Help With Recovery and Healing process.

Hi all, Maybe Im being a big baby but I am really having a hard time with the many different things going on during recovery. We live far enough out in the country to be able to get any real good advice and too ill at times to run back and forth to the doctor or hospital. 1st let me give you my History.

The beginning of my journey began last October 2006 when my VA doctor didnt like the level of my PSA 5.2. He did a DRE and did not find any enlargement or evidence of a tumor. But he still wasnt too comfortable so he recomended me to have a biopsy to be on the safe side. A week later I reported to the clinic for the biopsy.

 Biopsy Report :

Elevated PSA 5.85

Preoperative Diagnosis

R/O Prostate Cancer

12 core Specimens taken

Prostatic Adenocarcinoma Right core biopsy

Gleason score 4+3 (7/10) involving 6of6 cores

40% of tissue vollume

Left core biopsy

Focal Atypical Acinar cell proliferation.

staging T1c

All greek to me but it meant I was postive for Prostate Cancer. Doctor broke the news to me and my wife. I dont think I heard much past " You have tested postitive for prostate Cancer."

Im a 58 Y/0 Male with a few medical problems ( 2 stints in heart) and over weight. But other than that was pretty healthy. We were recomended to a urologist. we met with him and he discussed the treatment options available. Radical, Hormone, DaVinci, radiation, Beam radiation etc. Recomended us to read DR. Walsh's book on surviving prostate cancer. I go the book and did learn a lot about the disease and the treatments. ( didnt read all of it as some of it scared the crap out of me) but did decide that radical at my age was the best route to go. Get it all and get it now was our motto. Also wanted the surgeon inside where he could get a real good look at things. Surgery was sceduled for Jan 16, 2007. We had a freak ice storm so surgery was rescheduled tor Jan 20th. I read more on the sugery and panicked. Cancelled the 20 th surgery.

After a week I calmed down and realized it was still the best way to go. Rescheduled March 20th. Didnt chicken out this time. Got as positive mineded as I could get and just closed my eyes and let the have at me. ( will do a surgery post later ), When I came out of surgery was shocked as I didnt really hurt and was able to sit up on bed about 5 hours after surgery. Doctor was amazed as I was walking up and down hall with wife all evening. Next day I still felt pretty good and doctor took out the drain tube in my belly. By evening all body functioins were working and he asked me If i felt good enough to go home. I SAID YES ( big mistake, More on this in a few). He discharged me on day after surgery. So i dragged my cath bag and departed the hospital. I should have know it was a false sense of security that I was feeling so good.  I need a break so will continue this post later... sorry not feeling well right now... be back soon

Hi Telstar:  Get some rest and continue posting your story when you feel up to it.  You'll get plenty of feedback here. You are not even a month out of surgery, so don't be discouraged if things aren't going as well as your doctor may have suggested, or as you had expected.  It takes time  --  a nd nothing stops the clock --  so time will pass and you will feel better. Look forward to hearing from you and hopefully offering some advice. Tom 

Thank you KW, PianoMan,and BlueBird. I appreciate your responses and amd grateful for your support.

Ok, Sorry Ive been a little slow at posting but have been in one the the bad spells ( feeling sick) Im still a little shakey but will try to cary this a little further.  Good days bad days yesterday and today were not so good days.

Cont from first post:  After I got home feeling like a champ for getting out of the hospital about 2 am wound up in the ER due to my heart accelerating to 200 bpm and blood pressure up to 190 0ver 110. They found out that I was having a reaction to vicadan pain killers. Any way they got it settled down and I got back home about 6 am. Exhausted sick and feeling bad was really mad at taking the early out from the hospital. I suffered all that day with severe pains in penis and testicles from catheter as well as severe swelling of the testicles etc. Was really panicked at my penis. I was not very big in the first place but this was totaly rediculous < sp. I am circumsized and my penis was gone up inside my skin pulled clear back to almost pubic. And it hurt. Looked like a tennis ball with a turtle neck sweater on. :) I cleaned  the area well and lubed the cath tube with some neo sporin cream and was able to pull it back out to where I could see it again. Had to do the several times for first week to see him. It was bad as i could not pee well with him up inside. just trickle and drip. So had several I guess i could call the anxiety attacks as manay strange feelings and things happening to me in first week If it had not been for my wife I think I might have got stupid and done myself in. I mean I was totaly blind to the things that little walnut size organ can cause when removed. Pain on 1 to 10 scale at least 6 to 8. It totaly imobilized me at times. Could hardly eat with out hours of wanting to heave. No position was comfortable recliner , bed on couch laying down side back in chair. AND no pain pills due to reactioin only tylonol. I have a good pain threshold but this took me over the top. I didnt hurt this much when i got shot in the army. Had several bad time with catheter pain but dut to diligent maintanace cleaning and lubing with neosporin and drinking a gallon plus of water after about 4 days got to a acceptable level of pain.  Im probably going overboard with all this descriptive details but it applies to what I will be askiing later so bear with me.

