Scared and in need of a little support (2nd Thread)

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Leandra
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 4/2/2007 10:06 PM (GMT -7)   
I thought it was about time I started a new and more positive post, we have only one day left to deal with this catheter then a whole new life ahead of us.
 
After all the worry and and aprehension of surgery I have to say that everything went perfect,his surgeon told us he was a perfect candidate for RRP and according to her everything has been as in the textbook since then, better in most cases, he is doing great but oh so fed up with the cath, he's sore and finding that it's stopping him from moving as normal, occasionally he forgets it's there and tries to get up like he used to, only to find that the darn thing stops him and pulls like mad, I would say that about half of his staples are already coming out and I am amazed that some of them have lasted this long, I truly thought they would be out by now.
 
Pain after the surgery was minimal, they had him on Morphine for a short while,  within 12hrs he was on his feet, within 18 hrs we were taking our first walk outside, he was eating as normal as hospital food would let him( he hates their food )and I was having a problem keeping him IN bed :-) , as normal he couldn't sit still.
 
 
He's staring to get apprehensive about the pathology results, which we will also get on wednesday, I must admit I have been thinking about them too, and just hoping and praying that all is well, He's a worrier, I'm more practical, yes I am aprehensive about the pathology but to me the worst is over and anything else they decide to throw at us, we will deal with as necessary,  
I would like it someone could give me a little more perspective on this aspect, how do you guy;s really feel about the incontinance? Embarrased? ( which I know is how he feels)Resolved? Disgusted? If you can let me know how this really effected you, I would appreciate the insight and it will help me to get him over this part of recovery.
 
We have Depends in for him at the moment but if anyone has something that worked better for them please let me know, I have already noticed that these seem very bulky and I know he will be very concious of them, thinking that people will notice that he is wearing one, I dont think you can tell, but try convincing him of that eyes
 
Any advice anyone has for after removal of the cath would be appreciated, I think we are ready but if you can let me know of anything I may have forgotten...please let me know
 
Huge hug to all of you on here, I think you are all awesome :-) and thank you so much for all the help and support you have given, I dont think any of you have even the slightest idea just  how much you have helped us, but we couldn't have got through this without you yeah

Title: No Subject  Post edited to add title to thread…

Post Edited By Moderator (bluebird) : 9/30/2007 8:40:16 PM (GMT-6)


Tony Crispino
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Date Joined Dec 2006
Total Posts : 8122
   Posted 4/3/2007 12:32 AM (GMT -7)   
God Bless you, Leandra,
Lots of luck with the results of the pathology, but what ever it is you must remain positive. We'll be here for any additional support. Many of us did get great pathology results, while some, like myself, did not. You will have a wealth of information here so let us know as soon as you are able if you need to tap this well of knowledge. With your continued support, he will be fine.

When my catheter was removed, it was a very uncomfortable two seconds, with a few seconds of "catheter shock". But it wasn't too bad to go through and is a distant memory (blocked out I think). I leaked for a day through about 4 pads. Within a couple days that stopped and while I wore a pad for everyday about a week, I had no issue with continance. All in all, the experience was not as bad as I anticipated. Some here did not fare as well, but my biggest advice is excercise. Walking was key for me to give strength to my groin area and I walked alot. It started as walks around the block a couple times a day. With each day I increased my distances. Last week, barely six weeks after surgery, I walked over 15 miles at a national park. My continance improved instantly and has not been an issue. Also, use pads as soon as possible in place of full depends. They are hardly noticable at all.

Tony

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 4/3/2007 4:56 AM (GMT -7)   
Hi Leandra,

There are a number of posts that deal with incontinence - even one that discusses what pad types are better ot not! I think by doing a search you can find them.
Right after the cath was removed (much the same as Tony described) Don used Serenity for Men - a slimmer line than depends. The quickly went to pads (women's) and exercising. His surgery was Feb. 9, 2006 and by April 8 he walked our youngest down the aisle...dry!

All things will fall into place - you're strong and will be a great help to you husband..maybe if he could get on here he'd see how the guys have handled all kinds of issues.
They are open & kind and willing to share with all of us. Stating the obvious, it helps to know that your not alone - especially with a disease such as this.

We'll be looking for your post re. his pathology and praying for the best.

