Hello, I’m new here so bare with me.

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zingaa
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 4/13/2008 7:15 AM (GMT -6)   

Let me start with me, I just turned 40 years old, white male and live in California.

 

Went for a physical January 15th and the doctor felt something”weird” and wanted to have a Urologist check me. Went to Urologist February 1st, he checked and also said he felt something, I had a biopsy the next week February 8th. My results from my blood work were as follows, my psa was 5.81 and my Gleeson 3+4=7, which gave more reason to do a biopsy.

 

I got my results the next week February 15th and they were positive samples on the right side, oh great. Met the next week February 18th for a consultation with Urologist on what next. We decided to have it removed, that would be the best option.

 

I had my surgery on April 1st (no joke), left the hospital the next day April 2nd. Went back on April 9th to have my Catherder taken out, oh what a joy that was. Any male that says that doesn’t hurt is full of it.

 

Over this whole process everyone I’ve came in contact with from my Urologist, Surgeon, and nursing staff all said I’m the youngest person they’ve ever seen. In fact, they looked at me in shock. I have no Family history, I eat healthy, exercise everyday, and am not by any means over weight. My Urologist said I was “struck by lightning”, oh boy lucky me.

 

So to break this down, this all went down in less than four months at 40 years old. Everyone I have talked to that’s had a similar situation says’ “what Doctors do you have, I’ve never seen anyone act so quick it took me months to have my surgery, you’re lucky”.

 

One of my big questions now is leakage. On average, how long does it take? I know everyone is different, but I’ve heard a few months or up to a year. I know it’s only been 5 days since my Catherder was taken out, but it’s already getting old. I’m doing my Kegel exercises daily, but I’m getting frustrated already. Patience is not my strong point.

 

With all this sitting around at least my Playstation skills have improved. cool  

 

Thanks for your time, consideration and positive input.

 

D

Post Edited (zingaa) : 4/13/2008 7:48:46 AM (GMT-6)


TonyB
Regular Member


Date Joined Mar 2007
Total Posts : 37
   Posted 4/13/2008 8:42 AM (GMT -6)   
Hello zingaa,
Yes, I agree, 40 years old with no family history is a bit unusual in my opinion. However, I'm very surprised that you were diagnosed a G7 from a mere blood test. That confuses me but I've been told that I'm easily confused. Regarding "leakage", my urologist told me that, while there are those who claim an unexplained miracle and are dry immediately after surgery, some patients don't recover from incontinence for 18 months. You must remember that nothing you read on this forum is proven truth. The posts here can be misleading at times. Maybe wishful thinking? Tends to discourage those of us who are having a more normal recovery. In my experience, I have found that an aggressive kegel exercise routine did not help me. I found that I was much better in the early weeks and months post-op if I moderated my kegel exercise routine. I found that as my muscles down below got tired, I leaked more. So, after about 2 months I stopped doing kegels regularly and only remembered to practice doing them during the urination process. Stopping and starting the flow at will. At this point in time, in my view, if I were you I'd be more concerned about healing from the surgery. My home nurse visited 2 times per week for a month and she told me that in the first 30 days after my surgery I should try to force drinking fluids and try to urinate as much as possible. She told me that after having a recent prostate surgery, frequent urination helps ward off infection by keeping the urethra flushed out regularly. She told me, above all, not to dwell so much on ED or incontinence issues until after 30 days post-op. That's merely my experience and my non-professional opinion. I'm sure others will share their experience with you and probably tell me I'm all wet. Best wishes! :-)
SYMPTOMS: PSA Velocity=2.6 to 4.7 over 12 month period; DRE=Normal

PRE-OP STAGING: Biopsy=1 in 12 cores positive; Gleason 3+4=7; T1c; Bone scan=clear; CT scan=clear; da Vinci robotic LRP Jan2007 (@ age 58)

POST-OP PATHOLOGY: Adenocarcinoma; Gleason 3+3=6; T2c; Extra Prostatic Extension=Clear; Seminal Vesicles=Clear; Margins=Clear; Post-op PSA's (to date)=undetectable

Post Edited (TonyB) : 4/13/2008 9:43:41 AM (GMT-6)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 4/13/2008 8:43 AM (GMT -6)   
Hey Zingaa,

Sorry you have to be here but welcome to the forum. And congrats on having the surgery behind you. You are now on the "other side" and on your way to recovery.

