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Losing Patience

tgc0uf7
Posts: 2
Joined: Apr 2017

I had my robotic assisted prostatectomy on February 14.  All went well. Tumor was confined to prostate, nothing in surrounding tissue, and benign lymph nodes.  The catheter was removed on February 27.  I started out using about 5 or 6 pads a day and at least 3 thru the night. I never felt the urge to urinate.  I called the urologist and was told this was normal and to expect 12 to 18 months to gain full control.  It has now been 2 months.  I still use 1 pad thru the night and 2 or 3 during the day.  I still do not get the urge to urinate.  When I do go it is usually a weak stream or dribble.  The best day was 2 weeks ago when I went all day with one pad.  My thought is that my bladder is never getting full to give me the urge to go or enough pressure for full stream.  I move around quite a bid, standing to sitting to bending.  That is when the leaks happen.  I am getting frustrated with this whole thing and am questioning my decision to have the surgery.  My wife says I am not giving it enough time.  Am I where I should be after 2 months?  I am 64 and do not look forward to a future of depends.

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

TGC,

Welcome to the board. I would suggest you to give more time for improvements. From your comments it seems that the sphincter is working but it is still disconnected from your commands.

Incontinence is typical in PCa surgery interventions, and one nevers returns 100% to his previous condition. We may regain an acceptable control very close to normal, unfortunately some never regain functions and need to use apparatus (pads, slings, AUS, etc) for the rest of their lives.
The incidence depends on how much damage was done at surgery. Too much cutting at the sphincter area causes permanent issues. The nerves surrounding the prostate are also dissected so that one may lose that feeling for urge or even the ability for squeezing the localized tiny muscles to avoid linking or cause pressure when urinating (leading to the dribbling stream). Erection dysfunction makes part of the same issue. One needs to regain control and need time for the body start using a different nerve network/path to get those orders for reaching the region.

Can you tell us your age? Older survivors take longer to get things back to acceptable status. You need to accept your newer you.

Best wishes,

VG

Clevelandguy
Posts: 409
Joined: Jun 2015

Hi,

Got to go with the wife on this one, give it more time.  It takes months and​ months to heal.  I went from an adult diaper to a lite pad in about two years.  I only leak a very small amount when I make an odd move or really strain.  You should see small but steady progress over the next several months.

Dave 3+4

tgc0uf7
Posts: 2
Joined: Apr 2017

Thanks for the input.  I guess I have to wait to get back to "normal".

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

tgc,

I had DaVinci about 2.3 years ago. While I got control faster, your case seems somewhere in the normal range.  I would not dispair. Were you taught Kegel Pelvic Floor exercises ? These usually help a lot.  If not, ask your doc for training; this is usually done by an RN.

Part of your post I could not get to fit, in terms of "volumn":  If you are using relatively few pads as you described, then you have got to have some urinary retention (control), even if you are not yet sensing it.

The ability to feel in the surgical area takes a while to heal, especially the nerves. And as was mentioned above, what the surgeon had to do around the base of the bladder (spincter area) makes a difference. Ask him to specify if there were any problems that could be affecting recovery time.

I had pretty bad BPH before my surgery, and have better control now that BEFORE the operation, although I still wear a liner if drinking beer. Otherwise, drier than before DaVinci.  I would say be thankful that the cancer is gone and that there is a liklihood of significant improvement. Some guys will tell you that their radiation experience was heavenly, but others say otherwise.  it is counterproductive to second-guess your very reasonable treatment choice at this point.

max

Will Doran
Posts: 207
Joined: Sep 2015

TGC,

You have to have patience. 