Take care of yourself,

Susan

M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 4/3/2007 7:25 AM (GMT -7)   
Leandra, I'm so happy that all is going well, even with those few bumps in the road. you know how much you both worried pre-surgery and how it turned out well? the same goes for post-surgery. Jeff was worried about how it would feel to have the catheter removed and that he would be gushing. he said it felt a little strange but no pain, and he had no gushing. yes, the Depends were a little strange but were fine. we both laughed at his tighty-whiteys. tongue he never wet the bed enough to notice. you'll be fine!! take care, kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 4/3/2007 7:58 AM (GMT -7)   
Hi, Leandra. You're ready to move forward and things are looking up! All the best for a great path report tomorrow, too.

My husb. is still one of the laggers on incontinence. It's slowly getting better. Right now, focus on the possibility that continence will come quickly. Husb. went the pad-only route and refused to wear the full underwear things. I think the word "diaper" was just too much. Never had any bed leaks at all as lying down is really when most guys stay dry, anyway. If incontinence hangs on for awhile you'll see all of the emotions you described. They'll come and go and range from frustration and disgust to remembering that this beats the alternative. Then the cycle starts all over again. Up and down, then up again. Stay positive as you can and empathize as best you can when those emotions hit. Just remember - it will get better and most do it fairly quickly!
Husband age 65
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now
 


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 4/3/2007 9:07 AM (GMT -7)   
When Bob had the most urine incontinence, he wore the mens pads along with the depends pants, just in case. Actually they are not that bulky and he felt more secure.

Afterwards as pad useage dropped, he did away with the pants part and just used a pad. Today with just a few drops here and there he still wears the pad just to be sure.

He did not seem to mind either and has always been the sort of guy I figured would find it humiliating, but he coped just fine.

Good luck!
;o) Linda & Bob
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more aggressive, previously undetected cancer)      PSA UNDETECTABLE November 2006 AND February 2007.   
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 4/3/2007 9:25 AM (GMT -7)   

Leandra,

Stay positive!  That's what I've been told on this forum time and time again, and it really is important.

At the same time, help prepare him for a less-than-positive experience when the cath comes out.  I was not prepared for the gushing but that's what happened... and it still happens seven weeks post surgery.  I felt my life was over... that I could never live with all of that pee-wee gushing out, etc.  The incontinence was the worst it could be and no one spelled out the possibilities.  I was prepared for "leaks", not for gushes. 

The positives I had going for me was that (1) I found this web site and (2) I am gradually getting better.  I'm getting better not in giant leaps, like some here, but baby-step by baby-step.  (3) The Lord is helping me. 

I had to visit my dermatologist the day after the cath came out.  I was so humiliated because the nurse had to find something for me to pee in when I released the penis clamp (I didcarded that thing quickly) and the dermatologist had to hold the urninal type thing as I stood there trembling and ready to burst out crying (I did cry some, but not where anyone else could hear me, except my wife... bless her).  The dermatologist offered much more sympathy to me and offered much more help than my surgeon, who was in-and-out too quickly.  One thing he said that still stays with me was "This will pass."  I saw him again recently and he said, "Boy, you're doing much better than you were before."  Amen.

So stay focused and positive.  This will pass.  And prayerfully the path report will be good.  If it's not, there is still lots to be done for him, as you know.  yeah

I too decided agains the Depens underwear and go for the Depends pads, even though I have to change them several times a day.  If I had to change the underwear I'd have to take my pants off every time.  And the pads don't show.

Gene 

Gene


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/3/2007 10:20 AM (GMT -7)   

  :-)   Helping to keep the Journey together.....

 

Leandra's 1st Thread is below...... yeah

 

Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Scared and in need of a little support

 

 


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 4/3/2007 10:38 AM (GMT -7)   
Just an added comment about depends underwear and the pads. If a person wore only the underwear, in addition to Gene's comments, would be the sensation of the entire thing getting wet and the feeling that would go with that versus one pad that can easily be changed and keep the wet all in one place.
;o) Linda & Bob

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/3/2007 7:44 PM (GMT -7)   
    Leandra,  If you read my "KW's Journey" you'll see I one of the worst on here when it comes to the incontenance.  I still fighting it at almost 6 months post op.
    As far as cathiter removal it was no big deal.  Just a couple of seconds of a strange sensation then it was over.
    I wore the Belted Depends for a while.  Yes, they were almost like diapers but that is all that would work to contain the leaking.  After a while I switched to the Depends Underguards for Men.  Those are the pad's that slide in the front of your briefs.  I'm still using 6-10 of those a day depending on my activity level.  I do work a job where I'm on my feet all day so I start to leak a little more in the afternoon than in the morning.
    I also just had a collagen injection to try to beef up the sphincter structures.  It has helped a great deal but it has not been a cure all.
    I try to remain positive because all my labs and last two PSA's have come back clean.
 
