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41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 10/16/2007 10:12 PM (GMT -6)   
A quick update on my progress and...ok guys, and gals in touch with their husband's issues, I've got questions...
 
I got my cath out on 9/27 10 days post op, and I'm 4 weeks post op.  I have had some leaking, but not too bad relative to some here, but clearly not as lucky as those who say they have no incontinence issues.
 
I get some annoying dripping that seems spontaneous and gets worse in the evening.  When I'm up and about, it's like a very slow leaking faucet.  Sometimes a bit more leaking depending upon my activities.  OK, so I tried doing jumping jacks and that was a big NO NO! :)  I tried a bit of quick runs between walking and that wasn't so bad. Walking is ok.  Lifting and moving some boxes in the basement was tolerable.  Sitting or lying is perfect.  I'm only using one small pad a day, but wouldn't feel comfortable at all without it, but it's not saturated either.
 
Immediately after the cath came out, I felt like I was holding it so tight I could make a diamond in my d*&^.  I wondered the first night how I could go to sleep figuring as soon as I did the flood gates would open.  But my continence at night was perfect.  Completely dry.  And getting up and going to the bathroom was fine too.  Fortunately, that feeling of holding it constantly has mostly gone away, but I do consciously tighten up before a sneeze or a cough or standing up, etc.
 
Actually, my continence is best in the morning and I feel rested because I'm not waking up to go to the bathroom in the middle of the night, except for maybe once.
 
But the issues I have are as follows... 
 
I feel a lot of discomfort in my penis at times.  I can't figure out if it's still from the surgery, the catheter or from the drips, but it's irritating.  I think it's the latter.  By the end of the day, I feel soreness I can only describe as in my urethra.  Has anyone else experienced such discomfort?  confused It is definitely mild or non-existent in the morning, but builds during they day.  I'm not taking any ibuprofen or tylenol at all.
 
This morning I did try to stop my stream when I went to the bathroom.  I was able to do so several times, but then it was somewhat painful followed by a bit of pinkish urine which I really hadn't seen for awhile...bad memories of the bag!  Anyone ever have this? confused I'll try again in the morning.
 
On the ED side, I only wish I was having the short term success that some here have had.  I have had none yet. I took some Levitra a few times, but no help from that either.  Actually, I feel as though I've less blood flow down there in a non-stimulated state than before surgery.  Again, has anyone experienced this?  confused It seems less firm than before in general, though I don't notice any difference in size like some have said (and even better, nor does my wife! yeah ).  But since I'm not getting any notable excitement, size really doesn't matter! 
 
On a positive note, I had to see if the engine turned over at all.  And I didn't wait 6 weeks like the doctor said.  I only waited 2.  And it turned over alright.  I was surprised with no erection and no ejactulation that I actually felt an orgasm, contractions and even had to catch my breath.  Weird but satisfying none-the-less.  And then it was a bit painful for a bit, so I wondered what was contracting?  confused   And if I can get this level of sensation, is it a good sign or is it typical?  confused I rather think it is probably typical, but I'm being hopeful.  And the pain wasn't bad enough to keep me from doing it again, and...ok, well not that much!
 
Anyway, I can't believe I'm typing this but what the heck.  It's what everyone is worried about and what everyone wants to know the reality about.
 
I read some posts and I feel like I'm really lucky.  I read others and I'm jealous as heck. But overall I'm feeling good and getting back to normal routines as much as possible.
 
I'm lucky I work from home when I'm not traveling, and I have been working since the week post surgery.  I had moved my office to our guest bedroom and was working on the bed for the first 2 1/2 weeks.  Then I forced myself back to my desk when I spilled a cup of coffee on the bed and had to strip the sheets and comforter.  My son was so happy to see me back at my desk and beamed that I looked like I was doing really well.  That made my day!  Of course it was followed by his asking me if it meant that I was ready to do everything I was doing before surgery.  I said I didn't think I was ready to ride a bike yet.
 
I'm going on my first business trip Nov. 1 to Baltimore and then to San Jose the following week.  I figure a plane ride should be fine except getting that bag into the overhead bin.  Haven't lifted anything up over my head since surgery yet.
 
Well, that's it on my progress.  I keep reading everyone's posts and am so impressed by the dedicated responders on this site.  I can't keep up like some of you, but try to make up for it by typing essays when I do get going :-)
 
Good night everyone.
 
