Well, It's May 2nd. Eleven days since my diagnosis.
I found out the day before my birthday. Probably the lowest point of my life but actually relieved the wait was over. My Urologist wanted to wait three weeks to give me the news and my calls to get some relief went unanswered. We were pissed to say the least. I knew the answer going in would be cancer because the Dr. said he would call if everything was O.K.
After a week I knew it wasn't going to be good so I started preparing by reading everything I could find. A lot of stuff out there but, knowledge is power.
(The wife speaking - These 2 ½ weeks were like the worst roller coaster ride in the world. One day I was feeling like the world was about to end and the next I was convincing myself that Joe was absolutely fine - I was just over reacting. When we finally got the diagnosis - my heart broke. No matter what you think, you are not prepared to hear - "you have cancer" -- and trust me when the person you have lived with for the last 19 years gets told they have cancer - you have it too.)
Thanks to Dr. David Kaproth here in Tallahassee. (wife - We owe Joe's family practitioner a fruit basket - to say the least) At age 40 He started the dreaded DRE (Digital Rectal Examination) and along with it, the PSA test. The Doc said," Your PSA has gone from 2.2 to 3.5 in just over a year, I want to refer you to a Urologist just to make sure its not Cancer. It's probably just BPH (Benign Prostate Hyperplasia)." My Dad has BPH so I shrugged it off and went on to the Urologist.
A week later the Urologist does another DRE right in front of the wife and says he feels a little enlargement but then tells us well, with your PSA jump you have a 30-40% chance of cancer.(wife-Just slightly embarrassing for me and the hubby) WHOA! O.K. now we starting to panic. A Biopsy is scheduled a week away.
I go in for the biopsy. Prepped and laying on my side on the table. The nurse tries to comfort me, but it didn't do much. I'm laying on my side with the death grip on the table waiting for the Doc who comes in and says," Hello this is Miss. (I don't remember, just a pretty 21 year old blonde that I sure as hell wasn't expecting) she's a Med student who will be observing your procedure." A bunch of KY for Ultra sound insertion, a shot of Lanacaine and 12 cores later 1,2,3, I'm counting every one. I'm done. I didn't even get a spanking from our young observer. Oh well. I asked her if she learned a lot. She said, she did.
The Doc tells me he didn't find anything alarming and he'd bet there wasn't anything there. He'd call if it turned up negative. All that did is make me wait by the phone for my call. (wife - more roller coasters -- I had to buy water proof mascara for this wait) My results were received by the docs office in three days (of course we didn't know that until 2 weeks later). I got the call the doctor promised -- unfortunately it was to reschedule my appointment for another two weeks out. (wife - more roller coasters and mascara and tissue) I called back and said I'm waiting to find out if I've got cancer, somebody needs to talk to me. The nurse finally returned my calls after 5 days later and got me in three days earlier than they wanted. (wife - nervous wreck at this point)
I was prepared as I could be for my cancer diagnosis. (wife- I was not prepared - Joe tried to help prepare me -- but I refused to "give in" to "negative" thoughts.) The emotional rollercoaster was awful. (wife - like I said - rollercoaster, waterproof mascara, tissue and nausea medicine) Sad, Mad, Scared then back again. I found YANA a few days later. Reading the stories of all these guys like me was comforting and gave me hope. Thanks to everyone here. (wife- I still have a hard time reading the stories -- I guess it is that little thing called denial)
My wife has been my Rock she went right to work on getting us a second opinion. (wife - I damn sure wasn't gonna let a doctor that didn't respect us enough to tell us the news as soon as possible cut on my husband.) The search for the best surgeon in Florida that we could find had begun. She called our friend Dr. Jim Andriole. He told us his brother, Dr. Jerry Andriole, was a Urologist in St Louis and we should talk to him because he knew all the best Urologist across the country. Dr Jerry assured us that my path. report suggested that I was indeed in the early stages. He recommended two Surgeons here in Florida he felt were the best. Dr. Julio Pow-Sang at Moffitt Cancer Center, Tampa and Dr. Patel in Orlando. Dr. Pow Sang was covered under our insurance so we sent a message to Dr Pow-Sang.