I'm a 3 1/2+ years survivor.  Diagnosed in Aug 2013, had no Symptoms of PC.  When diagnosed I had a PSA of 69 and  gleason of 7. Robotic Surgery December 2013 followed by two years of Lupron (HT) and 8 weeks of Radiation.  As a result of the surgery, I developed a Hernia in my right groin area, and a benign tumor.  That was all from injury from the surgery.  My control was getting worse and worse and I went from a thick pad at first to a thin pad, then back to thick pads.  We were making plans to repair the hernia and remove that tumor, but after 5 1/2 hours of robotic surgery they said it was too soon, unless I had problems.  My Hernia acted up two months ago, and I had to have surgery to repair that Hernia. It hadn't been giving me any trouble until that point.  So, went to the ER the doctor on duty called a surgeon.  The surgeon came in at 4:30 AM and was ready to do the surgery.  We got the hernia back in place, so we waited three days until we could get the surgey done and the doctor could have his own staff assisting.   I mentioned the tumor and he saw it in my CT scans.  The surgeon said he would remove it if it was in the area he was working.  Turned out the tumor was in his way, so he removed the tangerine sized tumor when he repaired the hernia.  Result.  Complete control is back.  Still wear a thin pad, just in case.  Hernia and tumor had been putting pressure some where, and causing control problems.  My Urologist / Robotic Surgeon gave his "blessings" before we did the hernia / tumor surgery.  However he doesn't know the tumor is also removed.  I'll see him in two weeks for my 4 month check up.  Great thing is I just made a trip to a family funeral and went 2 1/2 hours drive with no problems.  Same on the return trip home.  I was never able to do that even as a young man, going back and forth to college.  I'd always have to stop half way. So, there is hope and it will get better.

As suggested above, do Kegel Exercises.  I was so bad at first that I went to Physical Therapy for bladder control.  That helped to a point and then the pressure from the hernia and tumor undid all that. 

So, PATIENCE my dear man.  And-----> do your Kegels. 

Love, Peace and God Bless

Will

BigTdog
Posts: 1
Joined: May 2017

Had RALP early January so i am almost 4 months out. Exact same situation as you but I go thru a few more pads. I am very active in terms of getting up and down throughout the day and most of my problem is sitting to standing and those first few steps. Even focusing on kegaling does not help because as soon as I relax, I tend to squirt out a shot. I thought I would be further along at this point and it is frust5rating as hell to have to change underwear 2-3 times a day because a squirt missed the pad.

The alternative is worse I guess. Nothing to do but be patient and keep kegaling. The nerves are going to heal on their own timeline.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Hello,

My husband was recently sent to a PT for additional incontinence exercises and advice. It really helped...you may consider it. My husband's surgery was in mid-January and he is now using only one liner a day. He also does a lot of moving around at work which caused more leakage early on. The Kegels make a huge difference, but you might consider asking your doc if they can refer to a PT who specializes in incontinence.

Best of luck!

GeorgeG
Posts: 127
Joined: May 2017

As above, keep positive. Even a very skilled and experienced surgeon will tell you that it takes up to 18 months to fully recover urinary control (mine has done 4,000 and told me this). Nerves have to heal, muscles have to strengthen and most importantly your brain has to learn how to use the pelvic floor for complete control in the abscence of the primary spincter that was removed during surgery. It's similar to stroke recovery where rerouting will occur in the brain and nerve pathways.  

Best of luck.

Greg K
Posts: 2
Joined: Jun 2017

I too feel the same way as u second guessing my decision to do anything so depressing

GeorgeG
Posts: 127
Joined: May 2017

At the moment of cancer diagnosis our lives will never be 100% the same. We have a new normal from that day forward and can never have it all back exactly as it was. But you know, we never got a gaurantee at birth and most of us will face some kind of issues as we get older. Life is not a game of perfect (golf analogy). A whole bunch of people get big problems as soon as childhood so if we are in our later years and still kicking then things are not anywhere near as bad as they could be and if we are here on this forum that means we are still beating our disease.

