Struggling and looking for help

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vs1vs2
Regular Member


Date Joined Dec 2008
Total Posts : 60
   Posted 1/30/2009 9:34 AM (GMT -7)   
You folks have helped me many times without knowing.  I wished I had found this forum last May(08) when this journey started.  My signature explains most but I will fill in the current struggle.  I hope this is not too graphic.
 
I had surgery Oct 7,08.  I certainly wish I could have waited until I was in my 60's if I had to get this.  I mean no disrespect to all of you 60's gents, I just wished I could have had another 15 years or normalcy first.  As all are told, I was told to expect ED for 6 mo and then hopefully it would get better.  Well I got a reprieve when I got my first erection 2 wks after surgery.  Man was I happy.  I behaved turn and waited until 6 wks to try anything.  I was just happy I could get there.  My wife of 28 years has been great, promising to do whatever it takes.  The first time we had IC it took along time to get to the end and then............nothing.  It felt great and normal, except it took alot of focus.  But when I reached the end - nothing.  Since then, it seems to take alot to get me going and I often lose rigidity if I am not concentrating.  This seems like such work and all for nothing when I get to the end.  My wife says I still take care of things were she is concerned.  She says it is not as hard as before but it definitely works.  It seems to work less and less for me and I am getting very discouraged.  HJ or BJ produce ok orgasms but they are not great, and they take so much time.  IC has only been ok twice. 
 
I feel broken and I am really struggling.  Part of that struggle is so many here have ED problems and I feel lucky that I do not need drugs and maybe I should just be happy with that.  Does this get better?  Do they orgasms get better?  Does anyone else have this problem?  I would really appreciate your input if you have any experiences.
 
Thank you all for so much,
Tim
Age at Dx:48, currently 49
PSA May 08 2.96
referred to uro
PSA June 08 3.44
biopsy 7/25/08-29 core samples
path 7/31/08-8 of 29 PCa/10% involved L/R base and mid
high grade PIN in apex/seminal vesicles clear stage GS 3/3=6 pT2a
10/7/08 robotic at Cleveland Clinic-Dr. Kaouk
10/10/08 path GS 3/3=6 pT2c
cancer contained/neg margins
PSA Jan/09 .03


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 1/30/2009 9:52 AM (GMT -7)   
Tim, with the sex part, you are doing remarkedl well less then 4 months from surgery without the use of any drugs, etc. There would be men here envious of your ability on your own. Everyone will tell you, it takes time, and that doesn't always mean simply days and weeks. It helps to have a good wife like you describe to work with you with love and patience. That is a big plus for you too.

Some of the other men here, much further out than you or I, could probably give you tips and answers to some of you inquiry. With many, it does improve over time. Hardest part for me, and I am sure I am no different than any other man that had PC surgery, is that it is never ever going to be exactly the same as before, and sometimes, even though I know that, still hard to accept and deal with. That was then, and this is now. I have to tell myself that often.

Good luck to you, sounds like you are too pretty darn good on your own.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 1/30/2009 10:28 AM (GMT -7)   

Greetings, Tim.  Glad you are a joining the group - I have found both the guys and the ladies here at healing well to be very understanding and very helpful.  Also, one thing it has taken me about a year to learn is that we are taking on a disease here and nothing we can say or do to defeat this disease is out of line.  It is sometimes difficult to say some of the things we need to say, but what I try and remember is that my journey and how I have dealt with it may help others so they need to hear it all - the good, the bad and the ugly.

With that said here goes and I trust it will be helpful.  I am just a little older than you - 55 when diagnosed and just had my 56th birthday.  I have a very understanding wife who has been wonderful - I could not have made it without her.  We have been married 35 years and I used to kid her that when she turned 40 I would trade her in for 2 20's!  Once you make it that far you realize that there is no way you'd trade what you have TOGETHER for someone else no matter what you think they might have.  All that to say - my wife has been a great help in this journey and an integral part of my recovery.

I had surgery on Monday, spent 2 nights in the hospital and went back 10 days later on a Wednesday to get my catheter out.  My doc gave me the good news on the pathology report and also gave me some samples of Cialis to begin taking for rehab purposes.  On the following Saturday morning - less than 2 weeks post surgery - laying in bed in the morning with my wife just holding me, I felt a very distinct stirring and got a fairly decent erection.  We let it go down and she got it hard again.  It was not as firm as before surgery but I thought at only 2 weeks post-op it was great.  We called the doctors office and talked to the nurse and she said if I didn't need the Cialis, not to take it.  She also said not to do anything with the erection til we saw the doctor at the 6 week point. 