Even though he was out of town at a meeting - Dr. Pow-Sang called us himself and urged us to come down to see him on Friday May 1st. We got our appointment and went down to see him. We were treated nicely by the staff at Moffitt and when we sat down with Dr. Pow-Sang we were impressed with him. He seemed very genuine in his demeanour. He answered all our questions and explained everything by drawing pictures as he talked. He told us that although he had done many LRP's (laparoscopic radical prostatectomies) he now preferred the RALP (Robotic Assisted Laparoscopic Surgery) he said that the robot helped the skilled surgeon by making a long surgery less tiring. It eliminated any shaking a human might have in his movements. He explained that the hot knife wasn't used around the nerves and blood vessels. He could use other various tools. Also, that with my age and fitness I should recover continence shortly after surgery and erectile function should be back in three months. Will see. I'm hopeful. So we were comfortable with him and the procedure. We have scheduled my surgery for June the 4th. I feel I have made the right choice for me and am confident that I will make a full recovery in short order. (wife - I am feeling a little more relief now that we have a plan of action - and I feel very confident that the cancer will be out of Joe soon - I don't really care if he is in diapers for the rest of our life or can't have "traditional" sex - I just want him here with me! And things look really good right now) I will try to update again just before surgery or just after. (wife- thanks to everyone that makes this site possible and to those of you that share your stories - you are helping others get through this very scary time in their life.)
June 1 2009: Went to Moffitt for all the Pre-op paper work. We met all the Anesthiology staff. They were very nice and tried to make us feel at ease. (The wife- the anesthesia part probably had me more scared than any of this...since Joe has barely had a cold since he had his tonsils removed at age 6 or 7. I wasn't sure how he would respond to all that medication. And I have heard and seen too many horror stories about young, healthy people not waking up from surgery -- I know I am paranoid - I can't help it. I tell you what though - the anesthesia team at Moffitt was a dream come true. They were kind and caring - and put up with me with the "20 question game". Dr. Escher was especially kind - I owe him a debt of gratitude for calming my nerves.)
June 3 2009: Loaded up the truck and headed back down to Tampa to stay with family before the big day. Nothing to eat just clear liquids all day. (wife - I felt so bad that Joe couldn't eat; I didn't make him stop at either of our favorite restaurants. Boy that hamburger and Cuban sandwich sure did make my stomach growl as we drove by. Well if I am really being honest - I don't think I could have eaten if we had stop - my stomach was in knots. By the time we got to Tampa my dear, wonderful Aunt fixed Joe more liquids than I think is possible to down in one evening. For dinner Joe got red jello, green jello, beef broth, chicken broth...and all the tea he could drink. At that point I figured that if I didn't eat I wouldn't last through the procedure - it had nothing to do with the fact that my Aunt is a fabulous cook.)
June 4: Headed over to Moffit at 4:30 a.m. so we could check in by 5:15 a.m. (wife - notice he didn't say we got any sleep the night before, that wasn't a mistake. I think I did get an hour or so between midnight and 2 a.m. - I don't think Joe got any sleep - but as he said he would get to sleep for several hours during surgery) We got the paper work done and I left my wife, daughter and sister-in-law in the waiting room and headed to pre-op. (wife - hurry and wait - hurry wait - arrrrgh!) I put on my hospital garb, got my IV, and met the nurse anesthetist (CRNA). The family was asked to come on back for the last good-byes before surgery. Dr Pow-Sang came by and asked me how I was doing. I told him I was fine I was more concerned about how he was doing. He jokingly responded that his stay at the party the night before was short and he got home early. We all laughed. The CRNA gave me some feel good drugs and I went bye-bye.(wife- And then the waiting began ...I knew the surgery was going to take about 4 hours - so I was prepared to wait- kept wondering why I didn't get my doctor to give me a prescription for Valium or Xanax or something. Yes, I did get teary eyed - even though I knew he was in great hands. The doctors, nurses, and staff at Moffitt were so kind to me. They could tell I was terrified, so they ended up giving me as much or more reassurance than they were giving Joe. One of the surgical assistants actually called me a few times during the procedure so that I knew everything was progressing fine.) Next thing I remember was waking up in post-op with what seemed to be,(from my YANA education)intense bladder pain from spasms. I told the nurses I was hurting and they gave me some bladder spasm drugs and another dose of morphine and I checked out again. I came to again and told them I was still hurting some and they gave me another dose of morphine. They told me I still wasn't given the limit on the morphine so I guess they were just trying to see how little I could get away with. (wife - Dr. Pow-Sang came out to let us know the surgery was a success - he was pretty confident that he got it all and he let us know he was able to preserve about 90% of the nerve bundle on each side - yeah!)
