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Steven K lives in Virginia, USA. He was 53 when he was diagnosed in November, 2008. His initial PSA was 3.90 ng/ml, his Gleason Score was 7a, and he was staged T1c. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

After learning of a good friend's sudden diagnosis of stage 4 lymphoma, I decided to take my annual physical very seriously and ensure that my MD really checked under the hood. In late September of 2008, my general practitioner told me that she was slightly concerned that my PSA had gone from 1.7 to 2.4 to 3.9 over two years. During the digital rectal exam, she also thought she could feel some kind of bump on my prostate. I've suffered from benign prostate enlargement for 15 years so wasn't much concerned. She recommended I see a urologist just to be sure.

About a month later I met with a recommended urologist who looked at the test results and conducted his own DRE. He was very encouraging and could not feel any abnormality but recommended a biopsy regardless. On October 30th, I had both an ultrasound and a biopsy, 12 samples taken. My urologist was reasonably certain that the biopsy would be clear as he could see nothing on the ultrasound and he felt my risk factors were minimal. For the record - I'm a 53 year old active male in great condition, carrying only a few pounds more than I probably should (but I'm working on it). I went home much relieved and wrote the whole thing off to another one of those life passage events (like colonoscopies).

The first week of November my urologist called and told me we needed to have an extended discussion, that "cancer" was found in my biopsy. He wouldn't tell me much over the phone but ultimately the phrase "Gleason 7" slipped in. I spent a lot of panic time on the internet over the next few days! Unfortunately, I missed the YANA site!

On November 6th, my wife (Kathy) discovered a presentation on "laparoscopic robotic radical prostatectomy" scheduled for that evening at the George Washington University Hospital. Although I didn't know much about my own case as yet, we went to gather as much information as possible. I was impressed by the speaker, Dr. Harold Frazier, a urological oncologist, and his clear presentation on the use of the Da Vinci S robotic assist system. He answered all of the questions I asked after my 3 day cram session with Dr. Walsh's book and I was most impressed with this forthrightness about those cases that "went wrong." He and his partner had conducted more than 1,000 LR procedures and were "top docs" in the DC area. The techie in me was hooked.

On November 7th, Kathy and I met with my urologist and he spent a full two hours going over my test results and laying out some options. Two of 12 cores came back with adenocarcinoma, both Gleason 3+4=7, one in the left apex and the other in the left lateral apex. There was about 20% involvement in one sample and 40% in the other. There was also a "suspicious" spot in the right base. My cancer was staged at T1C. My urologist was very calming and logical but he recommended an open radical prostatectomy as he believed that the feel of the tissue was a good clue for the surgeon to use in ensuring clear margins. Ultimately, I fell back on the two things I had "learned" to date - find a surgeon who does a lot of RP's (not a few a month) and all things being equal, the recovery time and complications associated with a LR procedure seemed to far outweigh any operational limitations for "uncomplicated" cases.

I thought about heading up the road to the Brady Urological Institute at Johns Hopkins in Baltimore, a two hour drive from my home, but I was in a fair amount of panic and wanted this cancer out of me before it spread. I had visions of imminent metastasis and mutant cancer cells eating me alive. The Brady doctors were really backed up approaching the holidays and the first initial consult offered was January. It also didn't appear that they were totally sold on the robotic approach - certainly Dr. Walsh's legacy downplayed it. I didn't know what level of expertise existed there with this technology. On the other hand, I was able to get in for an initial consult with Dr. Frazier, a "known" expert, before Thanksgiving. My choice seemed easy.

Our first real interview with Dr. Frazier went well. He also spent almost two hours with us reviewing all of the case history and providing a wealth of information for us to consider. I clearly wanted to move forward and asked him to pencil me in for the first possible appointment. A cancellation opportunity presented itself and I was in the hospital for my LR on 9 December, 2008.

The surgery was scheduled at George Washington University Hospital in Washington, DC. My initial impression of the hospital was a good one and although we were delayed in starting due to Dr. Frazier's previous case running a bit long, everyone seemed professional and the process efficient. I don't remember being overly concerned as they wheeled me in to the operating room and I saw the Da Vinci S robot sitting there but maybe that was courtesy of the drugs. Off to la la land...

I woke up in recovery and felt pretty good. I had most excellent nursing care and discovered that my operation took the better part of 4 hours due to some operating challenges (fibrous tissue on one side). I would have been happy to stay in recovery until my discharge but it wasn't to be - they opened up a room on the general surgical ward around 8 pm and moved me to it. This was probably the downward turning point.

