On my way to the Doctor after having a genetic test done that seems the cancer is more aggressive than originally thought. My guess is he will take me out of Active Surveillance.
To be continued tomorrow.
Updating my situation. Went to the Dr. yesterday, August 10, 2015. My wife came with me.
My PSA went down from 5.6 to 4.8.
Dr. explained to us that I will eventually require surgery, because I have four positive cores and one "suspicious". That the decision is mine as to when and where. Scheduled another PSA check for January, and an MRI for March/April. If PSA is still on the downside or at least stable, and MRI does not show any significant change, we can go on that route.
My wife does not feel very comfortable about it. If it was for her, I would go to the OR this year. We are negotiating a truce, but we all know who rules in a household right? So, I do not think this year, but probably, next year, she is going to conspire with my adult children and they all are going to introduce me to our good friend Da Vinci. But for now, life goes on.
I'm going to take the new information to Dr. Alan Partin at Johns Hopkins in Baltimore. I got his second opinion last year and he was in agreement of AS, but that was before the MRI biopsy and the Onco type DX genetic test.
I will keep you guys posted.
I got an appointment to see Dr. Alan Partin at Johns Hopkins in Baltimore for October 10. It is not that they gave me that appointment so late in time, it was I who requested that date, since I don't work for Columbus day but they do. Tough luck for them. Besides, I'm on an impasse, my attending urologist wants to do a PSA in January'16. I already requested my biopsy be sent to JH too for a second opinion on the biopsy.
I think I'm going to turn my "second opinion" in my "first opinion" since there is no point in second-guessing my urologist and running to JH every time I need reassurance.
I was told that the Brady Urological Institute at JH is one of the best in the country (and the world) and is at less than one hour drive from my home, and I read in this forum about the JH services and Dr. Partin.
OK guys, this is the update.
I rescheduled my appointment for the second opinion with Dr. Partin at Johns Hopkins, because my wife has to travel abroad.
The reschedule date is September 14. Earlier today, September 10, I received a call from Johns Hopkins to tell me that the review of my biopsy done at JH upgraded my cancer. I am now Gleason 7 in one core with 80% and two Gleason 6 cores. I am no longer a candidate for Active Surveillance, and they told me that, because of that, I need to reschedule from a short "Second Opinion" consultation, to a full, lengthy Office visit if I wanted to get treatment with them. I did, and I have the appointment for the same date, September 14, but at an earlier time. I know it is going to be surgery because that's the treatment I chose, based on all the research I made, including this page. Also, Dr. Partin is second to none in the field, or first among equals, and an expert with the Da Vinci.
I also trust the pathology at JH since it is usually a world reference, with institutions from all over the world sending the slides for a second biopsy.
I will keep you posted of the new developments.
I had an appointment with Dr. Alan Partin of Johns Hopkins, and we set a surgery date for November 18, 2015. Dr. said cancer was upgraded to stage 2 and did not feel comfortable waiting beyond March 2016. Family insisted on doing it sooner, so date was set.
Even though Dr. Partin is a specialist with Da Vinci, he advised against it because he wants to feel the surroundings, so open it is.
Not much for now, I will contact the forum again after surgery.
Good luck to you all.
Hello guys and girls in the forum.
I got back home today, November 20, two days after surgery with Dr. Partin at Johns Hopkins.
Everything went well, not much pain, wearing catheter for the next few days. Waiting for the pathology report, but Dr. Partin said to my family that he did not expect many surprises.
Walked many laps in the hospital yesterday and today.
Thank you for this page. It helped me a lot.
I'll keep you updated.
11/21/2015 third day post-op. All is going fine. Catheter no issue. I have to struggle tore,ember I have it.
Beautiful sunny day in Maryland, and went fowok all twice. No troubles, I feel much better when I walk and am in movement than when I'm in bed.
Pain, on a scale 1 to 10, I would give it a 2, increases when I sneeze (Ouch!) or cough (Ouch Ouch).
Hi there, new updates on my part.
Pathological report confirmed biopsy results: Gleason 3+4, no extra capsular invasion.
Dr. Partin said is the best possible outcome and that I should celebrate.
I removed the catheter myself (with a little help from my wife), following the precise written directions by Dr. Partin. Piece of cake, nothing to be concerned about.
Wearing diapers and pads, because sometimes I can control it and others I can't. And I'm still bleeding.
Penis got really short. Nothing that I hadn't seen before because I've always been a grower. The difference is that now it doesn't grow, just the head and a little shaft is there. I have to sit to urinate first because I cannot control the stream, it goes everywhere, and second because, with such a small penis, and the impossibility to stretch it, it's challenging. Both my wife and I take it with humor.
Sex is nonexistent yet, but I'm still healing. When I'm OK I will start with penile rehab to see what happens, if any...
I had the staples removed today. No big deal. I don't have pains, my incontinence is minimal, my impotence is total but I haven't even started penile rehab yet. I don't even feel like I want to have sex, I'm still bleeding and leaking, so it is out of the question.
I would be ready to go back to work, but Dr. says it is too soon.
Penis shrunk, quite a bit, length and girth, and according to the nurse, it will be my new normal now. Not that I care much, nor my wife. We take it with humor.
Feeling too tired but I also knew was part of the combo.
This is an update of an update.
Everything was going well, until I began passing clots with urine. I advised the doctor (should have kept my mouth shut) and told me to go back to put a catheter again. So, here I am, with a catheter yet again, for ten days until 12/14, when they remove the catheter and will do a cystoscopy. After that, depending on the results, we'll see.
Meanwhile, catheter, bleeding from the penis, irritation and I believe a fungal infection in the penis, at least my wife claims it looks like a fungal infection. Scrotum is also red and rashy. I don't know why, but think it might be constant contact with bloody pads.
