Introduction and questions

Tom welcome and great questions.  I am reasonably new and cannot answer all your questions.  One of the stage decision points is the result of the DRE, palpable or not.  If not stage 1x, if palpable stage 2x; where the x has other factors.  I had a blockage post biopsy and had to be cathed and it was a brief moment of intense pressure/ pain.  But that may be different post surgery.  

I loved and get your comment about runny at 25%.  I am convinced we need to slow things down to allow the information to really process before jumping into the solution. I would encourage you to keep asking questions.  I am heading to LA for the PC conference to help educate myself.  Most of the big docs are they're doing presentations and this is a patient focused conference so many of us will be there to connect with and learn from.  I wish you well. Denis  here is link to conference http://pcri.org/2017-conference/  

here is link to conference http://pcri.org/2017-conference/  

Hi Tom,

I had a RP DiVinci almost 3 yrs. ago and my PSA is still undetectable.  Your PSA should fall rapidly within the first six months.  If I remember correctly mine was undetectable at the first six month PSA test.  I was in the hospital overnight and went home the next day with the cath.  The cath is the worst part of the whole recovery/surgery thing.  I had no infections but the cath was very irritating at the tip of my member.  I used Neosporanin which helped but you will so glad when they pull it out in about 10 days.  I stayed inside while the cath was in and did laps every so often around the inside of my "track" in the house to keep the blood flowing. I was up and moving around eating, walking the next day after surgery.  I had some light pain in the groin/adomen area for a few days but nothing that Tylenol could not handle.  Once the cath was out I was told I could go back to work with no heavy lifting for a few weeks.

I was just so glad that the cancer was removed from my body(hope it stays that way).  The urine leakage started out about two pads a day and today I just wear a light Depends tucked in my normal underwear to catch the occasioanl drip after I pee or stretch a weird way.  ED is about 95% of normal, it took me about 1.5yrs. to get back to the 95% level.  From what I read here my results are somewhat typical, recovery does vary from person to person. One person here had a very bad reaction/results from a RP but it appears he is making some progress towards recovery.  Good luck, send me a Private Message if you want more detailed info.  Good luck.................

Dave 3+4

FloridaTom said:

Thanks!  I didn't even know

Thanks!  I didn't even know that conference existed.  Maybe next year?

 

-Tom

With all of the other guys, I welcome you Folorida Tom.  I note that your surgery is only two days from now.

My experience post-DaVinci was similiar to what Cleveland wrote earlier, so reread his post after mine, if you need a refresher.  You joinded here post-treatment-decision, which is rare but refreshing; it allows you to avoid the usual "Surgery vs. Radiation" brawls that so often occur.

PSA will plummet very rapidly after removal. I was tested at 3 months post-op undetectable.  Note that undetectable, depending on the test used and its sensitivity, is not necessarily all mathematical zeros.  I have been undetectable comming on 3 years, and none of my results did not have some figures to the right of the decimil point. But it is still clinically undetectable, and as such indicates full removal of all of the PCa.  Your doctor will explain this more fully.  By comparison, following radiation (even fully successful radiation) PSA ordinarily wanders about for a long time seeking a nadir, sometimes as long as two years.

Perineural invasion means that some PCa is detectable inside the sheathing or insulation around the nerves that pass through the gland.  It does not establish by itself whether PCa has in fact exited the gland along the nerves, but the pathology report post-op should answer that question.  Another thing that the pathology study will confirm is your Staging; increases from the Stage suggested by the biopsy is notuncommon, and in fact my staging was changed from t1 to t2 by the pathology report.

I was in very significant pain for maybe 3 days after surgery, but was walking the next morning, and go up and moved about a good deal from Day 1.  I do not think I took any narcotic after 3 days or so.   My cath was removed after 5 or 6 days, and is painless.  I wore a diaper 1.5 days, and never again needed one. I wore "pads" probably longer than necessary, at least several months, and "Liners" for very light episodes beyond.  In under a year my continence post op was BETTER than before surgery, because I had serious BPH for so many years earlier.  I am sure you have been trained in Kegel pelvic floor exercises.   But as Cleveland also noted, there are normal ranges for recovery; some few men fall well outside this common values, for a variety of reasons.

Potency returns more slowly than continence for around 100% of the writers here.  Begin cialias almost immediately post op, to retain blood flow in the vasculature.  This will reduce atrophy, but will not lead to erections.  Maintaining blood flow is critical in assisting toward long-term recovery.  Six months or more before spontaneous partial erections is not uncommon, and for many men it takes over a year.

Godspeed, and please let us know how it goes,

max

Also had Davinci RP just over a year ago. I had no pain at all afterward. Never took pain meds either. The catheter is always a nuisance to deal with, but I had already had many in over the course of a prostate infection. The most important thing about the Foley catheter like CG mentioned... Keep it sterile. During one of my Foley durations, it got infected and I was peeing a beige liquid mixed with excessive blood. So keep sterile wipes and like CG suggested Neosporin or some antiseptic to wipe down everything that is even close to the tip. I even used to wash out the leg bag and night bag and tubing with colloidal silver. 

