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Posted 7/31/2009 6:05 AM (GMT 0)
In another thread brainsurgeon posted as follows:

Greetings to all. Found this great forum a few days ago on my 3 week post op anniversary from RALP. I could not be happier with the procedure and doctor. Also happy with the results of the path. report. As a general surgery resident many years ago, I did several radical retropubic prostate removals. Boy! Things have changed! I had one neurovascular bundle spared, and to my pleasant surprise, I am now experiencing some tumescence. Time will tell.
Downside? I have some stretch injury to nerves to right thigh, but this is resolving rapidly. Good luck to all!

70 years old USA citizen
Prostatic carcinoma dxed June 2009 by PSA and then Bx
PSAs yearly since 2001 ranged 1.52 to 7.0
Neg. CT and BS
Gleason Score 3+4=7
Robotic assisted total prostatectomy and node excision July 2009 in Luzern, Switzerland
pT2c G3 pN0 (0/14)
Catheter out in 5 days (home in 3 days)
No incontinence
Potency: beginning tumescence??? at 3 weeks post-op
Posted 7/31/2009 6:15 AM (GMT 0)
Hello brainsurgeon,
Welcome to HealingWell. I will defer any technical talk on surgery to you doctor. I can say I have a distinct memory of my left leg losing some lateral movement for a few days after surgery. if it hung over the bed I had to pick it up to move it on the bed. But that is a distant memory. All is well now. My RALP was done at the City of Hope by a very well prepared surgeon and things did go well from the surgery. The darn pathology was a mess, but I am quite well after two and a half years. While I was in the recovery room I was observed having an "engorgement" around the catheter, but i claim to have no dreams and no memory of such things. :-)

Again welcome to a truly fantastic site. There are some great folks here that will cheer each phase of your recovery. I also expect to see some great PSA tests for you soon...

Tony
Posted 7/31/2009 2:29 PM (GMT 0)
I knew that I couldn't be the only one with leg problems. As a neurosurgeon, I have seen a fair number of cases of neurapraxia in other parts of the body, so I made my own DX. Seven hours in one position is a long time. My surgeon has 200+ cases under his belt and is a big believer in getting nodes out (14 in my case). He says that even with a negative bone and CT scan, there is about 25% microscopic lymph node involvement not found until node microscopy.

I don't need to tell you how fortunate you are. In my judgment, young age and PC don't go together well. We both have dodged a bullet. GOOD LUCK to you.
Posted 7/31/2009 3:05 PM (GMT 0)
Hello and welcome, Doctor. So glad you found our part our part of the world and decided to join our happy brotherhood. Sounds like you are doing pretty good. Please keep us posted and hope you continue on with us.

David in SC
Posted 7/31/2009 4:09 PM (GMT 0)
In my case, ten nodes tested clean (6 left, 4 right). Still my medical team and I both felt that we weren't through. But like I said, and my numbers show, I am doing well and now work in prostate cancer advocacy and support. It's been quite a ride! None the less, I am a student of my own experience with prostate cancer, and know we have chosen a well assessed protocol.

Keep us posted on your progress.

Tony
Posted 7/31/2009 6:35 PM (GMT 0)
Welcome to the Forum Doc. I have visited Luzern and its a beautiful place to be at for your recovery.
Posted 7/31/2009 9:38 PM (GMT 0)
Hello Doc. Welcome to the club no one wants to belong to. Sounds like you are well on the road to total recovery and PCa being a blip on the road of life. A big blip mind you, but nevertheless a blip.

As a writer of stories I live a rich fantasy life that involves no Victoria Secret models. Not that I can't have such fantasies, it's just I can project into a scene based on an old beer can and a pencil. The possibilities of a U.S. brain surgeon winding up in Switzerland at 70 are ripe with possibilities. Perhaps someday, once you get to know us, you'll share the story. And, if it's a good one, I'll write it, and sell it, changing just enough to keep you from suing for a share of the royalties.

By the way, it's a joy to have someone here who can use "neurapraxia" and "tumescence" in the same post. I've learned two great words. Thank you.

I hope you'll keep posting and report on your progess. However, with no incontinence and beginning tumescence at 3 weeks post-op I imagine the next report will be that your climbing the Matterhorn at five weeks. You join Tony, with his 'engogement' in the recovery room, as being the bench mark twins for the rest of us.

Sheldon AKA Sleepless
Posted 7/31/2009 9:46 PM (GMT 0)
Welcome Doc, sorry you had to join us but glad to have you. Best of luck in your recovery.
Posted 8/2/2009 2:29 AM (GMT 0)

Welcome to this forum, I hope you stick around for a while, having a "real doctor" talk about recovery might be enlightening for all of us.