Well after all that I made it to the catheter removal days. I think if I had know how to deflate the little balloon I woud have saved the trip about 5 days ago. :) Thank the Lord I was afraid to pull out a catheter with inflated balloon. :) .

Ok here begins my concerns list that I would like comments on.

1. When catheter was removed I was dry with no leakage except for a little fluid injected by doctor. ( I was thrillled ) He checked me over and seemed satisified that all was well so I didnt panic. ( my first lesson on taking advantage of the situation. ) I was happy catheter was out so I didnt bother to ask about the problems I had with it and the illnesse etc. WAS so glad to be free and felt all would be well from here on as pains were sort of bearable. SITUATON : Got home ok wearing my first pad and whity tighties. Was almost dry except for a little dampness where penis was. 4 hours later still no urine. Finally felt a little need to go to bathroom 5 mns of dribble dribble and notice my anus hurt severly. ( oh fogot had to sit to even get the dribble wouldnt do nothing standing up ) also only way I even got the dribble was I needed to pass gas and had to strain due to sore anus ( felt like anus was glued shut to had to really strain as gas passed dribble started up. After that only time I would pee was when I was taking bowel movement. Made mental note to call doc next day. I put on my depends pull ups at bed time and pain was low so fell asleep and actually slept fairley well ..... almost about 3 am ( went to bed at around midnight) woke up diaper full bed soaked wife soaked etc. We got up and while she changes sheets ( had a nice bed protector so no damage to bed. ) I took a shower and put on new diaper. back to bed again. Almost every hour from 4 till 6 when I gave up trying to sleep it hosed us down. I love my patient wife at this point. Was really dissapointed. I FINALLY felt the full brunt force of incontenence. But during the day still had to sit and strain like having a bowel movemen to dribble. ( guess it didnt dribble but hosed when I was asleep ). Im at 3 weeks now 1 week post catheter and even though I can stand and pee I still have to push like passing gas or bowel movement to get a weak stream going. I have on rare occassion had a good stream and was able to keagle and stop flow 3 times but only rarely.

Question > AM I just being anxious and this can be considered normal? Or should I have better flow at this point ? Could the having to push hard and anal pain be due to the fact that I have hemmoroids that flare on occasion. I have had times I can pass gas and not pee and no pain but not many. Also I have pains for no reason betweek penis and right at point where penis runs into scrotom and get lots of sharp pains there. Mostly when having to push to pee. Pain is in both the scrotum and Penis.

Whew on out in the open now :)

Ok Is it normal to still have pain in the perineural area when standing up and some times when turning over while lying down.

Have at times lost some mobility of left leg. Can walk and stand fine but if I am laying down can not lift leg stiff straight up at all lots of pain in groin. can not move leg to right laying down can move left but not right.  ( possible nerve problem ? didnt have before surgery )

Stomach is constantly upset ( light feeling of wanting to trow up but not doing it)

Light headiness, Hot Flashes, Sensitivity to heat and cold, Flushing of skin ( creepy crawlies ), and occasional cramps in legs and stomach ( < I feel these are normal but wanted to express it anyway )Ill let everyone ponder on this for now as it is most of it.

