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View Full Version : My RRP experience - now 3 weeks after surgery


james_wv
08-15-2005, 07:28 PM
At long last here’s my RRP story. I’m sorry I didn’t get this posted before.

It’s been a while since my initial posts so I’ll backtrack to the beginning of my journey. In late May I had a routine physical with my family doctor. I asked for a PSA test; even though I’m only 48 and there’s no family history of prostate cancer and I had no symptoms. There is a lot of cancer of various types (stomach, liver, bladder, pancreas, lung) in my parents, aunts, uncles and grandmothers on both sides of my family.

The DRE was negative but the PSA was 4.7 and I was referred to a Urologist. His repeat test was 4.3 with 17% free PSA. He said his DRE felt some enlargement but nothing else. The 12 sample biopsy on 6/14 showed 2 samples positive (both on the right side, 20% and 22%) and 2 more suspicious on the left side. Gleason score was 3+3 = 6. PG measured at 69 cc with the ultrasound.

The Uro gave me some stuff to read and said to let him know what I wanted to do in a week. I found I had already read online everything that was in the pamphlets. After discussing things that evening with my wife I called back the next day to get the ball rolling. I had read a lot here and elsewhere about going to a major PC center, but decided that having my Uro do the surgery here in WV was the way to go. He has done 10-12 RRP’s per year for 15 years. He’s a professor of surgery and head of the Urology Dept at the local Med school. He (and his doctor brother) are friends of my wife’s going back about 25 years to their undergrad days. My family and friends are all here and would provide support for me and my wife during the surgery and afterwards.

Over the next 3 weeks, I:
gave 2 units of autologous blood;
convinced my family doctor I didn’t need another exam for surgical clearance since I had the full physical (including EKG and Chest X-Rays) in May, and he agreed and cleared me;
was pre-admitted to the hospital, including bloodwork, tour of post-surgery area and teaching about catheter care;.
took 2 business trips to DC;
saw my therapist twice, as we shifted from dealing with my recently-diagnosed ADD to dealing with cancer and its anxieties;
saw my Uro again who advised that nerve-sparing may not be possible due to location of positive samples and his hunch that there would be more cancer than the biopsy showed….after some discussion and soul-searching I told him to do what he thought best – just get all the cancer;
installed a cable modem/wireless gateway at home so my wife could work from home while I was recovering and I could when I was up to it;
purchased some hiking pants made of a parachute material and with zip off lower legs I saw a PCa survivor recommend. They worked great when I went to church or out to dinner.
purchased some ‘sleep pants’ made by Izod which served well for going out more casually. They have a soft drawstring waist and lots of leg room and looked like very thin and light sweatpants.

The week before surgery my wife, our Sheltie and I went to the beach for our already scheduled vacation. It was a great week of relaxation and not thinking about the next week. I checked in with my Uro twice with final questions. One interesting thing was when we went for massages. I checked the ‘cancer’ box on the health record form and my massage therapist said she was worried about massaging cancer patients since it would stimulate drainage in the lymph system. I told her that my Uro had said nothing about not getting massages and had said he would not take the lymph nodes based on my biopsy results and PSA score. She said she’d go ahead and I had an incredible 90 minute hot stone massage.

We drove home Saturday and I began my prep Sunday morning. 8 AM – Fleet Enema. 10 AM Magnesium Citrate. 1PM, 2 PM and 11 PM – 1 gram each Erythromycin and Neomycin. I had only clear foods all day – jello, chicken broth, decaf tea, cranberry juice, water.

Monday morning my wife and I made the 5 minute drive to the hospital just before 6AM. The morning was a blur of hugs, kisses, prayers, questions, IV insertion, epidural insertion and finally I was out of it. My surgery lasted a little less than 3 hours. All went well, and both units of blood were used. I had 8 family members and close friends in the waiting room and a few more dropped by during the morning while I was in surgery, mostly to comfort my mother. That wouldn’t have happened if I’d gone out of town.

I awoke in recovery with an incredibly dry mouth and a bladder spasm. I was given ice chips and a B&O suppository which helped a great deal. I needed these suppositories twice more during my hospital stay and they worked every time. After about 30 minutes I was taken to my room. The epidural was working well and I was feeling no pain.