I got wheeled up to my room. I had a nice room with plenty of chairs and a cot for Pam to sleep on. The girls were waiting for me and by this time I was feeling relatively good considering what I'd been through. (wife- Joe was a puff ball - cute but a puff ball - He was his typical self -- trying to move from one bed to the other himself. Don't worry the nurses and orderlies kept him under control - it wasn't that hard since he was doped up on morphine.) The rest of the day I was in and out but when I was up I felt pretty alert. (wife - I was really surprised at how well Joe was doing right after the procedure - but that didn't last for long.)
That evening everything started to go down hill. About 1:30 a.m. I awoke with this fairly intense gas pains in my gut. The pains also seemed to move around into my shoulders. I was taking Oxychodone for pain and it had no affect on the gas pains. I new I needed to walk so I got up without any help and began to walk in place since I was tied up to IV's and the catheter. (wife-This is where lack of sleep for 2 days fails you - poor Joe was up hurting and I was sound asleep on the cot beside his bed. I can't believe I slept through all of that.) This pain went on into the rest of the day. I walked the halls with the assistance of Pam but the pain just kept on. I was allowed to eat solid food and I ate some of it which looking back I probably shouldn't have. (wife - I tell you what, Joe is not a sit still kind of guy -- so with the pain, lack of sleep, and small room - I could tell it was a good thing we were able to leave so soon after the procedure.)
After catheter instruction Friday afternoon I was discharged and we headed back to our Aunt and Uncle's home for the rest of the weekend. So much for going back to Tallahassee Friday evening. (about a 4-5 hour trip) I'd never had made it. (wife - Going home Friday I had already figured was pretty much a fantasy - but you know dreams are good for us - right) I kept feeling like I needed to go to the bathroom for a bowel movement but nothing much would happen. I kept walking, ate a light dinner, and sometime over night the pain subsided. Saturday, The next morning back on the pot and finally I passed some gas. It was a glorious thing! I continued to have mild gas pains and the travelling pain in the shoulders. I started running a fever. By this time I got off the Vicodin I was given for pain and was just taking Tylenol. The temperature spiked to almost 102 degrees. The Doctor had said to call if it got to 101. So after a call he said to keep up the fluids make sure the catheter was draining properly and continue to take Tylenol. Call again in the morning if it had not normalized. (wife- okay a little panic set in here - but the doctor calmed my nerves right away - let me know what to do and how to take care of everything.)