Maybe Im just turning into a hypochondriac or big baby but It is causing me concern. I do forget Im only 3 weeks out from what is rated as one of the hardest surgerical recoveries other tban transplants. God bless....    I need a break again .  a fellow in pain  telstar

Also forgive my typo's ( my second language )  spelling and grammer but Im just too tired to edit and fix it all :)

OH YES forgot post op path report

will condense to important findings

took 8 lymph nodes left pelvis , 5 lympy nodes right pelvis all negative

Urethra distal margin margin biopsy cancer adenocrarcinoma present

Prostate gland . Prostatic Adenocarcinoma Gleason grade 4+3 (7/10) Involving 60% of Prostrate  volume Extent involves both right and left lobes apex and base

Seminal  vesicles not involved Perineural invasion present No lymphovascular invasion identified Positive margins of resection right apex block D1 No extra capsular extension seen

TNM pT2c no MX

Bladder neck, Margin excision No evidence of malignancy

my current PSA  2 weeks post .021  ( is that ok ? )

wont have next appointment for PSA and follow up till May 2 for next PSA

So what you all think I know its not good but not all bad either.... God Bless

Telstar,

Your description of your discomfort sounds like normal discomfort from the trauma of surgery and the reaction to general anesthesia.  Some people have more problems with these than others.

My thoughts are the same as others':
Rest.  Walk.  Drink a lot of water.  Tell your physician everything.  Stay positive.

I'm in week 8 and - while still challenged daily by something - every day I see some improvement.

Holding you in good thoughts.
Cedar Chopper

First of all let me say thanks to you all that have responded to my plea for help. After reading the responses I have seen so far I have opened my eyes and come to some real personal conclusions and I'll share these with you. I did like most of you asked and called my doctor and told him of my situation with the recovery problems. His response was like you all .... its only been 3 weeks and the severity of this sort of surgery is a major trauma on more than just the confined area of the prostrate. He is a little concerned about the pee problems and said if it hasnt changed by my May 2nd apt we will do some tests and see what is happening but not to concern myself right now as it is still early. OK now on to what I've discovered on a few hours of contemlating my navel and careful examination of my situation I have discovered the following.

1. Yes I have forgotten what a serious operation this is and need to quit dwelling on all the negative things that have happened.

2. Quit putting the cart before the horse and realize some things have to heal before others can.

3. Get out of this doomsday mental state I have allowed myself to fall into and realize I HAVE had several postive things happen since surgery. A. Got rid of the nasty catheter. B. Most pains have not been as bad as I have allowed myself to experience. I think I mean I make  a mountain out of the old mole hill on the pain. C. No matter what things will improve and quit dwelling on each thing as a permanant situation. D. Stop thinking every pain twinge itch cramp wet pad etc. is a serious incident. E. STOP feeling sorry for myself and realize the REALITY that I have survived one of the most dangerous and hard recovery operatioins that exists and am ALIVE. F. Keep praying and believe that I am going to someday be OK again and quit trying to make it happen tomorrow. G. Communicate with doctors friends family and you all and quit keeping it all inside.

I happened to have a wonderful day today. Almost no pain, was able to walk twice as far as I could last week. Even had a small erectioin ( hmmm ) so maybe there is hope there. Wife was giggeling at me but I dont care I thought it was great.  Even had  a couple of times I felt the URGE and made it to the toilet and actually had a good flow and was able to shut it off and on. I have had a few in the past but the difference here was I pre-detected it. So now have hope of end or better incontenance. I have decided that I let this depress me and I am going to fight back now. I know I will still have dissapointment and victories but to punch through each one and keep on forward movement. Over all I have to admit most of my problems has been lack of communications with others and allow my own imagination to control my hopes and moods. So maybe now I am on the road to recovery.

God bless you all and just the few things said to me by you all has made a major change in my attitude and mental state. Thank you all for your support concern and compassioin.

HUGS were appropraite and HANSHAKES elsewhere

Don't know about the wetness rash control. But get Kegel on your brain. You can Kegel anywhere anytime at the computer at church in bed on the road anywhere anytine and you can't do to many. You just have to think about it. You my friend are going to be ok It will just take some time. Keep that positive attitude look for the good in every situation.

Hi Gene:  You sound like you're heading in the right direction!  It's amazing how even one good day can change an attitude. I heard you should avoid urinating while sitting down, if possible, except of course when you're having a BM.  Also heard that Kegels should be done when the bladder is empty. I still have a hard time isolating the exact muscles that are involved in Kegel exercises but discovered something recently.  I take both hands and (from outside my pants) touch the area where my penis is when I do the contractions.  It's like the body and mind come together, because I've never done contractions like that without having my hand or hands on my penis during urinatinon.  So, even thought I am not urinating during Kegels, I think it has helped me isolate the correct muscles. Hang in there tough guy -- it's gonna be OK.