It is important to understand the extent of your specific disease along with the likely outcomes with and without treatment. Then evaluate the side effects and their likelyhood with various treatments. Then you can decide what is the most important to you, what are your priorites. Then find the best doctors that you have access to and decide, on balance what path is best for you and don't look back. Just remember that if you do your homework and are honest about your goals and priorities then be happy that you elected treatment and be glad that you have a chance to survive the PC or that you opted for no treatment and are really glad for no side effects. If you have side effects but still have a chance at cure or significant delay, is incontinence really better than metastatic disease and all that comes with that? My neighbor has metastatic disease and he would trade for my pads in an instant. Ironically, he is one of the happiest guys I know and he will have one half of a normal life expectency and will never meet his grand kids. Between my wife and I we have done both. It's hard for sure but don't look back. If PC was most likely going to take you or you could not live with even a 20% chance of failure and you then chose treatment then be glad for your excellent decision and if problems arise, work the problems and be glad for another day with loved ones and doing things that you love (even if you have to change those things as we did). Iv'e been through all of this - ED, incontinence, scar tissue, fatigue, sweating like crazy, crying during cat food commercials ... Sometimes it's not easy but I'm sure glad to still be alive and so far, any of those problems are workable and way better than the alternative.  

For those that I read on here that they have regrets about having chosen treatment, my heart goes out to you. I hope that you find peace with what you decided and how it turned out. I hope you find doctors that can help you improve. For new people facing this tough new reality, do the hard thinking and soul searching up front while you still have every option available. Be really honest with yourself, then decide and don't look back. Embrace this challenge and work the problems, then enjoy every day that you have left. We never knew how many days we were going to get from the beginning and for some it really turned out lousy (think childrens cancer hospitals). I for one am glad to have another day to talk to my kids and hug my wife and a chance to keep working the problem. ED and incontinence etc can be irritating. I get up 2-6 times a night on ADT and sweat so bad that I change clothes up to 4 times a day and so on but at least I don't have to be in the first boat charging the beach at Normandy or I wasn't the guy in the other lane when the drunk crossed the center line. My wife has been dripping into pads for over a decade after her hysterectomy and when we compare (when I was recovering), hers was worse than mine so I go back to what I was doing and don't complain.

If your still up and around and have options - go change the world, or at least take your wife to the movies and stock up on pads, I got really good deals on eBay.

Old Salt
Posts: 720
Joined: Aug 2014

for the thoughtful response. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

Brilliantly written, George.

I was recovering in a wheel chair from an accident years ago, and the oddest thing kept occuring: Any time I would lament my inability to walk without a walker, I would pass someone in the mall or wherever who was quadraplegic.  It happened over the years not once, but many times, and the impression just stuck with me.   My mom had a line she used to teach us as kids (she grew up destitute in the 1930s, during the Great Depression):  While crying for having no shoes, I met a man with no feet.

I was at my physical therapist's office one day a few months after getting out of two month's impatient time for the trauma, sitting on a treatment chair.  A preppy guy, maybe 30, was there a few times when I was, always griping, full of anger.  He had TENNIS ELBOW.  The therapist said one day when I left he asked "What's wrong with THAT guy ?"  (I was 30 also.) 

She told him: "He was ejected out of a car window and run over.  Back broken, and has two adjacent disks totally collapsed and inoperable. Couldn't breath without a machine for weeks, and can barely speak now due to lung imparement and probable brain damage.  Can't move his right arm due to scar tissue from 13 rib fractures.  Right shoulder was fractured and then pulled apart on accident by another threapist in ICU, and has grown back together deformed.  Left leg nearly torn off, and kneedcap was torn off but reattached.  Can't bend left knee yet more than about 15 degrees.  Surgical wire that put his hip back together has ossified the bone and is causing spurs to jut out of his incision area.  Too weak to stay awake more than a few ours at a time, has blackouts." 

She said he never compalined again after that conversation.

