james_wv

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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I'm not a doctor, just a guy who used to have a cancerous prostate....but I got over it...