Once getting settled in my room, and after a few sets of vitals were taken, I told my wife (a registered nurse) to go home and get some sleep as I was going to do the same. I drifted off with the sound of my leg compression cuffs lulling me to sleep. No real pain as yet, standard IV with Toroidal and a few other meds to keep me comfortable. Then, somewhere around 4 or 5 am, things went really bad.

I woke up in a lot of pain, with a sensation much like a hot knife being jabbed into my intestines. I rang for the nurse a few times but it took more than 20 minutes to get any response. Once there, the nursing care was definitely lacking and she seemed unable to figure out how to respond. She told me "you just need to wait until after 6 am when the primary urology team comes on shift." I was reporting pain at a level of "8+" on a 1 to 10 scale. For me, a 10 would be - "please shoot me." A 9 is "just hack the leg off!" Regardless, not much help was available and I tried several times.

6 am came and went, then 7 am accompanied by a nurse shift change. I reported again to the new nurse that I was in extreme pain. I also noted that my JP drain was filling very rapidly but that my Foley catheter drain was moving very little fluid. I got back an interesting lecture on the "body's fluids" and that I should not be concerned. I started logging the rate of my JP drain filling (I ended up draining it myself) and then demanded some medical attention. The nurse found a physician's assistant to come take a look and he indicated that the drainage rate didn't make sense to him. Somewhere before 9 am I was able to reach my surgeon's office and plead that he come see me soon because there was something wrong (he was doing another operation at the time). A short while later, the first "staff urologists" at this teaching hospital made an appearance. A creatinine test on the fluid in the JP drain revealed that it was mostly urine. I was still in massive pain so they tried adding a bit of morphine to the mix and ultimately decided to add patient controlled morphine analgesics to my meds. It didn't do a thing.

Dr. Frazier (my surgeon) finished his other procedure and then came to see me - and I think got the whole staff responding again. I started seeing lots of residents, more attentive nurses and supervisory staff but the pain continued. I was then taken to get a CT scan to try to determine the cause of the pain. It was so intense, I could not lay down on the scan table. They finally overrode the morphine machine and dumped in about 7cc at once and over a few minutes I was able to lay down. The CT scan showed that a tear had occurred in the anastomosis and that my bladder was in "profound spasm." Apparently it was so closed up that it blocked the Foley catheter from draining so my abdomen became the new route out for urine via the JP drain. They started me on lots of Di-tropan, IV Valium, continued the morphine, added belladonna and opium suppositories and over the period of about 24 hours the spasms finally ended.

Unfortunately, this meant I would spend 4 nights in the hospital. I added 22 pounds of fluid weight (we checked on a scale while walking), I looked like I was 6 months pregnant, with a "Michelin man" penis, hugely swollen scrotum and testicles (which also hurt like hell!), swollen feet, etc. When I was discharged, I left with both JP drain in place and Foley catheter (as expected). The resident on call wouldn't let us take a large urine collection bag - they gave us a little 500ml leg bag to work with. After about 4 hours of sleep at home, the thing damn near exploded and I was back in huge pain again - back to the hospital and readmission for yet another night. My insurance gets billed for another night because a knucklehead couldn't figure out that someone voiding a liter every 2-3 hours might need more than a 500ml leg bag at night...

There was some great news in the midst of all of this. The post-op pathology on my prostate showed clear margins obtained with the cancer contained within the prostate although it approached the edges of the capsule. Seminal vesicles and lymph nodes were clear. Pathology staged the cancer as pT2c, bilateral disease, Gleason 3+4=7 with 25% prostate involvement. Due to the presence of a lot of "fibrous material" during my surgery, I lost at least part of one nerve bundle but the second was spared. All in all, this was the best news I could hope for and a great Christmas present.

OK, almost done. On the 10th postoperative day, the JP drain came out (good creatinine test), having moved more than 4 liters(!) of fluid. On the 13th postoperative day, I had a cystogram conducted which showed a small leak continued from the anastomosis so the Foley had to stay in place. Today (5 January 2009), the 27th post-operative day, my Foley catheter finally came out, after a cystogram showed that the leakage had stopped. It was huge relief.

I won't say I'm "dry" on the day of removal but I'm a lot more controlled than I expected, especially given my other complications. So far, one extra absorbent pad has done the trick for 10+ hours. I've got a fair level of control, Kegeling largely seems to work although stress incontinence is clearly present. I've got to get into the "leakage aware" mindset before I move, sneeze, laugh or stretch. If this is day 1, I have high hopes that at least incontinence issues should be very manageable for me.

