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3 months post op RP. My thoughts and concerns.

Medic856
Posts: 2
Joined: Mar 2019

Hello all. My story. I had a younger brother that passed away at 55 from prostate cancer. I was 57 at the time. Even though my doctor was monitoring my PSA yearly, I requested more frequent checks. He agreed, and sure enough, my PSA started to slowly rise when I turned 60. Continued every 6 month checks, then when it hit 4.2, he referred me to a Urologist. More for my peace of mind than anything at that point. Initial check, urologist said wait 6 more months, then if number up then biopsy. so, 6 months passes then Bingo! Numbers jumped past 5. So now for the first biopsy. The fun one in the doctors office with the anal probe of pain. Lovely experience. Results came back positive for cancer in 3 samples. Told me over the phone! Guess I was expecting a face to face. So, he gives me options. I choose watchful waiting at his suggestion. No evidence of the same aggressive cancer that killed my brother. So we watch. And wait. 6 months later, another PSA. Number is up enough that now its time for an MRI, followed by another biopsy. This one will be done as an outpatient under anesthesia. Thankfully. So the result was more cancer, although it appeared contained. With one site close to a margin. Gleason of 7. Doc says its time to do something. No more waiting. Great! Meet with 2 radiation oncologists. Met with 3 surgeons at 2 hospitals. Checked references of all. Did a lot of homework about the treatment options. Read the book called "The Decision". I decided at that point that I wanted this crap out of me, so went for the Robotic Prostatectomy. For those of you that have had it, or are considering it, I will share my experience. Surgery was early, took about 3 hours. In my room by noon. Pain. Of course the dreaded catheter. And the abdominal drain. 5 holes and a 4 inch incision. Didn't do much that day but sleep and ask for pain meds. Doc comes in that night and says they feel that they got it all. Lymph nodes negative, they took 9. Some needed good news at that point.  Next day, up and walking. Carrying my new friend, the catheter bag full of bloody urine. What fun! So, they are ready to kick me out that afternoon. I didnt feel ready, but unless there is a complication, out you go! When the nurse pulled out the drain, it was the worst pain yet. Told the nurse what I thought of her pulling it out without a little warning that it was really painful.  Took a bit to get used to that catheter. I had it secured to my leg, but stilll need to be cautious to avoid snagging it while moving around.  10 days later, back at MD office for follow up and to get that nasty catheter out. That wasn't any fun either, but at least I was no longer tethered. Got the good news that all my margins and nodes were negative. Finally some good news! Now for PT to try and get the incontinence under control. That is an experience in itself. They will put electrodes in places you've never had them to check muscle tone and make sure you are doing the right exercises. I should mention that the physical therapy had started prior to the surgery. I have a female therapist, who is great. She really knows her stuff.  You should be prepared for some leakage. I am 3 months post op and still leak. My surgeon told me not to get discouraged. I have to allow a year, and if not better there are other options. It is quite frustrating. Especially since I am still working. I was out of work for 2 months. At 2 months post op, I went for my first PSA check. Went for blood draw, then had to wait a week for the results. My PSA is 0.00000. Thankfully. It makes the side effects somewhat more bearable. Thanks for reading my story. I will be glad to answer any questions about what I have been through.    

Clevelandguy
Posts: 392
Joined: Jun 2015

Hi Medic,

I remembered a lot of similarities in your descriptions of the surgery and the next day in the hospital.  Sounds like you are on the longer than you would like road to recovery.  The leakage thing should improve over time, it took me about 2 years to plateau out, some guys go quicker some longer. Keep doing the Kegals(I still do mine 4 yrs. later and only require a light pad/day). The ED hopefully will improve in about the same time frame, but some recover quicker than others.  Pray for continued zero future PSA tests, let us know if you need more help as there are a lot of good experienced people on this forum.

Dave 3+4

Georges Calvez
Posts: 176
Joined: Sep 2018

Hi there,

I would say that doing the Kegels yourself in any odd moment is good, I used to do them while lying in bed, watching TV, sitting in the car, etc.
I used to get a lot better, then hit a plateau for a month or two then a lot better again.
It is frustrating but you just have to keep plugging along.

