Need some help, please

I have recently joined CSN after reading many posts over the past 4 weeks. It certainly appears that although nobody really wants to be part of this group that it’s like everybody is your friend and that you try and help each other. I find it very heart warming.

I was diagnosed with PC in September. Gleason score 3+4=7 PSA of 4.9 (that had gone up in a year) Clinical stage T2B and I am 68 years old. I did not care for the Urologist I had and through must research and discussion the Mrs. and I decided to get a second opinion. We ended up at Sloan-Kettering and after waiting almost 2 months was able to get an appointment with the chief of Urology Dr. James Eastham. After weighing all the options we decided to have the surgery which was done on January 11th. I had the RRP nerve sparing surgery. Final pathology report showed cancer contained to the prostate. By the way, great hospital and surgeon.

Sorry it took so long to get to the question, but I know it’s only been about 5 weeks and do see some progress with leaking. Is there anything else besides the Kegel exercises I can do. It seems that at night I am good but during the day if I do the slightest thing I leak. Using about 5 or 6 pads a day which doesn’t seem like that much. I would appreciate any help and thanks in advance.

Bob

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,495 Member
    Hope for your quick recovery
    Hi Bob..nj

    It is too early to think that you will not be a pad free survivor. Many guys report in this forum that the problem took then two or three weeks before getting to normal.
    Here are two post you may follow to give you some insights;
    http://csn.cancer.org/node/208575
    http://csn.cancer.org/node/171976

    I hope some members will answer your appeal. But the title of this thread should be more direct to your wishes; something similar to this “Besides the Kegel exercises what can I do for Incontinence”.

    I hope for your quick recovery and wish you good results from the surgery.
    VGama
  • CharlieG
    CharlieG Member Posts: 67
    Hang in there
    I am about 5 months out from surgery and I can tell you that the 3 month mark was a pretty big milestone. I still can leak a little, however, I am dry at night and pretty much dry if I don't excert myself.

    Keep doing the excercises! They really do help and develop a muscle that needs to be developed. What was once three sphincters is now one. Lots of pressure on that guy...
  • mattmans5
    mattmans5 Member Posts: 70
    Hi Bob ,
    I was operated on By Dr Eastham also , I had an open rp,on Jan 4, I also am good at night , and wear 2 pads a day , I will be seeing him on Feb 28 , I was to be there Feb 26 but recieved a call reschedule , I will be speaking to him about the leakage , I am sure he will tell remind me 2 months possibly still leaking , and at 6 months 70% report no leakage , so lets keep are fingers crossed , I was gleason 3+4 also , and I am greatful I had such a skilled surgeon , I am also confident that many men will give excellent advice , will be looking also for the reports

    good luck and best health ,

    joe another Dr EASTHAM FAN
  • BOBfromNJ
    BOBfromNJ Member Posts: 32
    CharlieG said:

    Hang in there
    I am about 5 months out from surgery and I can tell you that the 3 month mark was a pretty big milestone. I still can leak a little, however, I am dry at night and pretty much dry if I don't excert myself.

    Keep doing the excercises! They really do help and develop a muscle that needs to be developed. What was once three sphincters is now one. Lots of pressure on that guy...

    Thanks CharlieG
    Sounds good. Thanks for the advise, I will keep doing the exercises. At lease around the 3 month mark doesn't sound that far away. I guess everybody is differant.

    Bob
  • BOBfromNJ
    BOBfromNJ Member Posts: 32
    mattmans5 said:

    Hi Bob ,
    I was operated on By Dr Eastham also , I had an open rp,on Jan 4, I also am good at night , and wear 2 pads a day , I will be seeing him on Feb 28 , I was to be there Feb 26 but recieved a call reschedule , I will be speaking to him about the leakage , I am sure he will tell remind me 2 months possibly still leaking , and at 6 months 70% report no leakage , so lets keep are fingers crossed , I was gleason 3+4 also , and I am greatful I had such a skilled surgeon , I am also confident that many men will give excellent advice , will be looking also for the reports

    good luck and best health ,

    joe another Dr EASTHAM FAN

    Hi Joe
    Good to hear that your also a fan of Dr. Eastham. Besides being a great surgeon he is also a good and caring person. Of course my wife fell in love with him. Looks like things got very busy in his office and since I live in central NJ its a bit of a trip. My appointment is not until March 30th so I could get a late morning appointment and avoid "rush hour".