In retrospect, we believe that was a mistake.  We should have taken the Cialis as instructed by the doctor and he affirmed that at our next appointment. While I could get an erection, it got more difficult as time went on and it never got beyond about 80% of what it was presurgery.  So, I started taking the Cialis and it worked great.  Presurgery erections were back and the pills lasted several days.  When I inquired about getting Cialis at my pharmacy I was told they were about $11.50 per pill and my insurance would not pay.  Members of this board often refer to ordering their meds from All Day Chemist (ADC) in India so I inquired from them about ordering there.  They can not ship Cialis (generic equivalent) to the USA so I ordered Levitra (generic equivalent).  My doc said if it worked that was fine. 

I did have some side affects such as face flushing and stuffy nose and a slight headache.  What we have settled on is that I take the 20mg tablet 2 times a week at bed time and I never even know that I have any side affects. If I have them I sleep right through them.  I am ready to go anytime I need to be.

Now, regarding orgasm.  My experience is almost opposite of yours.  Most of the time, I have regular orgasms like I had presurgery only of course there is no ejaculate.  Occasionally I would say they are even stronger and more intense than normal.  However, there are a few times - I would say maybe 10% of the time - where there is nothing.  You just finish and there is nothing.  Fortunately, this is very much the exception rather than the rule.  No rhyme or reason as to why - it just happens sometimes.  Can't tell when it might happen until it happens and there is nothing.  I'm just glad it is very limited and my wife says she can't tell any difference at all. 

Tim, trust this helps in some way.  If you have follow up questions there are lots of people here to help.  I'll try and look back from time to time and if I can help with any followup I'd be glad to.  Best Wishes. David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 1/30/2009 11:06 AM (GMT -7)   
vs1vs2:

Dude, sounds like you are doing pretty well to me. You are still in the WAY early stages. For me, the dry orgasms were a bit of a surprise (I guess they forgot to clue me in on that part). I do HJs OK, but still no real IC. My reduced length has been shocking. Part of my problem was that I developed peyronie's just before I was diaganosed with PCa. So I have a double whammy going on. I've got a busted pump AND a bent pipe. I think the bent pipe has telescoped a bit and that might be the issue with the length.

I am a little older than you (but I'm not dead yet!) and we are on the verge of being empty-nesters, so I am not worrying about it too much. I am making progress, and enjoying life, and if I get all the way back great - if not, we'll live. (Maybe the wife will have to get a pool boy - even though we don't have a pool!)

All I know is - 1) they keep telling me you can make ED progress up to 2 years after surgery; and 2) that thing in my pants has gotten me into more trouble than it's probably worth anyway, so if it is broken, that's just one less thing to worry about.

But stay positive, keep working at it, and my guess is a year after surgery you'll be darn near back to normal.
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
              Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
              cancerous and the 6th was suspect.  
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.


Bluenose
Regular Member


Date Joined May 2008
Total Posts : 260
   Posted 1/30/2009 11:08 AM (GMT -7)   

 

  Tim, just like David says.....get ya' some Levitra, or any of the other of your choice. (I like the Levitra just because it works for me) Give the stuff a shot. With your description of your performance you should do very well with one of those ED drugs.

 Dont get down on yourself, give yourself time....the way it's going for you it'll happen. Get yourself some of those wonder drugs!

 As far as orgasm, David's description is very much the same as mine only differning in the fact in my case they are more stronger and intense most of the time. Other times, it's just over and we move on.......Good luck to ya' brother.

 


 
  age: 53  Pre-op PSA Feb 08' 5.0, April 08' 4.1
  Biopsy 5.1.08, 5 of 15 cores postive, T2a, Gleason 3+4=7
  DaVinci performed 7.29.08
  Bladder sling installed, umbilical hernia repaired during surgery.
  Path report, "cancer fully contained, margins clear".
  Cath removed 8.8.08, ED therapy begins 8.9.08
  100mg Viagra three times a week, pump for ten minutes daily
  and hold for ten minutes.
  8.16.08 switched to Levitra 20mg, immediate results
  9.15.08 Pad free at night, one thin (light) pad during the day
  9.18.08 1st Post-op PSA Undetectable Zero's....Yes!
  12.22.08 2nd Post-op PSA  Zero's still...
  Pads gone 1.3.09, finally found the courage...Thanks ya'll
          ".....tryin' to reason with hurricane season...."
       


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 201
   Posted 1/30/2009 6:28 PM (GMT 0)   
vs1vs2-you're way ahead of where I was in the ED department 3 1/2 months after surgery.
Hopefully, the quality of your orgasms will improve as the ED improves.