Best wishes,

Georges

lighterwood67's picture
lighterwood67
Posts: 159
Joined: Feb 2018

Sounds like you are on the road to a good recovery.  I remember some of the issues you are talking about (blood and tissue in urine bag).  The physical therapist in my case put the probes up the rectum to check my kegels prior to surgery (scored a 4 out of 5).  She told me to keep doing what i am doing.  I have not been doing a lot of kegel exrecises lately, but I do walk 2 miles on a treadmill at a 5 and 7 degree incline everyday.  I do partner yoga (just staretd a month ago) with my wife.  I do core training with a yoga strap and exercise ball.  I lift some weights.  At this time, I have not worn any kind of pad for over 6 months now.  I am trying to get off the add-ons for ED.  In fact, I have not taken any Viagra or Cialis in over a month now.  My wife and I are still sexually active, whenever I can catch her, but she is awfully fast.  For your info, I am 68; Gleason 4+3=7; post-op this month 1 year.  More importantly my PSA is undetectable.  I go this month for my annual check-up.  Hope all goes well on your journey.

jmikew
Posts: 19
Joined: Jul 2012

...sounds very similar to my surgery.  With the exeception of the catheter.  I didn't go back in to have it removed since they told me I could take it out myself at home and when my 10 days were up i wanted it out.  Only problem was my wife...she couldn't understand why I would let her pull it out and got mad at me for doing it without her.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

Hi medic.  It sound like your medical team is doing all of the right stuff.  Some dribble at this point is not bad, and the kegels do help.

My DaVinci experience was similiar, except that I only had the cath 5 days (due to a holiday weekend coming up), and I never had an abdominal drain.

I am interested in your screen name. Are you an Army medic ?   I was a submariner myself, and in the Navy medics are called Corpsmen, of course.  Corpsman duty is independent on subs and most smaller ships, meaning that there is one one on the ship.  Very impressive guys, basically equivalent to both paramedics and RNs. And they have to undergo basic surgical training also.

max

Medic856
Posts: 2
Joined: Mar 2019

I am a medic. Not military, I wish I had taken that route. Current medic on a hospital medevac. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3186
Joined: May 2012

That is super work, thanks for what you do for people in extremely bad situations.

My cousin joined the Army for medic school in the late 70, as an E-1. Stationed around the world, eventually became a Warrant Officer, and then a commissioned officer. Sent by the Army through Physician's Assistant (P.A.) School.  Retired as a Captain or Lt Major, I forget which.    Since getting out of the Army, he has run two civilian medical clinics in the rural midwest for over a decade now.   Wow, he got his money's worth out of the Army, and them from him.

As I noted, sub duty as a corpsman on subs is independent duty. He is the only medical person on the ship.  Almost always a chief petty officer (E-7).  They 'have the load' by themselves.   SEAL teams are similiar, I have read at Wiki.  We had to helovac a kid with a severe injury off the boat once, from the North Sea. Our corpsman won a lot of 'chest salad' (ribbons) for that one, and deserved it all.

As a civilian I was "road kill" once. Ejected from auto via the driver window, and then the car rolled over me. Pumothorax, flail chest, 18 long bone fractures, including femur in 3 pieces.  Witness at scene said I was fould in a cemetery on my back, making gurguling noises.  My leg was under my back. They said my foot was under my neck.....   A week later, lung recollapsed, respriatory distress, a second vaccum line inserted, intubated for 16 days. I actually heard myself Coded over the intercom at that time.  Pulmonologist told my family the night the recollapse occured that "He will not live, just be ready. If somehow he does live, he will have severe brain damage."  Lead R.T. in the hospital told me months after I was discharged that my blood gases results "did not indicate life."  Despite severe vertigo for years, I ended up OK. I walk fine today, despite severe spinal damages.  I could not speak more than a word or two at a time for about six months, however.

Over a year of rehab before I could walk without a walker or quad cane.  I used County records to ID the paramedic on the truck that took me to the hospital, and thanked him and the driver.  In SC, one guy on a truck must be a paramedic, and the driver at least an EMT.  When my son was a Cub Scout, we took them for a field trip to see a Helovac operation in our county.

There are no "definitely dead" victims at an auto accident scene.  I was, but actually wasn't.

God bless,

max

jeffman
Posts: 19
Joined: Oct 2017

I agree with the drain pain. HORRIBLE. I was told there would be "a little pressure" and couldn't believe how much it hurt. But it didn't last long. After 8 days I was surprised how easy the catheter removal was, I just had my 18 month visit and PSA (every 4 months) still undetectable. I live 4 months at a time. I still wear a light pad every day and one at night. The night is an overabundance of caution. The day is due to stress incontinence. (which if I lost the gut and 50 pounds would probably improve or go away.)

We all handle membership in this club differently but we are here so might as well make the best of it. Welcom and good luck!

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