Sunday morning my temperature was normal and the old bowels were moving. I got the seepage around the catheter tube that everybody has talked about. Just keep it clean like everybody says, this is important. I found that cleaning the tube and lubing it with Neosporin and a syringe of lidocaine gel that was given to me in the hospital works well. A nurse got it for me and said it would help with bladder spasms. I do it about three times a day. Pull the penis back as far as you can so it gets in there. I made it home Sunday without any problems thanks to my chauffer and the round doughnut I got at the drugstore. I used the doughnut for the next few days it made sitting a lot more comfortable. (wife - Okay I am telling on Joe here - he actually told me he didn't think he would need the "donut cushion" and that maybe I should just pick up a swimming float - for all you guys out there - the heavy weight donut cushion has been a pain saver for Joe. I am glad I didn't listen to him)
I used the bucket for the night bag. It made showering easier and keeps you from having an accident on the floor if the valve accidentally pops open. Also be very, very careful not to step on your tube with the night bag while your getting off the toilet. You don't want to yank that tube out of your bladder. This could happen and it is an emergency back to the hospital for more surgery. So be careful. It's Sunday and its been a week since I got home, so far every day has gotten better. I feel great but my energy level is not back. I get tired if I do too much.(wife - I worry that he is doing too much - but he has actually been a pretty good patient. He doesn't ignore me when I nag him about slowing down a bit or taking a rest. It probably has something to do with the fact that I could take him in a wrestling match right now - not sure though.) I walk about 2-3 mile every other day and I walk a good bit in between (wife - a good bit is an understatement.) Still taking the Tylenol and an antibiotic. Pain has been minimal since a week ago.
On another note, some guys have mentioned getting erections in the morning with the catheter and I wondered if this was really possible. Well I have experienced this several times. It is uncomfortable but I hope this is a good sign. My wife has taken the whole month off to help me with my business. I started going around with her about half a day last Thursday. She drives me around and she does most of the work while she lets me supervise. She's a gem. She won't let me pick anything up heavier than a milk jug. That's what we were told. (wife - Joe is a pretty good supervisor -very kind to the help. Side note - I have a sneaking suspicion he is fishing for one of you guys to tell him that he can go back to lifting weights - hummmm.) My appointment to get the catheter out is for this Thursday. We will head back to Tampa Wednesday so we can be there by 10 a.m. The drive is a pain but it's been worth it.
I will post again after Thursday. (wife - I can't wait for Thursday) Thanks again to all of you who are active on this sight. Especially Terry and all his hard work. I also want to thank Glen Leslie, Mark W, and Scott G for e-mail support and Alice L for supporting Pam. (wife - You guys and gal are all so awesome. If you have ever wondered whether you have done anything "worthy" in your life - please know that you definitely have. I thank God for bringing you all into our lives - we couldn't have come this far without you...to be continued.)
June 18th- We arrived at Moffit and I was taken back to a room with a exam table and an x-ray machine. They asked me to lie down and they connected a bottle of solution to the catheter tube and filled my bladder with a solution that filled my bladder and I watched it on the TV screen. My bladder felt fuller than I can ever remember and I had to hold it while pictures were taken. After a few minutes, they drained the solution, hooked me back up to my bag and sent me down to see Dr Pow-Sang's nurse practitioner. She said that I passed the bladder test and I would get the catheter out. Yeah! Another nurse came in and prepared me to get the catheter out. She drained the balloon holding the catheter in and before she could pull it out I was pushing the thing out on my own. I guess we were out of sink but it came on out in front of a good bit of fluid. It felt weird but didn't hurt. She had brought a bucket to the end of the exam table to catch the fluid and she asked me to try to stop and start the flow on my own. I could and this was good. I brought Depends for the drive home just in case. It turned out I didn't really need them but you never know so don't forget a pair for your ride home.
The Nurse gave me paper work for my blood test and set my apointment for September. When the nurse gave me my paper work for the blood work, she gave me the pathology report on the prostate. The margins where clear and only 1% involvement. I guess I'm lucky it was found so early in the first place.
After I got home I tried sleeping through the night with just an underwear pad. I was succesful. Very little leaking. I had bought the women's pads. They are cheaper and you can get them in smaller quantities.
Since then leaking has been minimal and I was able to stop using the pads after about three weeks. I only leak if I strain. Don't try to pass gas when you need to pee.
As for E.D. there is some, but not bad. I am still taking the Viagra 50mg about every other day. I have been able to get an erection with and without Viagra since I got home. I'm able to get about a 5 on the Glen Leslie scale. I have not had a 6 yet. I'm still hoping to get back to that. It's still early and I feel fortunate to be where I am.