BTW, for those that are new here...be good to yourselves, as it's a long road to treatment and recovery. At first I was totally depressed and sad over my diagnosis and fearful of choosing the wrong treatment for me and scared to death of the side effects of treatment.  Though I have my moments when I wish I had no side effects like the Proton patients, I reread my own post on the decision I made and remind myself why I chose surgery.  I am doing so much better emotionally now that I'm on the road to recovery than I was doing when I was trying to make a decision and flipping like a fish from one to another.   Be strong and pace yourself.  The good days will eventually out-number the bad ones!
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 10/17/2007 5:13 AM (GMT -6)   
41Diagnosed,

The pink in the urine stream is likely blood from the sutures that reattached the urethra.

Jumping-jacks and running at week 4?
I understand you or 41....  "Ah youth, it is wasted on the young!"

Still, my experience with several abdominal and pubic cavity surgeries
can be best summarized:
ONLY WALK AND DO SITTING ARM EXERCISES UNTIL WEEK SIX!
I did go back to work at week 5 - but I let the staff lift anything over 20 pounds for the next two weeks....

As for riding the bicycle...... 
....perhaps you should just wait until you are stronger
   .... and the many many internal stitches heal
  ......and just run along beside your son...... :-)

When you see pink in your urine, take it easy until it clears and
   ... ease back to that level of exertion that caused it.

The post RP sense of ejaculation is followed by a contraction of the testicles.
Without going into the practice of Sumo Wrestlers tucking their testicles
 into their pre-pre-adolescent nooks .....  I'll just say it sounds normal. 
SwimMom can likley give you better information.

It is great to hear the news of your rapid recovery!
Godspeed!

CCedar
ICTHUS!

2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 10/17/2007 7:12 AM (GMT -6)   
Chas, I'm sorry but I was cracking up when you were talking about urinating during an orgasm. After I got my first Trimix injection I did the same thing and couldn't get it to stop. I was running for towels.

41, I had blood in my urine as well but it usually followed a BM that I had to push or strain on. As for the kegals I always did them while urinating and would do them here and there in the car when I remembered. I too feel I was very lucky since I am fully continent at 2 1/2 months post surgery.

Just keep positive and enjoy yourself and your family!
Age 44
PSA 4.8
Gleason 3+3=6
T2
Biopsy - 3 of 12 (2@20% / 1@80%
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke with in 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/08
Positive Pathology Report 
Near left side nerve bundle
New Gleason 7
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales
 
9/13/07 - 1 Post PSA Undetectable less than 0.1 
 
9/17/07 - Pad Free! 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/17/2007 8:29 AM (GMT -6)   

Well, might as well make this an update thread, as we all are with a week of each other.  :-)    I'm Week 3 plus 2 days surgery and 12 days catheter out. 

I am dry all day and have been going without pads during the day.  No accidents in over a week now.  At night I had some problems for a few days of not waking up in time to go, and peeing some until I roused up and cut it off.  My bladder capacity was about 2 hrs, before having an accident, but the past 3 days has gone to 3 hrs or so, and I've managed to wake in time, hence no leaks for the past 4 nights.  Last night I slept  the best I have in a long time, 3 hrs to the first pee trip, then 3 1/2 hrs, then 4 hrs.  This is a far cry from the hourly trips I made pre-surgery.  I still wear a pad at night, with a undercover pad on the bed, just in case.  All in all, I am really pleased with the continence issue.

Now then, then Ed issues.  I have been able to see a little chubbiness first thing of the morning and during my morning shower, but nothing useable.  A little milking of the penis from back to front will make it grow a little, but it subsides fairly quickly.  Erections during the night or at any time don't exist yet.  I began 25mg Viagra the night of catheter removal, and tried my first dose of 100mg Viagra Monday night, at the 3 week mark, to see if we could manage anything.  We tried just about everything to stimulate me but no results, nope, nada, dead, dead, absolutely no response.  A little disappointing I will admit, but the efforts will continue.  The stimulation felt really good though, but it wasn't carried to climax, so I haven't experienced the erectless climax yet.  My doc plans to prescribe the pump at the 6 weeks checkup, and we will see what happens from there.  At some point after that, I want to go to the injections, both to rehab and to reestablish our sex life.