I had visits from family and close friends and a soft meal for dinner. During the evening I felt pressure build up in my bladder and the nurse determined there was a clot and I needed irrigation. She gave my wife very detailed instructions as she went through the irrigation process in case she’d need to do it after I went home but luckily that was the only time it happened. From that point on I drank what seemed like gallons of water each day. I got out of bed that evening and moved to a recliner for about 30 minutes. That was a weird feeling, as the epidural caused the front half of my thighs to be numb but the back side was not. Due to some problems my roommate was having I didn’t sleep well at all that night.

Tuesday morning I had a soft breakfast which tasted REALLY good. I slept most of the morning. The epidural line was removed just before noon but didn’t fully wear off until the next morning. I was able to get up and walk in the hall twice. My Uro visited and told me he saw very little visible signs of cancer on the outside of the PG and he was able to spare the nerves on both sides. A nurse who felt sorry for me for my experience the night before got me moved to my own room and I had a much better night.

Wednesday morning my Uro came in early and when he heard I hadn’t had a bowel movement yet said he would recommend that I stay one more night. I got a Dulcolax suppository that morning and had a BM by lunchtime, but staying Wednesday night was a great thing. It gave me more opportunity to get used to the pain after the epidural totally wore off and to get up out of bed 3 more times and walk. I needed one Percocet for the pain that day, but never had another one. I had minor swelling of my scrotum and it didn’t really cause me any discomfort.

Thursday morning I went home by 10 AM. My only real discomfort was when I got up to walk around and/or empty my catheter bag and again when I sat back down. While I was sitting in my recliner I was in no real discomfort and I didn’t think the Percocets were needed just for getting up and down. I did use some Tylenol for that pain.

Since then I’ve been in my recliner most of the days with my laptop nearby. In the last 3 weeks, I went to Mass each Sunday with my wife, went to a funeral at my church on the Monday following my surgery, went out to dinner 5 times, went to 2 Marshall University football practices (3 hours out in the heat each time) and visited my mother-in-law in her personal care home twice. I also did about 10 hours of work for my job last week after remoting in to our network. I was bored silly and if I can surf the ‘net I can write a little Cold Fusion and do some database queries.

The staples came out a week and a day after surgery. The tape on my penis and catheter was also removed at that visit. The incision is healing well. I’m still having some blood in the catheter bag and there seems to be more if I’ve been more active. I started wearing jockey briefs that day to help stabilize the catheter tube and found that I needed to use panty liners to protect the briefs from the discharge that came out of the tip of my penis from time to time. I can’t tell yet if I’ve lost any flaccid penis length. I’m still taking the stool softener and have had only minor bowel difficulties one day.

The best news was the pathology report. The PG had a lot of PCa in the right lobe and very little on the left side. The margins, seminal vesicles and vas deferens were all clear and the Gleason score remained at 3+3 = 6. There was no sign of vascular involvement. The Uro did not remove the lymph nodes. The PG measured 59 cc.

My Uro believes in 3 weeks of catheter after RRP so I’ve still got it in. He claims to have never had a leaky bladder in an RRP patient in 15 years. My appointment is early Tuesday 8/16 to get it removed. I’ve got my pads and I’m ready for the next chapter. I also have some crib pads recommended by geifer, including one with little ducks and teddy bears. My Uro heads a Urodynamics center so if I have any ongoing continence problems I think I’m in good hands.

I apologize for the length of this, but I’ve learned so much from reading this board I thought I’d give some detail so the next RRP patient can hopefully gain something from it.
God bless you all.

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geifer
08-15-2005, 07:52 PM
Hi Jameswv This is geifer and we are really glad everything turned out so well for you. Being on the supportive end of this whole experience you sound just like my husband. He kept the cath in for four weeks just to be on the safe side ( it didn't bother him ) He did have a small amount of leaking for a few weeks but he is dry now so if it happens to you just be patient. He did his kegal exercises all the time he dosen't have the holding power he used to but if that is all that is wrong we are blessed. He just had his 5 month psa and it was 0.1 so we will take it. I am very happy for you and your family take care stay safe geifer :wave:

azguy2
08-15-2005, 10:01 PM
James, thanks for the update. I go in tomorrow for my biopsy. My PSA, age, and free PSA are a lot like yours. Can’t say I am not worried, I am. I am glad you are well on your way to recovery and your nerves were spared. My URO and GP both said I had a 30% chance of positive results and don't jump to conclusions yet.

james_wv
08-15-2005, 10:14 PM
God bless and best of luck AZguy2.

I defied the odds until it really counted....
Only 10% of prostate cancer cases in men under 50 - I'm 48.
Only 30-35% prob of PC with PSA in the 4's - I had 2 positive samples.