So as long as the catheter is kept sterile, it is just a temporary nuisance.

Max is right, sometimes this forum is like the WWF. But we all are here to help, encourage or warn other guys, we just have taken different approaches from our different experiences.

One month after RP my PSA had fallen from 18 to 3, the result of residual antigen remaining. After six months it was undetectable and still is.

During my recovery there was no fatigue, no pain, no other residual side effects besides expected incontinence and ED. Take Depends along when Cath is pulled so you don't spray the office like I did after I got off the table. Incontinence is cleared up about 95% and ED is getting there too. 

BUT the one side effect that surprised everybody... Your business tool will be shortened by one to two inches. That has been the major complaint about some of the anti-RP guys, and it is bad news. When the prostate is removed a one or two inch section of the urethra goes with it. Then the remaining urethra is pulled up to reattach, shortening the penis by that much required to reattach.

I hope you are starting out with an acceptable size that you can lose a couple inches. It also affects the length of erections by a similar ratio. So... You have been warned. I am now uncircumcised, I actually have a foreskin now and that I do not like. Maybe there should be an option during RP that the surgeon can be a mohel and perform a circumcision during RP. 

But that is the worst of it for me, so all's well that ends well. 

Tom,

Best wishes for an eventless smooth and successful surgery. I was also 50 years old at my open surgery back in August of 2000. We have different starting diagnosis so that we cannot compare outcomes, however, from your shared info at your my page, I would think that you got a voluminous micrometastases case similar to mine. In answering your questions from my experiences;

1) The clinical stage is assumed/provided by the urologist based on findings from tests, biopsy results, DRE, image studies and experience of the doctor. Your data stages you at T2c. After RP, the analysis on the specimen (the gland, vesicles, nerve bundles and lymph nodes (if dissected) will confirm and provide the final pathological stage (this is the proper medical term) that will judge any future predictions.

2) PNI indicates that cancer was located at the nerves bundle. This is just an alarming flag to possible spread but not confirmed. Your worries are justified as this is known as the route taken by the bandit to travel out of the gland. They will refer to that in the upcoming pathological stage.

3) Our body takes about 10 days to clean circulating extra PSA serum. At 15 days post RP your PSA is already reliable for judgments. Many doctors wait one month to test the PSA and such is enough to verify the surgery success. The PSA should be less than 0.05 ng/ml.

4) Open surgeries requires longer periods of hospital stay. during my catheterization I never experienced pain caused by the catheter but I constantly used a cream at the tip of the penis to keep it moisturized. It was annoying to have something attached to my leg and the smell of urine, but I managed to take daily showers, walk at the hospital corridors and do little physicals. During the first three days I had to place the urine in a jar for analysis at the hospital laboratory (they controlled everything including my diet).

5) I never experienced fatigue but I had medicine tubes attached to my wrist, probably influencing my feelings. In the second day post operation I was already walking at the corridors pushing along a tripod with attached dripping medication and urine sac. I did that two times daily and felt great. My doctor recommends light physical exercises to the patients for full recovery. 

6) The time required to normalcy depends on the recovery process. DiVinci surgeries have faster recovery times. Your doctor will tell you about your conditions.

Best wishes and luck,

VGama

Good luck!

I hope it goes well. When you are recovering TAKE IT EASY. It is very easy to overdo it and tire yourself out. Keep hydrated, keep popping those laxitives and pain killers and watch your wounds - you may need dressing if they weep. One thing to truly truly look forward to is the removal of your catheter. After two weeks on that damn thing losing it beats coke and hookers hands down for the sheer joy of living :)

@Grinder - you are right about soft length but I found Mr Happy was not far off his original dimensions but I have lost a lot of weight so that factors in. I'm seeing my ED chap fairly soon - will report back any useful information.

C

Tom,

Sorry to hear of your situation.  You are at the right place to get info as to how our situations are going.  By noiw, you should be home and feeling better.  

I was diagnosed 4 years ago last week. (Aug 2013).  I had no symptoms.  When found, totally by accident, I had a PSA pf 69.  Had biopsy, and found Glearson 3+4 -7. I, like you, opted for the robotic surgery.  I wanted the cancer removed.  Had PR (DaVinci) December 2013. Surgery took 5 1/2 hours becasue of complications from hernia mesh and muscle development.   My PSA fell very rapidly.  I was at <0.010 for almost 3 years.  I was on Lupron for two full years.  That sucked. They had my testosterone down to 17.   I had 8 weeks, 5 days per week, of follow up radiation.  After I went off the Lupron my PSA stayed down a <0.010 for 6 months,  Then as my testosterone started to come up my PSA made slight increases.  I am over 4 years post diagnosis, my Testosterone is back up to "normal" and my PSA was still under 1.  It was around 0.345, 4 months ago.  I have more blood work this coming week (Sept 5->).  The hope is that my PSA will have settled in under 1.  If not, I will have to go back on intermitent Lupron or some other drug my doctor has talked about.  After surgery, the report was that I had 40% involvment, and there was one very small spot in one lymph node.  It was so small that it hadn't shown up in my MRI's.  So far, 4 year later, my scans are still clear.  