Anyone have any advice from their docs or experience as to the earliest to start the injections?  I really think they would be more rehabilitating than the pump, from my reading here and elsewhere.   Summing up, the goals are treatment first, then continence, then ed, so I had checkoff the first 2, at least for now, and am at the third step in the process.  I can live with that...


James C. 
 
Help support the forums so they can support you:  http://www.healingwell.com/donate 
 
Age 60 
4/19/07   PSA 7.6, referred to Urologist, recheck 6.7 06/05/07
7/11/07   Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07   Path report:  3 of 16 PCa, 5% involved, left lobe , GS 3/3:6. 
9/24/07   Retropubic Radical Prostatectomy performed 
9/26/07   Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07  Dry daytime, small leak if I don't wake up in time (@3 hrs.) at night.
10/15/07  ED- 25mg Viagra nightly-no joy 
11/15/07  1st PSA scheduled


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 10/18/2007 7:21 AM (GMT -6)   
Hey James,

My doc starts the injections at 6 weeks. Sort of scared about it, but can't stand the lack of response from stimulation. It seems each doc has their own protocol for ED rehab. I'll let you know when I know more. My appt is scheduled in a month which is actually 8 weeks, but couldn't get in earlier.

Doug
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 10/18/2007 7:36 AM (GMT -6)   
chas036,

Wow, impressive progress on the ED front, though I can see the difficulties combined with the incontinence issues. It just amazes me how all over the map everyone is. All the talk to me pre-op about my being young and in great shape and how well I would do really makes me wonder. Age doesn't really seem to be the biggest factor.

I feel I had a great surgeon. Catalona is considered one of the top 3 in the country. Nerves spared and good pathology. So I wonder why I am having so little response, and yet I also am greatful that my continence seems to be fairly good. Still, I wanted to be one of the people who had no issues there either.

I keep reminding myself that cancer doesn't leave people unscathed. And that we need to accept the side effects in favor of the health we hopefully regained by going through the treatment.

I suspect for you the incontinence issue will improve, because your early posts sounded so good there. Maybe just part of the healing process that it's gotten worse before it will again improve.

Stay positive...sounds like you got one of the big two issues beat!
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 10/18/2007 7:50 AM (GMT -6)   
hey guys,

if you are up for some real time chat at times, feel free to add me to your IM list. sometimes it's hard for me to find time to read all the posts and reply...work is very busy for me.

my yahoo email is also my yahoo mssgr name. if you use something else like MSN or AIM, i am on those too. it's how i communicate with most of my co-workers so i'm on most of the time. i just added kdnole to my IM list, since he has his email here too.

if you've never heard of it, i use trillian for IM which allows you to combine AIM, MSN and Yahoo Messengers into one, so you can chat with folks on any of these networks. you can also set up group chats.
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/18/2007 9:53 AM (GMT -6)   
Surgery was 8 months ago for me and all is working well. I was leaking for the first week but it immediately subsided. When I drank too much wine it would leak when laughing, coughing, exerting, etc, but that too has gone. Er no i don't always drink too much wine, only when I can, ;-). I did experience the leaking when have erections but that too has subsided. But I have included going to the bathroom as part of my foreplay...I know I lucked out here, but, now I live having completed surgery, HT, RT and the fun with hot flashes (sic), and the knowing that I have advanced disease. I think sometimes that I would trade some of these things for a better pathology result, but I thank God and live each day for what I have.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/18/2007 10:03 AM (GMT -6)   

41diagnosed said:

(if you are up for some real time chat at times, feel free to add me to your IM list. sometimes it's hard for me to find time to read all the posts and reply...work is very busy for me. )

I don't have a chat engine on my system.  A suggestion and alternative that might keep things a little more private would be to use the HealingWell Chat function.  I checked it out and it works well, it seems.  Click the Chat button on the Blue line to the right just above the Forum Quick Jump funtion above. 
I don't know if it has a notification function when someone logs in, like some of the others do, but it might be useful.  