Hello people at the forum,
A new update.
27 days after surgery, I'm still wearing the catheter. They performed a cystoscopy on Monday and it showed that the internal stitches, those joining the urethra with the bladder, at least one of them has not healed, so I was free of the catheter for about 15 minutes, the time it took to prep and perform the cystoscopy.
But this time they also gave me a leg bag, so I came back to work in court, wearing the leg bag, which is a lot more comfortable.
I have to go back to JH on Monday, 12/21 for a new test (cystogram) to see if I'm finally off the catheter or back in.
Here are the latest development concerning my case:
2.5 month post surgery, I still have serious incontinence, and the stream is very weak. I consulted with my surgeon, and he referred me to his follow up Dr. To make the story short, I have a urethral stricture.
I'm scheduled for surgery to remove the scarring that is producing the stricture for March 10. The procedure is called DVIU (Direct Vision Internal Urethromy), after which I will have our good friend, the catheter, once more (it would be the fourth time since the operation I have a Foley in).
Doc says it is very uncommon, and not sure why it happens. Says the procedure is somewhat painful after you wake up from anesthesia, but it is better than dilation, and both have mixed results in the sense that it can return. I may also have to self catheterize for some time after it.
I haven't even tried sex yet. Not only the impotence is total, but even if we wanted to do some sex games without penetration, I'm an open faucet leaking urine all the time, my skin in the groin area is chafed and sore, I have recurrent fungus infections, and smelling of stale urine no matter how I clean myself. Sorry to be so graphic, but that's the way it is. Additionally, my penis is so small after surgery (it was on the small side before that), that my wife would have a hard time manipulating it (I do).
This is my update so far.
Greetings from Washington DC Metro area.
Nearly four months after surgery at Johns Hopkins on 11/18. Had several issues, the last one being a scarring in the urethra that caused a narrowing, leaking, etc.
Had a DVIU (Direct Vision Internal urethrotomy), fancy name to describe a procedure by which, through a cystoscope, they cut your scar and "open it up" again. That was done 3/10/16 and four days with a catheter.
Now cath is out, back to my "new" normal (wearing diapers, and pads, and changing them often), hoping that it eventually will improve. Once the urinary issue is being resolved, I will focus en bringing the "best friend" back to life, since it has none whatsoever, except to leak urine.
My first PSA three months after surgery was <.1 or undetectable. That's at least, good news.
Since my incontinence issue continues, and in a severe fashion, I contacted my surgeon, who said there might be a problem, and referred me to a neuro-urologist, a fancy name for a continence specialist.
To make the story short, it seems I am not going to get any better, so he advised me to insert an artificial sphincter to solve the problem. That means, another surgery. (That would be number 3).
I have to let a full year pass first, see it the scarring issue I had which required the second surgery doesn't come back (yes, it may come back), another cystoscopy, who knows what else, and then, by about Christmas (lovely), to the O.R. again.
This is life with the "good cancer" (you are lucky, my friends and family tell me, Pca is not as bad as others).
Hi there forum,
My two PSA, at three months and a year after RP was <.01 so that front is good.
ED is total. I haven't tried the injection, Cialis does nothing, and the pump is very awkward. Besides, I leak urine all the time. There is nothing to stop it, so it is a turn off. My wife did a few handjobs on a flaccid penis, but her hand ends up covered with urine, so it is not very pleasurable for her. I tried to make her think that before was semen, now is urine, but it is not the same.
I'm due for surgery February 8, 2017 for an Artificial Urinary sphincter implant. Dr. says now it's the only thing that can work to prevent my incontinence. The idea does not appeal to me, but having to change diapers every two hours or run the risk of wetting everything is even worse. i cannot even go to a social event for more than two hours without taking spare diapers, pads, cleanser, and spare pants just in case.
I keep you guys posted after surgery.
February 8, 2017 I was again at Johns Hopkins Hospital in Baltimore for an artificial urinary sphincter implant.
The operation went well, normal pain, one night at the hospital, back home, still resting because it's hard to seat, but feeling all right. For now, no leaking of urine but the device has not been activated yet. I have an appointment to have it activated on March 20 by my surgeon P.A.
I'm not wearing diapers, and almost no leaking, which is surprising because, if the device is not active, it is not supposed to be working, but the urology resident said it must be because of the inflammation after surgery.
Like I said, pain but no big deal, wearing a scrotal support helps with the pain.
Once the urinary leakage is solved, I will tackle ED. So far, 14 months after surgery, no response whatsoever.
Keep you posted a few days after activation.
Recovering from the implant surgery four weeks ago. Urinary sphincter to be activated March 20. In the meantime, everything remains the same, diapers, pads, etc. The only thing that changed was that I do not need to wear pads or diapers at night, but have to get up to go pee several times during the night, either because my bladder does not empty enough, or does not expand enough to hold urine.
The impotence department has not been addressed yet. Not until I stop peeing myself and everything that touches my penis.
A new update. Yesterday was the date when my artificial urinary sphincter (AMS 800) was activated.
Everything went well, the Physician assistant pushed the "magic button" and the device became activated. After that, she pushed the pump herself to show me how to do it and then had me do it myself. Then she told me to drink water, wait a few minutes, in the meantime she ordered a bladder sonogram to see if there were residual urine (there was), and had me pushed the pump again because she wanted to see the flow of urine.
Everything was good, I did not have any leaks yesterday or today. I'm wearing diapers today because I want to make sure I don't really need them, and it seems I don't. So far, after six hours after I got dressed, I remain dry.
Still learning how to manipulate the device, it is not as easy for me as it was for the physician assistant, she is more familiarized with it, but it will eventually become second nature on me.
Now, work on the ED field, which is more complex.
Until next update.
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