit, my wife was brought in for a while. Then she's taken back to the waiting area. A surgical fellow arrives to go over the procedure and obtain some signatures. Next was the anesthesiologist, who was a nice guy. He assured me I wouldn't be nauseous when I awoke. I guess I didn't fit that profile, but they'd give me something just in case.

Soon it was time to go to the OR. The anesthesiologist and a resident accompanied me. I asked if they'd give me something to relax me, and as we started to enter the OP, one of them said you should be relaxing now. I did notice how modern and clean the OR was. U of C built that wing just a few years before. I saw the robot, and the last thing I remembered was being moved onto the operating table and strapped down.

Then it was 4 hours later, and I was foggily regaining consciousness. I guess I was asking where I was and the nurse assured me I was in recovery. I was in no pain that I recall.

The first sign that not all was right happened when the surgical fellow came in to check on me. He asked a couple of questions and then checked the drain on my right side. He said there was a lot of bleeding through the drain, much more than normal and asked the nurse for help. I know the dressing was changed, but I didn't want to look.

Sometime later I was moved to my room. When I got there a few nurses were on hand and as I was settled in the bed, the nurses noted the dressing at the drain was blood soaked and needed changing. I was moved around a bit as that was done, and couldn't help noticing how much blood was on the gown and bed. I fainted for a few moments then. I recovered quickly, but they called in a crisis team; not a crash cart though. My BP was very low, but when taken again a couple minutes later it returned to the normal range.

Listening to everyone, it was clear to me I was still bleeding. I had my Hemo. checked often the next few hours, and it kept going down. My vitals were otherwise fine. I was really concerned, but not panicky. Residents were talking to me, and communicating with Dr. Shalhav. One resident said Shalhav would probably want to go back in to fix things. They sent me for a cat scan of my abdomen.

Eventually, Shalhav came in and said I was still bleeding, and there was a small quantity of blood in my abdomen. Not a large amount, but some. He said there was no sign of bleeding before they closed me up earlier. Anyway, one option was to go in for another operation. It would take him an hour to clean things up and find the bleeding. More anesthesia, etc. I can tell you, at that point I really, really didn't want another operation.

The other option was to hope the bleeding stopped soon. Your body should get it stopped. If so, the amount still in me would be absorbed over time. It would delay my recovery though. I was in favor of this option.

Shalhav told me he would check my Hemo. in 30 minutes. If the count continued down, he was going back in. He reserved an operating room.

The next blood test indicated the bleeding had stopped as the count stabilized and actually went up a tenth or two. Hallelujah! However, I couldn't help thinking I had been the unlucky guy to experience blood loss.

I was at the hospital overnight, but still very weak. No pain, and I'd started passing gas that night.
I tried walking the next day, but really couldn't get too far. Early afternoon I tried walking a bit further. My wife and I were heading back to the room when I started to feel faint. As luck would have it I was at the nurses station, and a doctor was standing nearby. They saw my distress and caught me as I fainted again.

Back in the room, the nearby doctor questioned me and looked at my vitals (normal!). She felt there was no clear medical reason for my fainting, but it can occur. If that condition arises you might suffer from fainting for a week before your body fixes it. I don't recall the name of the condition.

I ended up getting a transfusion of 2 units that afternoon, and began to feel better. Not so much strong, as just less weak. I was discharged later that evening, and home by about 10pm.

Thinking back, the catheter was a non-issue. I guess I had other things on my mine.
One other thing; in my talks with Shalhav before scheduling, he had mentioned having an MRI. He claimed it could give him perhaps a bit more information that would direct his surgical approach. U of Chicago was doing a clinical trial of a different kind of MRI and I was invited to participate. Turned out I didn't qualify because some test of kidney functions wasn't quite high enough.

I pressed Shalhav about a regular MRI and he said it wouldn't hurt. My surgery date was approaching soon, and the only day available for the MRI was the day before surgery. Yes, I was there for the MRI on a Monday, and then back early the next day for surgery. In hindsight, I doubt the MRI made any difference in my surgical outcome.

I will close this part of my story by saying how impressed I was by the level of care I got from the staff at U of Chicago. Doctors, residents, nurses and aides all treated me with care, compassion, and a high degree of professionalism. That confirmed my choice for the surgery.

I'll pick up later on what followed.

Matt Age 46 said...
... positive PC for 3 of 15 cores. Each positive core was <5% cancer and all three were scored Gleason 3+3=6. ... He also indicated that he does a lymph node dissection with every surgery, which is appealing to me.

I am uncertain as to a number of acronyms used in posts, but hope to fine tune my knowledge shortly. Hello to all my fellow Chicago participants on this site!

Hello Matt, and welcome from a fellow-Chicagoan (suburbs in my case).

A couple things caught my eye (which I've quoted you on, above). It sounds like you are very early in your learning curve in understanding prostate cancer. From everything you've posted about your case, you should not be rushing anything...especially an aggressive, irreversible surgery which leaves you with life-long side effects. Men with your diagnosis do not improve their longevity or cancer control by having surgery...did you realize that? Take your time, and learn a little bit more. A great starting point for newbies like you who are interested in starting with acronyms is the sticky thread that was put together several years ago my the men here at HW/PC titled, "Newly diagnosed with PC? -- read this thread first" There are lots of important things for you to learn in that thread.