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/18/2007 10:10 AM (GMT -6)   
Why is everyone so eager to have an erection so early? Curiosity is one thing but I'm reading over and over again, guys torturing themselves. READ READ READ. It takes time to heal. Sorry if I don't get it. I mean, its okay to be curious and all but to deny the human body enough time to heal a ganglia of bruised and damaged nerves is just as bad as lifting a 50 pound stone the day after surgery isn't it? Give your body a break. Sttimulation is a good thing. Expecting immediate results is hard on the esteem. Been there done it and it didn't alter the outcome. I still healed in "his" time, not mine! Good Luck to everyone. Most of all, relax a little. Vick's best advise to me has always been relax and let life happen. It's gonna whether we fight it or participate anyway."

Paul
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/18/2007 10:16 AM (GMT -6)   
because it's there..well, more correctly, because it isn't there.  It has been there at need or sometime even with no need from 13 years old or so, is wrapped up tightly into our ego and psyche, and it the main thing we worry about regaining, even if we lie and say being dry is first.   lol.......  well, maybe just saying 'it's a man thing' will excuse us from our seeming obsession with regaining function, even if we didn't use it much before, it is really important to regain it afterward, as a token of 'cure' and healing.  Geez, it does seem complicated, doesn't it?   lol

41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 10/18/2007 3:49 PM (GMT -6)   
With ya james on your last comment.

Regarding the chat, I've tried the chat on here, but I can't stay on it like I do on yahoo IM, and never find folks on it. Anyway, if you are concerned with anonymity I understand. I feel like the folks here are part of a very special community I joined when I was diagnosed and I am offering to be available to all of you. Sometimes you just want to say hey to someone who knows and understands what you are going through. And sometimes you want to say something that isn't edited or available for everyone to view.

That's why I offered up my IM. For those who use chat engines, it's like picking up the phone to say hello, only easier.
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 11/8/2007 8:03 AM (GMT -6)   
just a quick update before I get back on a plane to head back home to chicago. i've been traveling for work for the last two weeks... sunday-wed Napa Valley; thurs-fri Baltimore; sun-thurs San Jose. airport concourses, delays, bags in overhead bins, sitting on 4.5 hour flights with no more than one trip to the bathroom, late evenings with co-workers. i'm in my 8th week post surgery. so overall, feeling pretty good about getting back into a more normal rhythm of life.

i have a pad in my underwear, but it's a very thin one. i pretty much go all day with the one pad for protection. i still get more drips in the evening, but still nothing that significant. i also find i can't keep going in the evening like i used to. i'm going to bed around 11p rather than 1a.

i do seem to drip more after going to the bathroom, either way, than i did before. just takes longer to get those last drops out. once i open the gates, they seem not to want to close and tighten up all the way immediately. so i find i use the stall so i can wait a little more easily. i have used the urinal too, and i don't worry to much if there is a bit of dripping after since i have the pad. but honestly, i can't wait until i have no dripping to worry about. i hope that day comes.

the big issue for me seems to be ED. just not getting much response. twice i've had some response with levitra, but not much and only for a short time. i remain jealous of the guys with responses soon after surgery. next friday i have my follow up with the doc. i'm sure he'll be more pleased with my progress than me. from everyone here, i know i'm doing ok.

wishing everyone here well and any newcomers. it all seems to be working out ok.
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 11/8/2007 9:44 AM (GMT -6)   
Go for the shot. It's worth a try and trust me it's great to just reassure yourself that it will return one way or another.

Age 44
PSA 4.8
Gleason 3+3=6
T2
Biopsy - 3 of 12 (2@20% / 1@80%
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke with in 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/08
Positive Pathology Report 
Near left side nerve bundle
New Gleason 7
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales
 
9/13/07 - 1 Post PSA Undetectable less than 0.1 
 
9/17/07 - Pad Free! 
 
10/11/07 - ED, Trimix injection .2cc Tooo much but it worked.
No luck with viagra or pump. 
 


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 11/10/2007 3:08 PM (GMT -6)   
I believe my doc recommends starting shots early. I have my appt this coming friday. Thanks for the encouragement.
 
42 yo.
PSA 4.65
Gleason scores from 4 pathologies of the same biopsy with 2 of 12 cores positive for cancer (if this isn't confusing to the patient...):
 
1) both cores 3+4 (Weiss Memorial)
2) one 3+4 and one 3+3 (Univ. of Chicago Hosp.)
3) both cores 3+3 (Mass General Hosp.)
4) both cores 3+4 (Northwestern Memorial Hosp.)
 
 
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.
 
and the winner is...post op Gleason score of 3+4.
 