Telstar -- Patience, Patience, Patience.  Give yourself at least eight weeks to heal -- to hell with that six-week rule of thumb!  And let that freakin' lawn die if necessary!  You'll be glad you did and you'll be double-glad when you bring it back to life, feeling like your old self. I'm about 12 weeks out and back to my normal posture, lifting things, bending, throwing the ball with my son etc.  I could not do those things at four weeks out of surgery, without creating problems for myself.  Like you, right after surgery I took some risks I shouldn't have and paid for them.  You are still healing inside and it takes time. But time flies.  So take it easy -- it's worth it.

Hi ~ Telstar,           Thank you for our HUGS…..   You have had some wonderful responses to your Thread!!!   And ~ it truly is wonderful to see you process your situation…   this thread will truly help others in the future… and is definitely helping you at this time…  Thank you for reaching out!!!!!   It is so important!   Everyone has their “own” experiences and that’s what makes this forum so powerful…   You must read and work through what works best for you…   The link below is from the Helpful Hints page that is attached to your special welcome page…   Click on it and read some extra info on Kegels….     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Kegel Help? Started by:   KW   It’s wonderful to see your mental strength coming around…   I’m going to send you a special rainbow to help when the clouds cover your “Sunshine”.     This is “YOUR” rainbow sprinkled with sunshine!!! ////////////////////// ////// * ////////////////////// /////////////// ////////// * /////////////////////////// /////////////////////////// ///// //////////////////////// ///////////////////// /////// * ////// ///////// ///////////////////// /////// * ////// ////////////////////   Rainbows brings smiles, smiles bring positive energy into our being!!!     In Friendship ~ Lee & Buddy

Hi ~ Telstar….   I forgot to put this in my posting above… We were going to watch a movie but it was 2.5 hours long so decided to watch a show on TV instead!   It’s late 12:48 p.m. EST… but wanted to drop you a quick note.     I’m thrilled you have your book!!!   Now go through it and learn lots from it.   Don’t be scared of it.   It has so much information that it can only help.   You don’t need to read the last chapter… but it is a chapter that is there to help and I did find it well worth reading so I could understand what others are going through. (I read it several months after our surgery)   Now about that lawn mower…… Oh Telstar…. Not a wise decision for sure… I know ~ I don’t have to tell you this.   You found out first hand.   That little sphincter muscle is the main thing that’s going to help you with getting continent…   and you need to protect him at all cost!!!   Have you seen Biker90’s regiment for doing his Kegels?  ? ? ?    Take care for now…. Our thoughts and prayers are with you. In Friendship ~ Lee & Buddy