If you look on http://www.yananow.net/Chart-Age.htm you will find several men in their 30s and 40s who had prostate cancer.

Good luck and please stay with us...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 
 


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 4/13/2008 9:05 AM (GMT -6)   
Recovery of urinary control is something I was blessed with, only used one pad after catheter removal, but I walked 3 to 4 miles per day for the last few years and did Kegels a couple of months prior to RRP, I think these things were very helpful. Time will improve things, I am still battling ED, getting better week by week. Look and learn here, it is a great site, the best I have found. Patience in a forced necessity for me also, hang in there.

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
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement, more notable over last month
with Viagra 100 mg.


zingaa
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 4/13/2008 9:14 AM (GMT -6)   
Thank You, also, my post op nodes were negative.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/13/2008 9:54 AM (GMT -6)   

  tongue    Hi ~ D *zingaa and Loved Ones,

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

Knowledge gives us POWER….  POWER takes away the fear.

 

~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~

 

 Click  on  link  below for important information that will help you ~ help us!!

 

  >>  Welcome New Members ~ to HealingWell

 

The information (link) listed above is to help you get around the forum! 

 

v       This is a journey best traveled with friends. 

Welcome ~ New Friend from all the members here... on HealingWell.com

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg

 

v      TC-LasVegas ~  Moderator for Prostate Cancer Forum

 

v      bluebird ~  Moderator for Prostate Cancer Forum

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

 

 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/13/2008 10:49 AM (GMT -6)   
tongue    Hey ~ D,

 

Reading your journey above brings our journey real close to the surface…  Your dates are 2 years later than ours but the same path.  Physical in January (DRE like you doctor felt something, Biopsy in February, Surgery RRP in April 3rd, 2006.  We knew immediately upon diagnosis the treatment plan for us.  Each decision is a personal choice but it sure is nice to see so many options and so many people willing to share their journey and experiences for each of us to pull from.

 

Thank you so much for joining us and for presenting a wonderful “picture” of your journey.  I personally feel it’s important to see a complete circle and your posting did this for me.

 

As you continue to read ~ you’ll find many variables when it comes to working toward urinary continence.  Buddy & I invite you to visit our personal thread listed in our signature below.  Near the end there’s information on the routine we used for Kegels…  and there’s lots of threads listed in the Welcome Letter direct links to give you even more information.

 

Here’s a little more helpful information to pull from….

 

**Excerpts taken from a wonderful book called “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer” by: Patrick C. Walsh, M.D. and Janet Farrar Worthington. 

Copyright 2001….. 

 

**Urinary continence: The return of urinary control:

 

**Phase One is when you can remain dry when lying down.

 

**Phase Two is when you’re dry when you’re walking around.

 

**If you can walk to the bathroom and not urinate until you get there, that’s a GREAT SIGN!!!… it means that the sphincter is intact.

 

**Phase Three, you are dry when you stand up (using muscles that put pressure on the sphincter) after sitting.

 

**Remember, the recovery of urinary control is a slow process.

 

The most important thing you can do during this time

is not to get discouraged.

 

 

**Excerpts from Dr. Walsh’s book:

It’s hard to believe, but urinary control does continue to improve over two years and, in an occasional patient, even longer than that.

 

Can you do anything to speed things along, and improve your urinary control?  First, whatever you do, do not wear an incontinence device with an attached bag, a condom catheter, or clamp!  If you use any artificial device, you will hurt yourself in the long run.  You won’t be able to recover your urinary control, because you won’t develop the muscle control you need.

 

<end quote>

 

As time permits… follow the link on how to establish a personal “Signature”… it helps us and Newbies to know where you are on your journey!! 

 

Keeping you close as you continue to travel this path with a positive attitude and new friends to help along the way.

In Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

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

4th PSA 2-13-2008 (23 months) Less than 0.1 Non-Detectable :)


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/13/2008 11:48 AM (GMT -6)   

    Hey D,  Ya got me beat!   I was 43 at Dx and surgery.  I hope you beat me again in recovering your continance.  If you look back on "My Journey" you will see I have had little luck.  I do not say these things to scare you.  But to let you know that cancer free is the most important thing.  I will say it is no fun dealing with the level of incontinance I have (6+ pads a day).  But you can manage.  I have gone on a work related trip for a week, Went to the 2007 PGA in Tulsa, and we will soon go on an Alaskan Cruise all while dealing with this unfortunate side effect of my surgery.

    On little word of advice I would give is try to find a Physical Therapist that uses bio-feedback for pelvic floor training.  It will help you isolate those pelvic floor muscles. 

    Good Luck,  KW

 


    43
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for surgical fix for incontinance.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.  Will probably try Collagen injections one more time around the first of May.  If no improvement after that will start looking for a AUS Doctor.
 
     


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 4/13/2008 1:16 PM (GMT -6)   
D-
Welcome. I was 47, my friend was 44, and a guy I know is 36! There are lots of plusses to dealing with this early. I know, "little miss sunshine" I am not, but really, there are a few...
I was spot on average. I was dry at 9 weeks. 4-12 weeks is most common range.
I was also able to get a usable erection at 8 weeks with 100mg viagra. I can tell it is still getting better even now at 13 weeks. The day is not too far off when i will need nothing but some good stimulation!
The younger you are, the better the recovery, in general.
While there are fewer suggested options for us younger guys (seeds, radiation, watchful waiting) we are lucky that it is out, and done with and not dealing with this for years to come. My 44 yr old friend says after 18 months that he doesn't even think about, it has, in the long run, hardly affected his life at all physically.
Also, in forty years, when fellow octogenarians, are standing at the urinal for ages waiting for a dribble, we'll still be peeing like a race horse. When they can't pee at all and are wearing a bag, we can say, 'been there, done that'. So, when you are 80, you will be still playing 18 holes of golf and able to make it the whole course without having to disappear into the bushes every few holes!
How's that for putting a spin on things!
Welcome to the club. Patience is key. You will be fine. There will be bumps in the road, there always are, but you will overcome them. Keep the little guy happy with a lot of attention, do those kegels ( i was terrible at them) and take your viagra every night (www.alldaychemist.com). and you will be fine. It is probably the size of a cocktail sausage right now. Don't worry. With exercise and attention, it will come back!
Paul
47 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 six weeks
Pad free on March 14 - (10 weeks.)
ED - Take 100mg viagra every night.
Totally usable erections at 10 weeks.
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/13/2008 3:40 PM (GMT -6)   
I will admit 40 is young. One thing I have been told the younger you are the more aggressive the cancer, luckily for you it also sounds like it was caught early that it had not escaped the prostate. Since you are young you will bounce back quick. Try to stay busy with positive activities, and hopefully one day soon this will be nothing but a memory.Please keep us posted.
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids


zingaa
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 4/13/2008 4:20 PM (GMT -6)   
Thank you sooo much, I like the sound of dry at 9 weeks.
Don
Age 40
PSA 5.81 (2-1-2008) 
Biopsy Gleason 3+4=7
Surgery (4-1-2008)
Post op tests negative
10% of tissue cross sections
 


Roger G
Regular Member


Date Joined Apr 2008
Total Posts : 150
   Posted 4/14/2008 1:38 PM (GMT -6)   
Welcome to the club. While the continence was really quick to come back, the errections have not been.

I sure am glad I fathered my early.


Age: 43 (2008)
DRE Small Ridge on prostate, PSA 1.5
07/2007: Diagnosed cancer, T2c, Gleason 3+4=7
09/2007: Laparoscopic prostectomy @ Hamilton General, 4 hrs.
              Both nerve bundles spared
              Pathology Report: Tumor confined w/in prostate
              T2c, Gleason is 3+3=6
              Went home with JP drain
10/2007: Made return trip to hospital.  All urine was comming out JP drain.
10/2007: Catheter removed. Next to no leakage
11/2007: 1st PSA <.003 :)
              ED: Started Viagra, no response yet.
12/2007: Had confidence to go padless!!!!!
12/2007: ED:  Stopped Viagra as it's causing hemroid problems.
01/2007: 2nd PSA <.003 :)
              ED: next to no response.
 