Good pathology report with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  Amazing how something so small can cause such problems!
 
9/27/07 - Catheter removal...let the games begin...
 
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 11/10/2007 8:51 PM (GMT -6)   

  tongue Hey Doug,

Thanks for the update… it’s good to hear things are going well… and the travel plans turned out not to be a nightmare!!!  Keeping you close in thoughts and prayers

In Friendship ~ Lee & Buddy

 

Helping to keep Doug's Journey together....

 

On the road to recovery...  started by Doug *41 diagnosed


41diagnosed
Regular Member


Date Joined Jun 2007
Total Posts : 176
   Posted 7/24/2008 9:32 AM (GMT -6)   
I've started a number of threads, but figured this was the best to post my latest update.

(Does anyone know a way to merger your threads into one thread without messing up the chronology?)

Anyway, my doc recommends testing every 6 months for me. So here I am at a year since diagnosis and my 6 month PSA was .04. While I know that is technically undetectable, I did my usual (and not always so emotionally beneficial) in depth research and came up with a couple of studies that showed the predictive value of the ultra sensitive PSA assay for PCa recurrence. Of course, the most preferred group in the studies were those with PSA of .01 or less.

As such, rather than celebrating my "undetectable" PSA, my anxiety had steadily increased around my PSA concerns and finally I decided I could not wait until Sept. for another test. I went on my b-day and got a blood test and got the results back yesterday... PSA .02. So now I'm liking the trend and hopeful that the PSA trend downward continues and that perhaps the PSA nadir for me is just further out than the mean of 3 months.

I should also balance this perspective with the fact that my surgeon feels the ultrasensitive PSAs are not reliable due to "noise" in the readings. Therefore, he does not even do them. Since Dr. Catalona is one of the long term PCa researchers and developers of the PSA test, clearly I don't discount his input. The trick is finding the right balance between information and response to that information. For some of us "worriers" (not "warriers"), that balance is not always so easily achieved :)

Today I am celebrating that my PSA has gone down again!
 
42 yo. now
 
5/07 PSA 4.65 at routine physical
6/07 biopsy positive for cancer...Gleason 3+4...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision.  I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - Radical Retropubic Prostatectomy Surgery at Northwestern Memorial in Chicago by Dr. William Catalona.  Thankful the father of the PSA test was right here in Chicago.
 
Post op pathology was Gleason 3+4 with negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.  
 
9/27/07 - Catheter removal...let the games begin...
 
12/07 - Threw out the pads.  I only had to use 1 pad per day for protection against minor drips. 
 
I started Trimix 8 weeks after surgery with success.
 
I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
 
 
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 7/24/2008 10:46 AM (GMT -6)   
I am a "worrier" too :)  Congrats on your low PSA!  May they stay low forever!! 

Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/24/2008 2:55 PM (GMT -6)   
For what it's worth, all 3 of my PSA tests have come back as .04, so that seems to be the lowest the 2nd gen testing will go, OR that is the lowest it will go for me.  Either way, it's down there and I don't worry about it at all, even in the dark of the middle of the night... tongue
James C.
Co-Moderator- Prostate Cancer Forum

Age 61
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07 ED- begin 50mg Viagra and Vacurect pump nightly, Fully continent
1/14/08 Caverject started/stopped, aching. 2/24/08 .5ml Bimix started-success
7/31/08 ED- Viagra, pump continues, no response- Trimix .10ml x 2 weekly continues
Post Surgery PSA's:  3 mts-0, 6 mts.-0, 9 mts.-0.


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 7/24/2008 5:59 PM (GMT -6)   
41diagnosed
Congratulations on the great numbers. I do remember reading that if nerve saving is possible and is part of your operation a small amount of prostate tissue can be left attached along the nerve bundles as they are teased away from the prostate gland during surgery. For this reason minute amounts of PSA may be detectable by hyper sensitive (2 decimal places) and ultra sensitive (3 decimal places).
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07----4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.1 undetectable


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 7/24/2008 6:20 PM (GMT -6)   
that is exciting news! I can only imagine feeling a little discontent with the 0.4 but thrilled with the number going down. may that decrease continue....
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
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!
3/08 - 18 mo PSA <0.1
switched to Levitra - works much better than Viagra & Cialis - fewer side affects

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