The after-effects of cancer treatments leave us with reasonable disappointment, even an occasional bit of depression.  I had terrible clinical depresson and required medication for years following the wreck.  Today, 2.5 years after DaVinci, I wear (usually) 1 liner throughout the day (the thinnest adult protection you can buy).  But BEFORE DaVinci, because of BPH, I had to wear several.  So the net effect of DaVinci for me was much BETTER urinary control than before.

Our diseases and outcomes are all relative. Always.  I have watched two friends die of PCa, and know that my little case of Stage II PCa was pretty close to nothing compared to what many here endure.

My view is that I'm about the luckiest man on the planet,

max

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thank you George et al, for your deep thoughts and words of inspiration.

Max - My mother used to tell me the same adage about crying for shoes til meeting a man with no feet. She was born ten years before the depression, and both her brothers fought on WWII. My father was 21 when the depression hit and had no family to support him. Indeed, life was much harder for most then than anything we have seen in our lifetimes.

But I had an experience not unlike yours, call it a strange coincidence, the hand of god, or angels.  I had a severe leg injury twelve years ago... nothing anywhere near as severe as your injuries.. and I do admire your fortitude for what you have endured. My left leg was crushed between a truck and a wall. I was bedridden for several months, then progressed thru wheelchair, walker, crutches and a cane over the next several years.  But what amazed me was that once I was up and about, the angels put before me three, count 'em three (like a Dickens tale) men who had lost their left leg. This was not at PT but in public places and at family gatherings. One was obviously a recent amputation, as he was struggling with crutches. Another was so accustomed to his condition that he carried his prosthesis with him in his wheelchair and switched back and forth as seemed appropriate for the moment.

Since then - and all this happened within a matter of just a few months during my recovery, and though I have since seen other amputees with a variety of prostheses, I have not again been face to face with anyone else so similarly stricken. I was in awe that in a short time the heavenly powers had put before me three examples of "there but for the grace of god go I". So I never complain about my condition. I do require a brace at times, but that is just my cross to bear. And now with the PCa I am totally incontinent and have had two surgeries after the robotic RP and still facing radiation. Life continues to put hurdles before me, but there is always a path forward, so I consider myself fortunate to still have options.

Thank you everyone in this thread for your thoughts.

https://csn.cancer.org/blog/269549

 

 

GeorgeG
Posts: 127
Joined: May 2017

Max

Thanks for the kind words. You have your share but I'm glad your still with us.

One of the things that gave me more strength and appreciation was watching my father deal with his colon cancer. I respected him already but in the last years I really learned what makes a great man. He passed a few years ago and throughout his 6 year battle I never once heard him complain. He told me near the end that he had a good life and that life is what you make it. He was also a depression era kid who at one time was homeless with his family and he fought in two wars. Doctors told me that they literally don't make them like that any more. Had his last surgery at age 89 and refused pain medicine so that he could spend more time alert with his kids and their families. We were the last in the waiting room on his long surgery day, tired sweating doctors came out to tell us about the complicated surgery but that he had done so well for a man of his age. Then the nurse said that he kept calling for me so I needed to suit up like an astronaut to see him. We all thought that something was wrong or that he had something so important to tell me because he never bothers anyone. I am covered from head to toe and go in to see him. There he is very alert and slightly aggravated and I said high dad, did you want to see me? He looks at me like it's just another day and he says "go get my teeth". I know that you will figure out where they put my s$&@ and find my teeth. So it was back to normal even in the recovery room. He was shoveling the snow in his driveway within 4 weeks and he was now 90. Admittedly, I might not see his 92 years but I have vowed to have his attitude for the duration and I will keep working the problem to get as many as I can. Maybe the doctors were wrong. Maybe they made a few more after him.