    I guess we are all looking to stop the leaking asap but it does seem that its going to take time. It is a bit fustrating.

    Good luck to you too,
    Take care, Bob
  • mattmans5
    mattmans5 Member Posts: 70
    BOBfromNJ said:

    Hi Joe
    Good to hear that your also a fan of Dr. Eastham. Besides being a great surgeon he is also a good and caring person. Of course my wife fell in love with him. Looks like things got very busy in his office and since I live in central NJ its a bit of a trip. My appointment is not until March 30th so I could get a late morning appointment and avoid "rush hour".

    I guess we are all looking to stop the leaking asap but it does seem that its going to take time. It is a bit fustrating.

    Good luck to you too,
    Take care, Bob

    Hi Bob

    I will say hello for you when I see him , and I wil post after the visit on the 28th ,

    looking foward to the warm weather , to take a run ,, The Great south bay Triatholon is a race for beginners for charity , I particapated with 3 of my older boys last year , on June6 in East Islip ,

    I hope to do many more thanks to catching this beast early , and the side effects , well ... hopeful they will pass , but they are not going to slow me down

    good luck bob
  • BOBfromNJ
    BOBfromNJ Member Posts: 32
    mattmans5 said:

    Hi Bob

    I will say hello for you when I see him , and I wil post after the visit on the 28th ,

    looking foward to the warm weather , to take a run ,, The Great south bay Triatholon is a race for beginners for charity , I particapated with 3 of my older boys last year , on June6 in East Islip ,

    I hope to do many more thanks to catching this beast early , and the side effects , well ... hopeful they will pass , but they are not going to slow me down

    good luck bob

    Hi Joe
    I think we are all looking forward to the warmer weather. I just came back from a short walk and it was 59 degrees out.

    Can't believe that you ran in East Islip. We are originally from LI. Lived in New Hyde Park. Still have many relatives and friends on LI, but hate the trip. I don't run but do like to walk a few miles to try and stay in shape.

    Its up to you but in addition to posting your follow-up here, I can give you my email address and maybe we can "compare notes" or just talk. Hope your having a good day.

    Take care,
    Bob
  • lew_in_marietta
    lew_in_marietta Member Posts: 14
    Congrats on your results,
    Congrats on your results, Bob, and welcome. The exercises and straining against the leaks seemed to make my incontinence improve more rapidly, but who knows? I also had a RRP but my cancer was more advanced than yours and they took more out. It took me 6 months to throw away the pads. A friend whose case was almost exactly like yours took much less time. Good luck.
  • mattmans5
    mattmans5 Member Posts: 70
    BOBfromNJ said:

    Hi Joe
    I think we are all looking forward to the warmer weather. I just came back from a short walk and it was 59 degrees out.

    Can't believe that you ran in East Islip. We are originally from LI. Lived in New Hyde Park. Still have many relatives and friends on LI, but hate the trip. I don't run but do like to walk a few miles to try and stay in shape.

    Its up to you but in addition to posting your follow-up here, I can give you my email address and maybe we can "compare notes" or just talk. Hope your having a good day.

    Take care,
    Bob

    Hi Bob
    My email is [email protected], , I would like that as it is a new road and it was nice to hear someone with the same score same surgeon in the same month ,

    God is good

    joe
  • BOBfromNJ
    BOBfromNJ Member Posts: 32

    Congrats on your results,
    Congrats on your results, Bob, and welcome. The exercises and straining against the leaks seemed to make my incontinence improve more rapidly, but who knows? I also had a RRP but my cancer was more advanced than yours and they took more out. It took me 6 months to throw away the pads. A friend whose case was almost exactly like yours took much less time. Good luck.

    Hi Lew
    Thanks for the good words. I did have one question as to what you mean by "straining against the leaks"? Is this something differant or in addition to the actual Kegel exercises? I try and do them as much as I can. I know it will take time. Thanks

    Bob
  • BOBfromNJ
    BOBfromNJ Member Posts: 32
    mattmans5 said:

    Hi Bob
    My email is [email protected], , I would like that as it is a new road and it was nice to hear someone with the same score same surgeon in the same month ,

    God is good

    joe

    Thanks Joe
    I will be in contact.
  • JR1949
    JR1949 Member Posts: 230
    BOBfromNJ said:

    Hi Lew
    Thanks for the good words. I did have one question as to what you mean by "straining against the leaks"? Is this something differant or in addition to the actual Kegel exercises? I try and do them as much as I can. I know it will take time. Thanks

    Bob

    Still Leaking
    HiBob,
    I had radical prostatectomy March 09 and still have some leaking. I use an average of 3-4 Poise overnight pads during the day and a small thin one at night. This is improvement, but nothing to brag about. I confess that I have not been regular with the Kegel exercises but when I was doing regular it seemed to help some. I need to get back on the Kegel plan.
    I have decided it is different for everybody from what I have read on these threads.