I have one question.  Do you live in Switzerland, or did you go there for your surgery?  I have one friend in his 70's who traveled to Europe for surgery, when his docs in America wanted to do radiation.  He is doing quite well three years later.

Posted 8/3/2009 3:35 PM (GMT 0)
I have one question. Do you live in Switzerland, or did you go there for your surgery? I have one friend in his 70's who traveled to Europe for surgery, when his docs in America wanted to do radiation. He is doing quite well three years later.

Yes and no. I live here about 9 months a year and back in the USA in summers (not this one however). There are a half dozen or so da Vinci surgeons here, and I was lucky to find one in Luzern who had done extensive training in France (100 cases), been here about 10 months (80 cases), and was/is a superlative doctor in dealing with an MD patient (not very easy). He spent over an hour answering questions that I had before I asked them. He has his own team for every case, does them first thing in the AM, and does one case a day. My surgery was long (7 hours). Half that time he spent on node removal. He then took a quick break for some Linzer Torte (a wonderful Austrian cake) and then finished without being low on blood sugar. I used to do this with long cases too, but I used peanut butter.

I was amazed at how after seven hours of anesthesia, I had no soreness in the lips, tongue, etc. The pre and postop followup was excellent.

Cost wise, I could have saved money in the USA with medicare, but I am glad that I had it here withing twenty minutes of home.
Posted 8/4/2009 10:50 AM (GMT 0)

Greetings, brainsurgeon.  Welcome to the forum.  I'm sorry you have to be here but appreciate your joining in.  I'm jealous of your ability to recover in beautiful Switzerland.  It is a beautiful country - we lived in Southern Germany for 3 years and it too was a beautiful place.  I also agree that it is good to have surgery close to home.  I live in Virginia and several colleagues said I should go to John Hopkins in Baltimore since they are a leading center and have several reputable doc's.  I said I am happy with the medical team I have here and have great confidence in them AND my family is here and can give me much more support from here. 

One question based on what you said earlier about lymph nodes.  I had the open surgery and my doc said as he looked around he didn't see any need to take any lymph nodes.  As it turned out, I got a good pathology report but I have had that little thought in the back of my mind about lymph nodes and should any of them have been tested.  I have great confidence in my doc so haven't thought too much about it, but since the question came up, thought I would ask.  Once again, welcome to the forum.  David

Posted 8/4/2009 12:49 PM (GMT 0)
Welcome Dr. Sounds like your on your way to recovery...
Posted 8/4/2009 7:21 PM (GMT 0)

CPA said...
Greetings, brainsurgeon. Welcome to the forum. I'm sorry you have to be here but appreciate your joining in. I'm jealous of your ability to recover in beautiful Switzerland. It is a beautiful country - we lived in Southern Germany for 3 years and it too was a beautiful place. I also agree that it is good to have surgery close to home. I live in Virginia and several colleagues said I should go to John Hopkins in Baltimore since they are a leading center and have several reputable doc's. I said I am happy with the medical team I have here and have great confidence in them AND my family is here and can give me much more support from here.

One question based on what you said earlier about lymph nodes. I had the open surgery and my doc said as he looked around he didn't see any need to take any lymph nodes. As it turned out, I got a good pathology report but I have had that little thought in the back of my mind about lymph nodes and should any of them have been tested. I have great confidence in my doc so haven't thought too much about it, but since the question came up, thought I would ask. Once again, welcome to the forum. David

David,
We enjoy Switzerland and Germany too. It is fun to go and practice our terrible German with them. They take it well, but often one speaks in German to be answered in English. The Germans like to practice too.

about the nodes. There is no substitute for being there and eyeballing the nodes. My doc is an academic and collecting cases for publication. His theory is that even with a negative CT and BS for external spread, there is about a 25% chance of their being microscopic tumor in the nodes. He took 14 nodes from both sides. I think this is on the high side from what I have read here, but that is OK with me. In your situation, it would seem that you are in the 75% WITHOUT micro spread to the nodes. You seem to have a favorable followup, so it sounds like the Force is with you!
Posted 8/4/2009 7:34 PM (GMT 0)
Hey Brainsurgeon, nice to see you back. I've been wondering how you're doing ---- in part because I too had 4 cores positive, a 3 + 4 Gleason and robotic prostatectomy just about when you must have. But, I had tumor on both sides, and as far as no incontinence or turmescence --- well, you're outdistancing me there, that's for sure!