As to exercies, My doctors had me on a tread mill two days after surgery.  Not running, but walking.  I was to stay off my Pro Spinner Bike for 8 weeks, but Dr. "M" said I could get back on my bike after 6 weeks becasue of my progress. I had been a hard core road cyclist.    Weight lifting was OK after three weeks.   As Georeg G said "Let Pain be your guide",  I had no pain post surgery.  They gave me some pain meds, but I never used it.  I think it was Trylenol with Codine.

Catheter?  As has been said, more of a inconvenience than painful. When I went to Doctors appointments, I put the Catheter bag in a State Liquor Store bag.  That got plenty of laughs from doctors and nurses.  My GP (former student of mine) had some joint surgery and had a catheter.  Well, Dr. "B" told me that removing the catheter was very painful for him.  So, going by what he said, the day I went to have the catheter removed, I took 2 of those Codine Tylenol pills.  By the time my wife drove me to the doctors, I was in La La Land.  Walked in the doctors place sort of laughing, carrying my catheter bag in a Liquor Store Bag.  The folks in the waiting area were laughing, as was the staff.  The nurse came to the door and started to laugh and called me in.  We got in the room, I got undressed and on the table.  She was getting stuff ready and I was laughing.  I told her I had taken those pills.  She laughed.  So, as we are talking, I said Well, let's get this over with.  She held the catheter up and it was already removed.  I didn't feel a thing. To this day the staff laughs about that and teases me about taking the pain med.  Dr. "M" really teased me.  I'm glad I got to make some people laugh, and the laughter helped me as well. 

I had some leakage problems.  I was still wearing pads, just in case up to 2 weeks ago.  As a result of my surgery, becasue of my muscle development in my thighs, from the road cycling, my doctors had trouble finding the lymph nodes in my right thigh/groin area.  They finally got them, and had the robot do a mirror image which got them right to the lymph nodes in the left side. As a result, I was told this the night of the surgery when my surgeon came in at 10PM to check on me, I developed a hernia and a benign tumor in that groin area.  It was because of brusing during the surger.  It was becasue they were in that right side for a long period of time.  So, this past early spring, that Hernia acted up.  Went in to ER at 3AM. Different surgeon Dr. "H" came in at 4AM ready to do the surgery, but he got the hernia back in and I had surgey two days later. Dr. "H" wanted to have his own staff assist, which in understood completely. Dr. "M" insisted on only the exact staff he worked with were available for my robotic surgey as well.   Hernia is fixed and tumor is gone.  Result, pressure on bladder and nerves has gone away and my bladder control is back to normal.

So, Hang in there Tom.  Your life will change, but it will improve.  Best wishes and know that you are in my thoughts and prayers.  Listen to yoru doctors orders, and I will tell you this-----

DO YOUR KEGELS.   That's after the catheter is out.  I was warned not to do Kegels with the catheter in.

Love, Peace and God Bless

Will

Any RP guy is subjected to such experience. Infection or inflammation is common so that the need for a post op careful recuperating period (at home or at the hospital). I think that those in robotic RP are more prone to such pain and nasty effects/experience as they go home earlier. Open surgeries require longer periods of medication so that one may not feel the same, however, we all recuperate to normalcy.

In your shoes I would stay in the hospital as longer as you are allowed because your follow up treatment got more attentive eyes and hands caring the issues. The medication will treat your situation but it will also influence in the PSA results. Better to wait one month for a trustful test. Try keeping the tip of the penis lubricated.

Best wishes for fast improvements.

VG

Besides kegels after the Cath is removed get yourself a good vacuum pump. My urologist insisted I get one, not to get and maintain erections, but to draw blood into the corpus cavernosa and spongiosum. This will help substantially in penile rehabilitation. In my experience, it doesn't make for good woodies anyway. But eventually, if your business tool is rehabilitated, it will resume getting hard and not just big and floppy. 

I don't know why some guys lose a lot more length in RP than others, unless the bigger the prostate the more urethra is cut. One gentleman on this forum claims he has nothing more than a "bellybutton" left where his business tool used to be. I have no reason to doubt him, but I would have liked to know why it how it happened. If I had been in this forum and read his account of his experience BEFORE I had my RP, it may have caused me a lot of reservations. Fortunately I did not know about this forum at the time so I was full throttle going in and it has been a lifesaver for me. I only stay on this forum now because I want to encourage guys to seek out the best procedure available for their particular profile.

I had RP done because a friend had it done and strongly recommended it. I am glad he did. Also, my neighbor across the street died of it because he did not know he had it in time to successfully treat it, and he warned all friends and family not to hesitate to get checked and treated.

So yes, I will be hanging around here pushing guys to get checked and treated with the appropriate procedure, and good for you Tom... Better to be taking antibiotics and dealing with a catheter and even lose an inch or two of your business tool than to be six feet under and your widow crying over your grave, just before she sells the house because the memories are too painful of your early departure.

Some day I am going to post a little profile and short history of my neighbor. It will make us survivors feel a lot more blessed to have as many alternatives that are available.