    Good luck to you, perhaps you will be one of the lucky ones and get back to normal soon.

    JR
  • nineofclub
    nineofclub Member Posts: 1
    hello Bob
    I am 53 and had

    hello Bob
    I am 53 and had ralp surgery in november. Each week my leakage gets better. this week it has been 3 months since the surgery and i am pad free. My physical therapist included lower ab excersises with the kegel excersices. I found practicing holding in my lower ab while i cough and do kegel helps. It gets better with time.
    Lenard
  • Mark58
    Mark58 Member Posts: 41
    BOBfromNJ said:

    Hi Lew
    Thanks for the good words. I did have one question as to what you mean by "straining against the leaks"? Is this something differant or in addition to the actual Kegel exercises? I try and do them as much as I can. I know it will take time. Thanks

    Bob

    Kegels
    The exercise that seemed to help me the most was to start urinating; then try to stop the flow. This helped me to exercise the right muscles. I would do that several times per trip to the bathroom. This could be the same thing Lew was referring to when he said "Straining against the leaks". I was completely dry in about 2.5 to 3 months. It's been 7 years now and still dry. Best of luck to you.
    Mark
  • Will_10_2010
    Will_10_2010 Member Posts: 43

    hello Bob
    I am 53 and had

    hello Bob
    I am 53 and had ralp surgery in november. Each week my leakage gets better. this week it has been 3 months since the surgery and i am pad free. My physical therapist included lower ab excersises with the kegel excersices. I found practicing holding in my lower ab while i cough and do kegel helps. It gets better with time.
    Lenard

    Hi Bob
    My date with davinci was Dec. 15. I'm almost pad free now. As others have stated, kegels are the key. Someone on this site mentioned that he was advised to go pad free (as soon as practical, even with some wetness) at home even though he was using pads when going out. I tried this and I'm a strong advocate of this strategy, it helped me. Good luck, and remember to keep everything in perspective.
  • BOBfromNJ
    BOBfromNJ Member Posts: 32

    Hi Bob
    My date with davinci was Dec. 15. I'm almost pad free now. As others have stated, kegels are the key. Someone on this site mentioned that he was advised to go pad free (as soon as practical, even with some wetness) at home even though he was using pads when going out. I tried this and I'm a strong advocate of this strategy, it helped me. Good luck, and remember to keep everything in perspective.

    Thanks Will
    It sounds like a good strategy. I guess some of this is in your head (the big head) I know I am good at night but use a pad just in case. This might be a good place to start by not using a pad.

    Thanks again for your input. Good luck to you also.

    Bob
  • BOBfromNJ
    BOBfromNJ Member Posts: 32

    hello Bob
    I am 53 and had

    hello Bob
    I am 53 and had ralp surgery in november. Each week my leakage gets better. this week it has been 3 months since the surgery and i am pad free. My physical therapist included lower ab excersises with the kegel excersices. I found practicing holding in my lower ab while i cough and do kegel helps. It gets better with time.
    Lenard

    Thanks nineofclub
    Sounds like another way of doing things that I haven't heard of before. I guess if it helps its a good recommendation. Thanks. Good luck to you.

    Bob
  • Klemon
    Klemon Member Posts: 26
    Hi there
    My husband had the

    Hi there
    My husband had the robotic surger (age 64 in July 10. He was very lucky in that his leaking was limited- no pads at all and limited to just a few drops during heavy lifting for about 2-3 months. The excercises helped immensly, but his surgeon Dr Frank at Mayo Rochester, advised lots of walking from the time the catheter came out. He was walking a mile daily at 10 days and 4 miles almost daily by about 4 weeks, the walking also strengthens the pelvic floor along with doing your exercises.
    The exercises also help with sexual function. Speaking of, my husband had the most leaking just prior to orgasm during sex, for about 3 months. Nobody warned us of that ! :>) Good luck to you.