Be well and keep in touch,

Sheldon AKA Sleepless
Posted 8/4/2009 7:46 PM (GMT 0)
Brainsurgeon,
There is a much better way to determine lymph node involvement. The Combidex MRI, which is only available in Holland. It has a 96% accuracy rate confirmed by dissections after the fact from a trial in Holland and Germany. It's non invasive and more accurate than surgical removal because it examines all the lymph nodes, not just a sample.
It uses an IV of iron oxide nano particles and any infected node is unable to absorbe the particles because of their shape. If the MRI sees a node with no particles it is because it has PC cells in it.
JohnT
Posted 8/4/2009 8:27 PM (GMT 0)

Hello brainsurgeon,

Glad to see you're doing well. I hope you will stay and keep us informed on your progress...a unique perspective, particularly being a doctor and a patient. 

Significant tumescence is something many of us here seek (I did have to look it up).

I have been to southern Germany. Some beautiful countryside there.

Good luck with your recovery.

Mike 

Posted 8/4/2009 10:08 PM (GMT 0)
Thanks, Doc.  Appreciate the info.  I do have great confidence in my surgeon so I believe he did all the right things.  David

Posted 8/5/2009 5:07 AM (GMT 0)

Sleepless09 said...
Hey Brainsurgeon, nice to see you back. I've been wondering how you're doing ---- in part because I too had 4 cores positive, a 3 + 4 Gleason and robotic prostatectomy just about when you must have. But, I had tumor on both sides, and as far as no incontinence or turmescence --- well, you're outdistancing me there, that's for sure!

Be well and keep in touch,

Sheldon AKA Sleepless

Sheldon, I am a month post-op today. In my case, I would say the operation was a piece of cake, BUT the stretch injury to my lumbo sacral nerve plexus has been the dickens. The paresthesias and quadriceps weakness on the right have made me pay a lot of attention. This is resolving, so I am encouraged. While i was tap dancing on the patio night before last (joking), I took a couple of unscheduled bows and wound up on the old buttlocks. Scared me and my wife but only the dignity suffered.

BTW, I believe that on the final path, I had disease on both sides of the gland (pT2c). The Bx cores were only positive on the right though. On the no incontinence, I'll have to say that I do lose a squirt or two into a pad on occasion. Sometimes just from rising from a sitting position and usually toward the end of the day. I am certainly not ready to put on my Speedo suit yet.

I figure that we are just early in recovery now. I'd say that my experience has been 5% surgery and 95% nerve damage now. Still, I'd do it again in a New York minute, and I look forward to my PSA in 60 days. Stay well and healing!
Posted 8/5/2009 5:21 AM (GMT 0)

John T said...
Brainsurgeon,
There is a much better way to determine lymph node involvement. The Combidex MRI, which is only available in Holland. It has a 96% accuracy rate confirmed by dissections after the fact from a trial in Holland and Germany. It's non invasive and more accurate than surgical removal because it examines all the lymph nodes, not just a sample.
It uses an IV of iron oxide nano particles and any infected node is unable to absorbe the particles because of their shape. If the MRI sees a node with no particles it is because it has PC cells in it.
JohnT

Now, that is worth knowing. Wish I had had that before. I did find this quote though:

This study seems to demonstrate the dilemma that is presented by the use of ferumoxtran-10, and may explain why it has not yet been approved by the US Food & Drug Administration. There was a 24.1 percent false positive rate in this study, leading to unnecessary surgical intervention. That is a high false positive rate for a diagnostic test that is going to lead to any form of serious interventional treatment.

Looks like the devil can be in the details here. I wonder what scans look like post-op and how long after? Also, would surgical clips left behind be a problem with the MRI? nono
Posted 8/5/2009 2:27 PM (GMT 0)
hi Dr. barin,
I saw that quote as well, and the study on Combidex. But I always wonder what's worse: a false positive, or a false negative? Regardless, I had MRI following surgery, and they saw them in the image but no harm.

On your comment to Sheldon,
Surgery does have the distinct advantage of location far more tumor than biopsy does. And while biopsy saw tumor on both sides of my prostate, surgery identified the breach in the prostate and a more aggressive disease. But my recovery was similar to yours. 5% surgery, 95% nerves. I walked it out though. I am fully recovered from both. It was within a month after surgery that I was good with the surgery.

Stay well...happy healing,

Tony
Posted 8/5/2009 5:38 PM (GMT 0)
Brain Surgeon,
Article on LancetOncol 2008:9:850-56 Summarizes the trial.
Any Scanning technology is highly dependent on the skill of the radiologist reading the scans. Dr Barantsz who developed the test personally reads all scans and they are reviewed by another experienced radiologist. Differences are reconciled. In talking to Dr Barantsz I believe the false positives have been reduced significantly over the past three years. If the scan is clear there is only a 4% chance of it missing something. If a node is found positive there is a 5 level scale of LOS (Level of Suspicion). There can be a fairly accurate determination because all information such as LOS, the location of the node and number of nodes suspected is taken into account.
JohnT
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