Hi ~ Telstar & mama Telstar, This posting may have repeat information from my previous postings… this is due to wanting to get a note to you after being away for a few days.   I was waiting to hear your follow-up and so now having taken the time to re-read all your postings…. here’s a few more of mama bluebird’s … chirp~chirp~chirping After going back and re-reading each of your postings…. We are so pleased you posted ~ plus we like the title to your Thread!!!   There are men out there that are reading your thread saying… “This is what’s happening to me!”   So ~ realize right now that because you’ve opened up and have shared deeply… ~ you are now helping others!   It’s a wonderful feeling and it’s evident in your posting that changing “attitudes” truly help to allow you to move forward in a positive motion.   Here’s a prime example from a previous post of yours…partial quote from above!!!   I happened to have a wonderful day today.   Continue on this path of positive thinking.   It is so important that you realize (which you have now)…. You are on a healing / recover stone and you must take the time to heal…   If you lift heavy items or pull yourself up out of a lounger… you are going to hurt yourself and this is something that can be avoidable.   The riding lawnmower…. This still makes us want to cry!!!    We’ve protected this area and will continue to protect the little sphincter muscle for the rest of our lives.   (no more riding bikes, horses…for us!!   a personal decision)    Give your wife a “special HUG”….   It made us smile when you wrote about her giggling….   Laughter is great medicine and it truly promotes healing.    In your postings you stated that communication was lacking.   This is where you have to know what’s going on and you have to push forward to find out answers.   Fear and not knowing can drag you backwards to the point of pure hell… so don’t get to far back ~ okay!!!   Print out your postings…. highlight the areas of your concerns and take it with you to your next appointment if you think you’re going to forget an important issue.   Do it!!!   If your mind is at ease…. You will have a more positive attitude and again promote better healing mentally and physically.   So ~ Just Do It!!!    You will have ups and downs…. And that’s where we come in!   Continue to reach out ~ okay!! It sounds like you’ve got the wetness issue and rash taken care of… good advise from those who experienced the same.   Buddy went without underwear the whole time with the catheter.   And we never applied any ointment to the penis/tubing area.   Instructions from urologist that the body produces natural mucus.   We did keep the area clean with soapy water but never dried the tubing.. and we had ‘no’ issues with the catheter at any time.     Again ~ different ideas work for everyone.   That’s why this form is so important in the sharing.   We are allowed to pick and choose what works best for “us”…   Your question in the last posting ….. You don’t think I’ve waited to long do you ?   No ~ it may take a little longer to see “continence” due to not working the muscle before hand… as long as you start “now”…. (see Biker’s posting above)   We are not going to counteract what your doctor or what other members share with you.   But we will share our personal thoughts….. we feel that the kegels should be done before surgery to get this little guy ready to do a job that he’s never had to do before, then after the catheter is removed ~ this becomes a lifetime exercise to help continue “continence”.    Buddy continues to do the stop,start,stop,start… during urination.   The walking (7 days / week) and the Stairmaster at the Y! (2 days / week) is the exercise that he feels helps with the strengthening of this muscle on a continued basis.   I just turned to him and he no longer does kegels other than when urinating.   Remember… it is a work in progress.. and we are 1 year past surgery.   So ~ it is different until you get a good control.   SO ~ you must listen to “your” body and decide what works for your situation.   That’s why this forum is so powerful!!!!   Options become available and you pull what you need from “all of our” experiences.     I do have concerns that you are having to strain to urinate…. Watch this carefully because you do not want to have scar tissue build up to the point that you are completely blocked.   Monitor this closely so you recognize this and can act quickly.   It is not uncommon to have scar tissue build up and close off the uretha. See page 243 in your book … Bladder neck contracture.   Again… just be cautious and know the signs….   Chapter 8 is a must read and a must re-read in our opinion.   Learning more each time we read it.   And having experienced things that are right there on the page…. truly takes the fear away…   So ~ keep moving forward with your positive attitude and don’t hesitate to make an appointment if you still have concerns.   Question?? Are you taking stool softener??? The less stress/straining you have on the area is better all the way around.     Placing our personal experiences on this forum is so important…. Allowing so many to realize they are not alone.   We are all traveling the same path toward becoming prostate cancer free and having a few helping hands to hold along the way is so rewarding for all of us.   Some of our paths have extra stones placed in front of us and that’s where we hold those extra close to us…   This Journey is best traveled with Friends……     Continuing to keep you close as you continue forward on the recovery/healing stepping-stone on Your Journey. Thoughts and prayers are with you ~ In Friendship ~ Lee & Buddy

Hi all. Well things do seem to improve some and fall back a times. I am really beginning my contanance battle now and trying to work on it and not let moments of nausea and things get to me. It is mild and I can usually push through it. If it ( nausea ) continues Ill bring it up with doc. Oh heck I bring it up any way tomorrow with the tele nurse just for bugging some one sake. Dont want them to think they got rid of me that easy..

On continence subject. Ive noticed I dont need to pee much in day time even though I do drink lots of fluids. When I do I have a fair and sometimes good stream. At time I feel a warning sensation sort of like a little itch and if I head for the rest room FAST I can some times have a fairly normal stream.  Is it possible that the bladder is holding back naturaly as I dont have any feeling of fullness just till it sends the warning tingle. Am I maybe getting lucky ? I dont have much control at night though. Have to get up 2 to 3 times to change diaper. During day using a couple of pads unless I dont heed the warning feeling. Then some days I flow like a river so I gess  a lot is keep working at it and see what happens.

thanks all and God bless