beachbum50
Regular Member


Date Joined Sep 2007
Total Posts : 292
   Posted 4/15/2008 5:43 PM (GMT -6)   

Each of us has a little different story. I was lucky to be dry from the day they pulled the cath out, but it took exactly six months and five days until I awoke with that old "woody", this past Monday, two days after my 53ed birthday tongue  ! Welcome to the other side, sorry you had to join us at such a young age, but at least it was found early, and now you can look forward to a long, healthy life. Good luck

 

Beachbum


Beachbum
 
PSA 10 June 2007
Biopsy July 2, 16 of 16 samples positive
T2C
3+3=6
prostate weighed 40 grams
Di Venci 10/09/07, four hours on table, 3 in recovery
Total time in Hospital: 29 hours
Record for Dr. Lance, 65% of prostate had cancer, but NO spread, clean margins
Clean nodes,
First PSA at 5 weeks, UNDETECTABLE!
Catheter out at seven days, dry from hour one!
Second PSA 19 weeks post op, UNDETECTABLE 2/11/2008
The Lord has truly Blessed me.


zingaa
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 4/15/2008 7:03 PM (GMT -6)   
Thanks again
Don
Age 40
PSA 5.81 (2-1-2008) 
Biopsy Gleason 3+4=7
Surgery (4-1-2008)
Post op tests negative
10% of tissue cross sections
 


BamaCoast
Regular Member


Date Joined Apr 2008
Total Posts : 39
   Posted Today 6:12 PM (GMT -6)   
Hello, I am new here. I have been reading for a few weeks and decided to get involved. I had robotic surgery on April 5th at St Vincents Hospital in Birmingham, AL. My surgeon/urologist has done around 1000 of the robotic procedures and that is the reason I drove 4 1/2 hours to have the surgery. My gleason score was 3+4=7. The cancer isolated to the prostate and I will not need any further treatment except for bladder control and ed. Thought I would give a little background before responding to this post. I am 51 years old and it has been about 6 1/2 weeks since surgery. I feel really good and have recovered well.

I started out using 6-8 pads per day and this went on for about three weeks. Then it seem like overnight I went down to 4-5. this went on for about a week or so and overnight I went down to 2-3 where I am currently at right now. I can get by with two if I am not moving a lot and can get to the restroom at anytime. If I am active like working in the yard or fshing ect I will use 3 per day and from what I have read and after talking to my urologist I am about normal. I hope to be down to 1-2 in the next week or two and by 3 months be pad free. I have a problem with the pads. I just don't like it and I will celebrate big time when I am pad free. I seems like when it gets better it happens quick.

thanks to everyone for sharing your experience and sharing your knowledge.

zingaa
New Member


Date Joined Apr 2008
Total Posts : 13
   Posted 4/23/2008 7:13 AM (GMT -6)   
Progress:
Had to go back because one of my sootchers(sp?) was leaking a little bit, no big deal, he put a wick in and it seems to be getting better.
 
Leakage, not so good, it's about the same. At night it's ok, but anytime I'm sitting and then stand or walking a lot, it leaks like a siv. I'm probably about 15-20 pads a day. I've been having a few brews during Stanley Cup playoffs, so I'm sure that doesn't help.
 
It's only been two weeks since cath came out, I can't expect miracles yet.
 
ED:
about 70% with Lavitra, leakage during that as well. Shower time.
 
Hope all is well, Thanks
Don
Age 40
PSA 5.81 (2-1-2008) 
Biopsy Gleason 3+4=7
Surgery (4-1-2008)
Post op tests negative
10% of tissue cross sections
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/23/2008 9:24 PM (GMT -6)   

    Zinga,  You may want to lay off all alcohol and caffeene.  I know it will be hard. I have been used to my morning coffee and Iced Tea in the evening.  Going Decaf on both will help.  I would go with the no caffeene soda's such as sprite or 7-up.  I know it is a pain....but your still early.  Hang in there.

    KW

 


    43
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 4th, 2008 - Appointment with Original Dr. to discuss options and recomendation for surgical fix for incontinance.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.  Will probably try Collagen injections one more time around the first of May.  If no improvement after that will start looking for a AUS Doctor.
    April 18, 2008 - Collagen injection.
 
     

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