Why am I writing this so soon? I suppose mostly as a note of "caution" to all of the newly diagnosed. I was so scared by the thought of "cancer" that I didn't really take the time to do all the research I should have. I didn't find the YANA website until post surgery nor did I join any of the USTOO mailing lists until I was home recovering. Although my surgeon and his practice is ranked as one of the "top docs" in the Washington, DC area by Washingtonian magazine, George Washington University Hospital is not even a player per the US News and World Report urology center rankings. I didn't consider that a surgeon in a teaching hospital is treated a bit like an independent contractor - and the after-care is as important as what happens while he's doing his magic. To be fair, I don't know if the complications I underwent could have been avoided entirely had I been in a center that focused on urological care like the folks at Johns Hopkins - but I do think it would have been addressed many hours faster and a lot of pain and suffering avoided. Word of caution - it takes a team to treat prostate cancer, not a single superstar! Don't let fear drive you to make snap decisions. In retrospect, I still think a great deal of my surgeon but I'd have to think long and hard about the advantages of having surgery at an internationally recognized center of excellence for this kind of care. My surgeon told me my case is an extreme exception - only the 5th remotely like it in the last 500 he has done, but I sure hated to be the poster child for "when things go wrong."

I'll be back in touch in a few months once my first post-op PSA comes in. Good luck to us all and here's to a wonderful 2009!

Steve

UPDATED

April 2009

Back again.

I'm now 4 months post-op and recently had my first PSA test - essentially undetectable!

I was also fortunate that despite all of the complications of the post-op period and my month with a catheter, I'm pad-less and happy. Within two weeks of the catheter's removal, I was essentially dry. I still need to exercise caution when sneezing, etc but I truly lucked out in the continence area.

My surgeon is actively working with me and has sponsored intensive rehabilitation to try to recover potency. I'm taking 50mg of Viagra daily (no effect), working with a VED primarily to avoid "shrinkage" (seems unsatisfactory for anything else) and will start Trimix injections next week.

Regardless, all in all, I count myself very lucky!

UPDATED

September 2009

I'm just now 9 months post-op and the news thus far is excellent. My PSA at the 9 month point came back undetectable once again so I couldn't be happier with the primary outcome. The second factor for treatment satisfaction is also positive - virtually perfect continence. No pads, no issues other than reminding myself never to "try" to pass gas - always a risk! The final of the trifecta, potency, while not spontaneous can be achieved via injections and I'm still hopeful to see some more gains in that area. Overall, I couldn't be happier.

I received an e-mail query from another YANA visitor regarding my treatment and whether I could recommend using Dr. Frazier and GWUH. Tempered by months of reflection, I'd like to update my story . First, I take nothing back - the events unfolded exactly as I laid them out. On the other hand, that doesn't mean that I'd be afraid to use Dr. Frazier or George Washington University hospital (GWUH) if I had to do it again. To the contrary, I absolutely trust Dr. Frazier and would actively seek out his help or recommend that my sons see him if they needed a urologic surgeon. He even calls me at home at night from time to time to follow up on care. That seems pretty rare these days! The surgery was successful, the side effects either minimal or resolving and the follow-up care excellent.

As far as the hospital, that's a bit harder. I contacted the GWUH administrator relatively soon after my first YANA blog and sent in all of the documentation I could muster. I was contacted by the hospital and they conducted an investigation. While part of me wanted to see people fired, that's probably a bit of overkill. I was assured that the hospital has taken steps to ensure the staff is more responsive to their patients in this area. I also am quite certain that Dr. Frazier, who appeared personally and professionally embarrassed over the care given in a hospital that he is associated with, probably had a few heads on a spike. Therefore I am fairly confident that 99% of RP candidates would have no issues as a result of the general care by the hospital staff. Even if someone had the kind of massive bladder spasm reaction to the surgery that I experienced (a very low percentage of all cases), I think the GWUH staff would likely deal with it now far better than what happened in my case.

The real lesson for me is the need for a patient advocate. I was feeling so confident (and happy drugged) post-op that I thought everything was under control. When I needed help, unfortunately there was none to be found. Had my wife (a nurse) stayed with me the first night as she clearly wanted, things might have turned out far different. When confronted by major surgery, I don't think it unwise for anyone to consider having an advocate check up on them with pretty fair regularity that first night, whether staying over or not, regardless of which hospital they are treated at.

Good luck to us all!

Steve

UPDATED

February 2011

I'm just a few months past my two year anniversary and I'm quite happy to be able to say that my PSA remains undetectable. Continence is good and other than having to pay attention to an occasionally sensitive bladder, no problems there. Impotence is not resolved but bi-mix injections suffice. I had hoped for more but no such luck.