August 2, So far I am very pleased with my progress I feel near 100%. I will report back on PSA reading in September. I really hope all this helps somebody as much as this site has helped me. Thanks again to all.
(This is the wife - Well believe it or not I don't have as much to say this time. It is almost like the last 5 months were a really, really bad dream - that has ended on a happy note. Things are basically back to normal -- yeah! I can't wait to get this next doctor's visit past us...and then we really will be back to normal.)
I didn't think that the anticipation of a good report would bother me but as it got closer I got a bit anxious. We went back to Moffitt in Tampa. My report was good. PSA is 0.1. They said that 0.1 or less was undetectable. They said I didn't have to come back for 6 months.
So far I'm still happy with my decision and my progress is still good. No leaking unless I wait to long and have to go bad. E.D. has not been bad but I don't think I'm 100%. Some days are better than others. It's worse when I'm tired. I think that's normal for everybody. I'm not taking Viagra as much. I don't think I really need it any more. The Doc said I could wean off of it.
Will report back in 6 months.
Later: This is an add on to Joe's entry from "the wife". I was not quick enough to get in on his last post so I am having to send my comments separately. I had been advised that I might have some anxiety about the first follow up visit. I thought no way...not after all we have been through and all the great reports. BUT low and behold I was pretty nervous -- It was just the need to hear that the PSA was undetectable. I was so relieved to get the good news I forgot to ask half my questions. So, all you wives out there be better prepared than me. All is going wonderfully...Joe is actually having to take care of me right now...I just had to have surgery -- with similar recovery process -- but definitely not as scary. Talk to you next time.
Hi all, sorry for the delay.
Since my first check up in October of 2009, I have been back every 6 months. March 2010 and September 2010. Both PSA readings were 0.1 (undetectable). The last visit I had to have the digital exam. What?! I thought I was done with that. No. They said I needed to have the digital annually to check for the remote possibility of tumor growth. Other than that the exams are mainly a PSA report and a discussion of complications, ED, Incontinence.
For me ED has still not been a big problem. I think performance may be slightly off from pre-surgery and has stayed about the same. I have Viagra that I use some times but it's not always necessary. Viagra isn't cheap, about $15.00 a shot and insurance won't cover it. I guess they think it's a recreational drug. Well hell yea! On the other hand, if my sex life sucked I'd have mental health problems. Pay for that insurance company!
Incontinence is not a problem. Just normal getting older stuff. Don't leave the urinal too soon:-) I have caught myself going in my sleep if I've had to much to drink the night before ;-) So watch that!
My next scheduled visit is in April. I still worry about my PSA results right before my check-up. I'm still very happy with my decision. Life is good!
The wife -- Amen! All is great...there is still that little bit of anxiety before each check up, but other than that all is GREAT! Bottom line hang in there fellows, significant others to fellows, and other family members!!!
Sorry for the long delay. My two six month check ups in 2011 were uneventful and that's good. Still undetectable PSA;. The doctor thinks its best to continue the digital exam every year. Even though there is no more prostate, they think it is a good idea.
My three year check up is coming up in May. I will post an update then. Still get worried about the PSA; every time. I guess that will never go away. So far side affects are pretty much normal.
The wife: I am happy to report that my loving husband is doing exceptionally well (with only an occasional glitch in remembering to take out the garbage -- apparently that is a side effect from the surgery?). We both still get a little tense when PSA; time rolls around...but so far so good! Yeah!
It's been a while since my update. My apologies. I don't particularly have any side effects. I continue to be aware that over indulging in adult beverages before bed. I also continue to do Kegel exercises to help in leakage from lifting or straining. My sex life is normal other than grandchildren wanting to sleep with Grandma and Grandpa. lol. So life is good! Remember, you are not alone.
Joseph's e-mail address is: jjking52 AT yahoo.com (replace "AT" with "@")