The other thing that caught my eye was the mention of taking lymph nodes for your clearly low-risk case. Those lymph nodes are not like the appendix...no known function; lymph nodes support your immune system. In some men with more substantial disease than you, lymph node dissection often makes sense...but less than 15% of newly diagnosed cases are in the high-risk category, and lymph node metastasis is only found in about half of those high-risk cases. Essentially the only reason to take lymph nodes during a radical prostatectomy is to determine, before ripping the prostate out, whether there may be metastasis...and if there is, then the surgery is STOPPED before prostate removal. Your case is not high-risk, or unfavorable intermediate-risk, or even favorable intermediate-risk...yours is low-risk. Having now had not one but 2 biopsies, your chances of upgrade are greatly reduced, so you have essentially zero need for lymph node dissection. Essentially zero. Automatic lymph done dissection is a hold-over from the days-gone-by of more higher risk cases—a generation ago—at the time of diagnosis...very few surgeons do this step in the contemporary era unless there is a reason.

Take your time, and learn a little before leaping...I strongly encourage doing this before, not after, you submit to life-altering surgery...psychological studies of men who "rushed" into surgery for low-risk prostate cancer (like your case characteristics seem to be, from what you've shared) found the highest levels of "treatment regret." Make sure this isn't you.

Matt, please consider opening your own thread so that tennisplayer's thread doesn't go off-track...thanks

Post Edited (JackH) : 1/22/2017 4:55:26 PM (GMT-7)

Lymph node dissection during RP in intermediate-risk cases is controversial—that is, some believe it to be worthwhile, others not. Those working to improve its utility have developed tools using case characteristics (beyond just Gleason score) to better identify the still relatively small percentage of cases for whom the procedure might prove beneficial…like yours. To have removed 44 LNs, your surgeon was undoubtedly aided with one of those risk stratification tools which indicated a risk =>2%, (which is directly in the NCCN guideline).

But the situation described above is low risk, and the approach is not “extended.” The NCCN, EAU and AUA don’t recommend LN dissection for unindicated low risk cases. Here’s the AUA guideline (copy/paste):

4. Pelvic lymph node dissection for clinically localized prostate cancer may not be necessary if the PSA is less than 10.0 ng/mL and the Gleason score is less than or equal to 6.

Although pelvic lymph node dissection is often routinely performed in conjunction with radical prostatectomy, its morbidity, even if limited, must be considered. This is especially true in cases where it offers little additional information. A benefit to standard lymph node dissection has not been conclusively shown.23 Several studies have shown increased sensitivity; in addition, that there may be a recurrence and survival benefit associated with extended lymph node dissection, especially in intermediate- to high-risk patients, even when all nodes are negative.23-26 In extended lymphadenectomy, the area of additional dissection involves the region from the external iliac vein to the internal iliac vein medially, and to the bifurcation of the common iliac artery superiorly, rather than to just the obturator fossa.27 The benefit accruing to this more extended dissection must be balanced against the potential for increased morbidity, however, making careful patient selection critical.28

Measurement of pretreatment PSA level, supplemented with clinical stage and Gleason score information, can identify a subset of patients in whom the incidence of nodal metastases is very low (3% to 5%). Patients with a pretreatment PSA level <10.0 ng/mL and a Gleason score =6 rarely have nodal metastases, and it may be appropriate to omit lymphadenectomy in this group. These observations have been made in several large series of patients.

Thanks tennisplayer for putting it all out there. A better than average thread on this forum!

I have to give you the prize for positive outlook, Tennis. Pleased with your surgical outcome after all that..or did you mean you were pleased with the PSA level ? Who was your surgeon..I seem to have lost that somewhere in the thread.

sheepguy said...
I have to give you the prize for positive outlook, Tennis. Pleased with your surgical outcome after all that..or did you mean you were pleased with the PSA level ? Who was your surgeon..I seem to have lost that somewhere in the thread.

My surgeon was Dr. Arieh Shalhav, at U of Chicago.

I was pleased that the cancer was well treated, post PSA is great, and have had no continence problems. I would have liked not to have bleeding and clots, but it happened. I choose to look at the positives.

JackH said...
tennisplayer,

Your case illustrates the complete randomness of the "slippery slope" that so many men step onto as they undertake the aggressive treatments that are available today.

You seemed at first to have a very typical case...in fact, one that that was only a little bit over the line in terms of whether treatment was even needed or not. You selected a very highly regarded, highly experienced surgeon at one of the NCCN's Comprehensive Cancer Centers, so you certainly lined-up the odds in your favor.

And already—barely 3-months after surgery—you've got harrowing tales to tell.

You certainly didn't think, when you first signed up for surgery, that all this was going to unfold, did you...?

Absolutely not!!! When the statistics show only a real minority of patients suffer from the worst complications, you never think you'll be one of them.

Tennis player

You're experience makes me happy I had open surgery at Johns Hopkins . What a harrowing experience you went though! I played golf three weeks post op. Dr Schaeffer my surgeon at JH switched from robotic to open the day before surgery. He's now head of urology at Northwestern.

Bob