The only real issue related to the cancer surgery was my need for emergency surgery a few months ago to correct an intestinal obstruction that apparently resulted from scarring from the prostatectomy. It appears that scarring strangled a segment of my small intestine which then required removal. It was another 8 day hospital stay and two month recovery but I'm past that now. Anyone getting abdominal surgery including RALP should realize that there is always a potential for such scarring - somewhere between 10% and 30% depending on the source quoted.

I still believe that surgery was the right decision for someone of my age and physical condition but I probably should have taken more time and really considered all options before jumping for the operating room. Your choice will almost certainly be a life-changing decision and it's important not to underestimate the probability that you will leave surgery with effects beyond just the removal of the cancer.

UPDATED

April 2012

The good news - 3 years and cancer free. I'm feeling better daily that the beast is gone.

The bad news - this is not the no-permanent side-effect operation that I expected. I carry a bit of apprehension that internal scarring will return and require more surgery - I dread every little belly twinge or stomach pain. Having now met quite a few other patients, I think it would be most appropriate if the medical establishment would be clearer that it is the exception that makes total recovery, not the rule. I'm happy with the overall outcome, however, continue to see the medical establishment downplay the challenges that many if not most of us will face post surgery.

Be well but if you can't be, then be informed!

UPDATED

April 2013

It's been a bit over 4 years and I'm still here so that's a positive sign. My most recent PSA was essentially undetectable so the most important criteria for success was achieved. On the other hand, the remaining parts of the trifecta have not been as positive. The impotence has not resolved although tri-mix does help. I am pad-free for most occasions but sensation is intermittent with urinary urgency and the feeling of constantly having to urinate even after voiding is a fairly frequent occurrance. I suffer from abdominal pain from time to time, occasionally severe, and am concerned that it indicates a recurrence of the scar tissue strangling my intestines but things eventually work out.

4 years down the road, would I do it again? In retrospect, it's very hard to say. The cancer appears to be gone and I look forward to my 5 year anniversary in December 2013, however, I struggle with the outcome of the course of treatment vs the ailment, i.e., which one will ultimately have turned out to do the most damage to my lifestyle and longevity?

In my case at least, the cancer and the aftermath of the treatment resulted in a very significant change in my life and it is something I am intermittently aware of every day. It has not been life-ending but it absolutely has been life-altering. With better post-op care, I believe that many of the complications might have been avoided but have no way to prove that. My recommendation - don't panic at the diagnosis, get multiple opinions and get educated! Once the surgery or radiation starts, you're committed. Good luck!

UPDATED

June 2014

Here I am, 5 1/2 years post op and I appear to be prostate cancer free. I've been told that there is no absolute assurance possible but that I should feel highly confident that the "beast" is gone.

It hasn't been an entirely untroubled recovery and I've had several setbacks over the last 5 years resulting from the radical prostatectomy, even though the cancer appears to be beaten. It appears that the internal abdominal scarring and associated tissue bands are likely to play havoc with my intestines and other organs for life - a high probability that I will have to receive more operations in the future to cut through these tissue bands when they strangle my intestines. Abdominal discomfort is a pretty constant companion these days and I often wonder when I will end up back on an operating table but that's something that I will simply have to learn to live with.

Don't read too much into this - if the choice was between an early, agonizing death or the side effects I have suffered and continue to live with, the result is a resounding vote for treatment. Regardless, the type of treatment and the venue are things I'd have to think very hard on before following the same path. Fortunately, options that may be available to my sons' some day may well make the challenges I've faced nothing more than a tale from the past, sort of like 8 track tapes, AM radio, and coin operated telephone booths. Let's hope that the business side of the medical profession doesn't win their quest to kill off PSA's and other routine testing. The choice to "kill the best" was mine and I don't regret making it. Good luck to you all!

UPDATED

December 2016

By way of update, I'm alive and well, still apparently cancer free. At the end of 8 years, my PSA remains near undetectable. I moved out of Virginia and after a two year stint in Massachusetts have now relocated to Arizona for work. It's a lot warmer in the winter and I don't have much yard work to do as only desert plants flourish here and they need little care. All in all, life is pretty good.

All of my previously reported complications resulting from the original Robotic Laparoscopic Prostatectomy remain but don't seem to be getting worse. One tidbit - my younger brother, lagging me by 3 years in age, popped up with a PCA diagnosis 3 years after I did. He also had a RLP operation (different hospital) but appears to have come through it without the complications that I experienced. I also recently discovered that an older uncle has advanced PCA so apparently it runs in my family. I continue to hope for a breakthrough so my sons and grandson never have to face the choices and challenges that so many of us have had to take on.

All the best to you and here's hoping 2017 brings the breakthrough that lets the surgeons put the knives away!

Steven's e-mail address is: movin4steve@gmail.com


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