But then......
Partin probability of organ confinement 75-80%....AND IT WAS ORGAN CONFINED !!!

Good luck......

Liane
08-15-2005, 10:46 PM
Hi James--I was glad to read your story, and I think it will be a lot of useful information for guys just beginning the journey. It has been one year since my husband's surgery, and he had many struggles, and we thought some of the issues would never end, but for the most part he is recovered. In fact, as we speak he is kayaking for one week in a remote location. I never thought he'd have the confidence to do that! These updates are so important and appreciated.

Red68ranger
08-16-2005, 07:47 AM
Heck of a story James. We are all glad you are doing so well. The info will be invaluable to a lot of other people I'm sure. My only concern would have been your uro. Some of them have a lot more practice. Mine does 2-3 a week.

As for me, I go for my 4th 3-month checkup next month. So far I've had 3 with a 0.0 PSA. My cancer was organ confined and the nerve bundles were spared. In continence was not ever an issue for me thankfully and my potency has returned to maybe 60-75% of normal. None of the three major drugs has significant effects but the penile ring lets me achieve pretty much a full erection. God bless, and we do hope you continue to do well.

DB

james_wv
08-16-2005, 11:11 AM
An update - the catheter came out Tuesday morning - some slight discomfort (a burning feeling from the urethra for about 5 seconds). 3 weeks and a day after surgery and the 'ball and chain' is gone.

I'm sitting here in my Depends adjustable brief trying to feel when something wants to come out - a weird feeling. I've leaked a little as I walk around but also made it to the bathroom for a lot of peeing - it burned as it came through the irritated urethra.

I feel really good and confident already - if it doesn't rain I just might go to another Marshall football practice this afternoon - might as well take advantage of this time......

He said:
no heavy lifting for 3 more weeks;

take an antibiotic (Levaquin) for 3 days;

dress the incision daily (a small area came back open due to a little fluid
under the skin that needed to drain) until it heals completely;

I can drive when I feel like it;

even though the risk of clots is greatly diminished after last week, keep my legs up when sitting when practical - it couldn't hurt;

return to work when I feel like it (office environment - programming/database work). I'm targeting 8/29 to go back into the office (five weeks after surgery), but I'll work remotely from home this week. I could probably go in the week of 8/22, but our anniversary is 8/23 and we usually take some time off that week anyway.

azguy2
08-16-2005, 11:30 AM
Well James, I have one more thing in common with you. I also do software development. I also work remotely quite often. Countdown - 45 minutes till the Biopsy test, enamas taken 1 hour ago. This could be a life altering experiance again.

james_wv
08-16-2005, 12:13 PM
Good luck azguy2 - keep us posted. There's a lot of support and experience here to draw on. Whatever your outcome, knowing what's next and hearing a lot about it from those who've been through it makes it a LOT easier - there's so much less 'unknown' to worry about.

*tony*
03-21-2007, 09:57 AM
Liane;

You are a veteran member of this forum and have been posting since roughly the May2004 time frame. Since that time your hubby has been post-op for PC and doing pretty good.

I'm 7 weeks post-op and very slowly progressing. I'm just wondering if there's ever a time where you get to a point of acceptance and don't progress too much further with reagrd to ED and incontinence.

Any thoughts in this regard?

kennethpm
03-21-2007, 10:19 AM
Hi all:
I'm now 22 months post-op and thought I'd post an update. All PSA tests continue to be undetectable! Great news. I had the DaVinci RRLP procedure in NYC in May, 2005. I'm glad for the outcome, despite the fact that I'm still incontinent, and will probably remain so, the doctors tell me....<sigh>. I'm now looking into new devices and procedures to help with my daily use of 3-4 pads per day. ED is a factor also, but is slowly improving. I use injections of bi-mix and have good success with them, some slight success with Viagra & Levitra.
The recovery of continence is wierd. It either happens right away, or not at all, and in most cases, 6-12 months is the definite focal point for whether or not you're going to become continent or not. Erectile function, according to my ED doctor in NYC, starts to improve more dramatically 12-18 months after the surgery. But, I've heard of guys who've had remarkable success or recovery from ED, but it takes 4-5 years!
Well, that's it, for me. Glad I'm alive. The PCa is a nasty cancer, as you all know -- and if we can be cured of it, it's a good thing. Unfortunately, the side effects are especially difficult for men. Pay attention to your emotional health. I went through a major depression from 12-18 months post-op. At times, I thought about going over the balcony. Fortunately, good therapy helped immensely.
Ken in CA

 
 
 




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