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

There are some wonderful posts here.  I know it is difficult to accept, but EVERYTHING that comes into your life is for your spiritual benefit, even stage 4 cancer.  It is easier to understand this if you do not look at life and death as the beginning and the end, but as just markers along the way.  Spirit does not die, it goes from eternity to eternity.  If you celebrate all that comes into your life with gratitude, including cancer, you open the door for miracles to happen.  You bathe the cancer in healing positive love vibrations that invite healing.  A negative atitude in any aspect of your life will promote suffering, hasten the onset of disease, and block any assistance from Highest Spirit, or God if you prefer.  My spiritual lessons from my stage 4, Psa 300 with matastases over 75% of my body was not about the cancer.  It turned out that my spiritual lessons were to be from the HT.  As a long time meditator, I had learned to disconnect the mind and not allow the onset of depression.  The gift of severe Bipolor Manic depression led me to a spiritual path and practice of meditation.  However, the HT took all my control away and there was no longer a safe controlled spot for me to go to.  Highest Spirit (God) gave me a new oportunity to surrender at a higher level.  True, with some resistance, I finally learned to accept that I was NOT in control and never would or could be.  I totally surendered to "what is" and what I was being given.  The spiritual lessons took one year, and then as suddenly as they came, they left.  All I had to do was surender, accept and celebrate.  I reaced a new level of spirituality and surrender.  The spiritual lessons will come to all of us.  We cannot chose the curriculum, we can only chose WHEN we want to accept the lessons, we cannot chose which lessons we would like to have.  It is ALL for our benefit.  Those who celebrate those lessons do not suffer; those who chose not to participate do suffer.  The choice is always yours.   Love, Swami Rakendra

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

George,

You have summarized into a sort post the life of a PCa survivor. It is concise and real. It is just wonderful.

I rarely talk on past experiences on PCa with my wife but she can sense my worries when my next move is just to start. Instead of inquiring she simply reminds me that, "... think how well you have done. It is already 17 years and you're still fine".

True. At diagnosis I mimic seeing me walking alone in a separate path on the way to a destiny, which was not the same as those walking around me. Theirs was a separated path aligned to a different end. Your post gave the opportunity in reviving my experiences, reviewing of my path and my newer me.

Thanks,

VG

GeorgeG
Posts: 127
Joined: May 2017

VG

I am glad for your reflection and growth. As far as our loved ones, they suffer with us. Part of our growth is to understand them and help them deal with this. It's a tall order but we can do it. Sometimes I think that cancer scares others more than us. I have been on both sides.

Ironically, I see so many around us that do not have any significant health issues, they face no known threat to their mortality but yet they are unhappy. They suffer in their health and cannot embrace the gift that is their health. Not all of course but many - I do know some happy grandmothers in their 90's. For most of us here we get a shock to the system that shows us in very real terms, in stark scary numbers how mortal we are. If we accept our situation and learn to become at peace with it then we can get energized to live every single day happier and more grateful than before. This is irony at it's best. We may have to think about dying to live happier. In the end we may live with more peaceful hours filled with more happiness than if we had lived another decade but focused on the wrong things and not realizing our gifts. You don't know me but I was a career engineer and business manager, I never thought like this before. I can certainly hang with the best of them citing statistics and debating the pros and cons of various treatments. I am doing it all again this week as more decisions have to be made. My cancer is teaching me a lot. I feel that I will know myself better for it. I don't know that I will ever be glad I have cancer but I am going to do my best to follow my fathers example of strength and determination and his guidance that "life is what you make it, regardless of your circumstances".

For those of you facing this in the early stages, allow yourself the five stages of grief. You will be mad, you will be scared, you will have days of hope, etc. Do this on your timeline. Get busy with your research and find competent, kind doctors and hospitals to help you make an informed decisions and then as I said, select your treatments or AS and then be happy about your choices. I know that some of what I am writing here may not resonate with everyone, especially as the confusion and anxiety swirls around you but after the technical decisions, the real work begins. I once read that your healing cannot begin until you accept your condition, embrace it and become at peace with it (Dr. Weil I believe). I did not understand it then but I think I do now.

We are not brothers in suffering, we are brothers in growth.

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