    If you battle the incontenance just remember your not alone.
 
    KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.
    Return office visit May 2nd unless leaking starts agian.
    May 22nd Follow up and 3rd Post Op PSA
   


Leandra
New Member


Date Joined Jan 2007
Total Posts : 14
   Posted 4/4/2007 11:40 PM (GMT -7)   
hi everyone. the catheter and staples were removed today, thank goodness he dosen't have that leash attached anymore, he seem to be able to relax much easier now.
 
However that pathology report wasn't as good as we had been hoping for, lymphnodes and seminal vescles were clear,from the biopsy it was thought that it was confined to one side it was actually in both sides.
Gleason Grade 4+3 =7 involving 60% of prostate volume
Perineural invasion present
positive margins on right apex
 
 
They haven't given us an upgraded stage as yet and to be honest we didnt think to ask. they told us that during the op they took a liitle bit more of the urethra just to be sure, that's where the positive margins are, they seem to think that they did get all of it but can't be sure, the pathology found cancerous cells in the extra they took, so now we have to have a psa in 1 month then another in either 1 or 3 months depending on the results, he was upset this afternoon so didnt call and see what his psa was from today, i dont think he wants to know right now.
 

Post Edited (Leandra) : 4/10/2007 5:44:01 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 4/5/2007 1:58 AM (GMT -7)   
Hi Leandra,
Reading your post this morning is a hit on my experience. I believe from your description your husbands stage is T3a. Your stats are almost the same as mine but I did have seminal vesical involvement thus I am T3b. It is 1:45am here in Vegas. I have had trouble sleeping tonight but I think it's from caffiene. I am very sad to read this as it further deepens my hatred of cancer. You will see some more discussion here from others who also had the pathology report you experienced today. To that I first say God Bless you and keep the faith. I am here to help in any way I can. Sharing the same stages of this disease is an unwilling fraternity but we can survive it. I believe that we can do just fine. And you must stay positive.

note: On the lump, I believe that it is possible that while healing from the surgery hernia can be a temporary nuisance. It is very uncomfortable, but in many cases goes away. I did not experience them but I have read that these occurances are not unusual.

Our prayers include this sites members, but for you today, I will say another.

Tony

4+3=7
Stage T3b
Pre-op PSA was 19

PSA history
12 days after surgery : 0.9
24 days after surgery : 0.1
5 weeks after surgery : undetectable

I now have chosen radiation and HT. At 44 the HT is a real drag. But I know it is prudent.

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/5/2007 11:15 AM (GMT -7)   
Hey Leandra,

I experienced all kinds of odd sensations in the bladder area just after the catheter came out. It was impossible to distinguish "bladder full" from the pain of the surgery. It all got better over the next couple of weeks and the signals became clearer. At first, I just headed for the bathroom anytime I felt anything. Sometimes it was pee time, sometimes it wasn't.

Also, as the swelling went down, my bladder capacity increased. At first it seemed I peed more than before surgery but it quickly got better. I had problems going many times during the day and night before surgery and now I am back to where I was when I was in my 50s. Lots of capacity, strong stream and no night calls.

Good luck and you guys are in my prayers for complete recovery...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 4/6/2007 9:48 AM (GMT -7)   
Hi Leandra,
Here's to hoping for a nive Easter weekend for you. I hope the initial post-op drag is over and you are looking forward now. God Bless and take it easy.

Tony

myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 4/6/2007 5:58 PM (GMT -7)   
Leandra - that's great news - his PSA has gone down so much and after only 2 weeks post! It sounds like things are getting a bit easier - that's a relief for you both.
You're taking great care of him - just remember to get your rest, too.

Have a blessed Easter,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
2/09/06: LRP Restage: T3A NX MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 CT shows lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07 - PSA 0.3


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/6/2007 6:03 PM (GMT -7)   
Hey Leandra,

Good news on the continence for so early in the healing process. It will get better overall as time passes but expect two steps forward and one step back for a while. Don't get discouraged about it or the pathology either. "but don't seem at all concerned" means to not worry about it. Worry doesn't help anything and you want to look at the situation but don't stare at it.

MaryLu (my wife) has followed your journey and asks about you. Good look and be assured that you are in our prayers...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 4/11/2007 7:57 PM (GMT -7)   
Hi Leandra,

Just thinking about you, we hope you kids are OK. Hope you come back and talk.

Here's to missing you....

Tony & Ruth
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