In my case, the orgasms have become less and less satisfying over time. Frankly, they aren't worth the mental concentration it takes to get there. So, I've pretty much quit going for them. The wife and I still enjoy sex though. And, on the positive side, my libido doesn't drop off like it did when I had orgasms. I maintain a higher level of interest in her, and she likes that. :)
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/30/2009 11:51 AM (GMT -7)   
Tim, at 16 months, I still haven't reach the stage of having erections, but I can tell you that my orgasms continue to get better and better the more I have them. Maybe a course of aggressive masterbution, or mutual foreplay to climax with your wife as often as possible would help to retrain the brain to understand the feelings the sex act is producing now? Just a thought. That's what seems to have worked for me.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Ripandburn
Regular Member


Date Joined Aug 2007
Total Posts : 125
   Posted 1/30/2009 12:45 PM (GMT -7)   
Tim,

If you stay out here long enough you will find that everyone's situation is different. I am just a bit more than 18 months out and still struggle. The orgasms absolutely stink for me. The best orgasm that I had after surgery was through my own manipulation. It still wasn't much. I really miss the ejac*****on. In 18 months I have had 2 orgasms with my wife. She loves it however. I will use the Viagara, Cialis, and Levitra alternatives from alldaychemists. They work, but I hate the side effects. The best thing that I have found is the bimix. I only use .2 ml, but it's like old times. It can become a little depressing, but as everyone will tell you...over and over again, you are alive. The real key is that you have a wife that loves you and will do whatever it takes. We are very close in age, and I wish I had another 15 years also.

Try to stay positive and feel the love that your wife has for you. You will get through it.
53 years - 5' 11" 205 lbs.
T1c 3+3=6
DaVinci July 16, 2007
Bladder Sling installed during prostate removal
nerve sparing with both nerve bundles intact
all cancer contained within prostate nothing near margins
11 weeks post-op - no more pads
all PSA's since removal < .1 - Undetectable


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/30/2009 7:03 PM (GMT -7)   
Hey Tim,

All of the cues are different for me, that includes knowing when my bladder is full and the whole sexual issue. I think it is the same with you. You just have to give it some time, learn the new feelings, and then learn how to deal with and control them. The fact that you are potent is a big advantage.

It is all different now, but it is fine, you just have to learn about your new self.

Thanks for asking, and please continue to tell us how things are going wtih you.

Best to you both. Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


vs1vs2
Regular Member


Date Joined Dec 2008
Total Posts : 60
   Posted 1/30/2009 10:06 PM (GMT -7)   

I feel like I offended some here and I did not mean to do that.  I know that because I do not necessarily need drugs that puts me ahead of others and I should be happy.  I do know that it is all relative.  I am where I am.  I know I should be happy and I am about many things but some of this sucks.  I wish they would have explained more about the side effects.  I don't think I would have changed my decision but at least I would have information.  I was so happy and then find out that it is even more frustrating.  I was looking for hope that it would get better or at least information.  Sorry for the offense but I was feeling a little frustrated.

Tim


Age at Dx:48, currently 49
PSA May 08 2.96
referred to uro
PSA June 08 3.44
biopsy 7/25/08-29 core samples
path 7/31/08-8 of 29 PCa/10% involved L/R base and mid
high grade PIN in apex/seminal vesicles clear stage GS 3/3=6 pT2a
10/7/08 robotic at Cleveland Clinic-Dr. Kaouk
10/10/08 path GS 3/3=6 pT2c
cancer contained/neg margins
PSA Jan/09 .03


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 1/31/2009 7:04 AM (GMT -7)   
Tim, I don't believe any kind of apology is needed from you. There is not a one of us men here, that don't go through periods of extreme frustration, depressions, anger, fear, uncertainty, etc. once we were forced into the world of PC. No one came here willingly. If one plays the role of denialist, when reality hits, it hits extra hard. If you accept all the unpleasant aspects of PC upfront and informed, then you get hit that way. That's why I think it is critically important to have support. That can come in the form of a wife/partner, good family if you have it, good/trusted friends, and outside support groups - either in your local area or through wonderful sites like this online.

The hard part for me, and I am sure others, is playing the "what if" game, what if things were different, what if I chose something else, etc. I do it too sometimes, but totally non-productive. Cancer is a cruel master, doesn't care who or what it hurts, likes to upset the norms, likes to attack from new and unexpected angles.

Tim, just because your stats look good for now, and just because some of your side affects are better or worse than another, doesn't mean that you don't feel frustrations and fears and angers still. It only means you are normal, and you are dealing with Prostate Cancer.

Hang in there brother. You are fighting a good fight, and you are one of us.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 1/31/2009 7:06 AM (GMT -7)   
Tim
i don't think you offended anyone - don't worry.

I am exactly the same age as you. First, if you need to concentrate that hard to keep it hard and going, then you definitely need drugs. Getting an erection of just half the battle. Keeping it is the other half. Meds will give a guy in your situation a rock hard erection like you were 19 again. Enjoy them.
Also, orgasms take time. With intercourse, I find the orgasms are FAR less than they were before, with HJ they are FAR better, longer than before. I think the increased intensity of stimulation is needed post surgery. If you are getting usable erections sans drugs, using 50mg of viagra will make you a rock star and give you the mental and emotional freedom to relax and enjoy it again. Trust me, we understand the frustration and the sense of hard work just to do something that used to take no thought at all. You might change things up a bit - orgasm with her brings a nice sense of bonding, but on other occasions, make sure she is finished, then finish yourself off to enjoy a really good orgasm. ..with her by your side. Things have changed, but are not ruined. Use the chemistry. Most of us use alldaychemist.com for cheap viagra.
stick around
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 1/31/2009 9:09 AM (GMT -7)   
Recovery from surgery takes time and patience. Things will get better, my orgasms initially were very faint, now probably better than pre-surgery, but achieving them takes time, lots of stimulation, along with drugs and or injections to achieve a firm erection. But as time passes, less of these are needed. The 12 month mark was kind of a turning point for me. Hang in there, it will get better.
Randy
46 you when diagnosed, now 48
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01, 9 Month PSA 0.01
One Year PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Occasional Success with Oral Meds
Success with BiMix


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 1/31/2009 4:41 PM (GMT -7)   

I'm in my 60's and you offended me not a bit.  I wish it could have waited for you to be in your 60's.  It sucks at 60 and it's just the ***** at your age.  Having said that, don't ever, ever give up.

Regards,

Bill


August of 2006, PSA up to 4.2 from 2.7 one year ago. 
October free and total PSA 12% free and 5.0 total.
A month, or so later, 4.7.
Late in the year decide on Image Guided IMRT.
Begin 43 treatments on January 23, 2007 and finish on March 23.
 
Wow, almost two years behind.  I had a typical radiation bounce that
scared me, but it seems to be ok.  PSA is about 1.0 which is ok for
a rad guy at this stage of the game.
 
Got my FAA medical certificate back four months after starting my
treatment.  It's still a First Class, just jumping through a few hoops.


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 2/2/2009 7:38 AM (GMT -7)   
in this mornings paper, Broward Hospital in Ft. Laudedale had a full page ad about Cyber Knife. I began the "what if" thoughts several men wrote about. Tomorrow is the 4th week since my robotic surgery. I'm very pleased with the surgeon, hospital and how I was treated. Like several other men I have had strong erections with the doctor prescribed Viagra 3 times a week. Like others I was told "no sex for 6 weeks". At least I have hope. Men, at least we have cancer on the run. My biggest concern is that I leak. How can I even think about sex or intercourse if there is leakage. I wear the diaper at night even though thats when I'm the dryest. In the old days, pre surgery, I had a feeling, an urge to urinate. Now I have no feeling. I feel a leak first. Right now I swing from happy to sad, back to happy. Men, what say you.
 
Sam 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 2/2/2009 8:18 AM (GMT -7)   
Sam,
You are still doing so well for only being 4 weeks out of surgery, don't be hard on yourself. I am dry every night but still use a pull up, told my wife its my security blanket right now, hoping to wean off of that soon. Yes, it's hard to learn the new feelings or lack of feelings with urination after surgery. I have the opposite problem, I start getting a strange urge feeling, but can't tell if its a false alert, just a dribble, or niagra falls on the other side. It just takes time, I know we all get sick of hearing that, but every body heals differently. Again, you are doing well, and the back and forth feelings, very normal and expected. Hang in there brother.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


AstroNerd
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 2/2/2009 3:00 PM (GMT -7)   
vs1vs2,

I know what you mean about the 15 year thing... I'm 47 and can't help but want to scream "NOT FAIR"!!!!

Something to consider: While I was in the hospital, the guy in the room left of me was on the losing side of a 5 year battle with pancreatic cancer. The guy in the room right of me lost his leg to bone cancer and the prognosis wasn't good long term. We may have "issues" with our gear, but for most of us, we're not going to die from PC. Life is good.

cheers & beers,
Chris
Diagnosed on 9/23/2008, age 47
Gleason 6, T1c
da Vinci LRP performed 1/22/2009 at Moffitt Cancer Center
catheter due out on 2/4/2009

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