Hi from a New Member - and a question

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Number13
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/31/2009 10:09 AM (GMT -6)   
Hello everyone,

I am 48 years old and recovering from a RP on 3/9/09. I was diagnosed in January from a 12 core biopsy, 1 of which was positive with gleeson score of 6. My PSA was 2.9 and was at stage T1c. I had my catheter out 3 days ago and I think I'm doing quite well, no sign of incontinence at all. The surgeon managed to save my nerve bundles and I go back to him in a couple of weeks to get the histology report. So far so good. Obviously feeling this good leads me impatiently onto the next big hurdle, i.e erections. 31 days past surgery is no time I know but from those of you who read this who have returned to 100% function, how long was it before you got things back? I would be interested to know also if any improvement is gradual and at what rate. Currently I can get about 50% which would not be of much use. Obviously post op soreness would rule any attempt at intercourse out anyway but your comments on your experiences would be most welcome.

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4848
   Posted 3/31/2009 10:17 AM (GMT -6)   

Welcome to the site and sorry you have to be here...

You'll have to wait and see how YOU do in the ED department. We're all different and have different results. I'm nine months post surgery and have zero in the way of an erection...


Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
 
06/25/08 - Da Vinci robotic laparoscopy
Catheter in for five weeks.
Dry after 3 months.
 
10/03/08 - 1st Quarter PSA -> less then .01
01/16/09 - 2nd Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 3/31/2009 10:23 AM (GMT -6)   
Hello and welcome here #13,

BTW, that is my fave number, I was born on the 13th, always lucky to me. So far, it sounds like you have done well with your surgery and recovery so far. Your post surgical pathology report is important, and let's hope it's still a low grade case of PCa. As far as ED or sexual return, you will get every possible combination and answer to that one.

For myself, I was on a catheter for 63 days after my open surgery due to complications. My doctor left the right side nerve bundle alone and removed the left.

A week after my last catheter was removed on Jan. 19th of this year, I was able to start having natural errections on my own. At first they were in the 50-60% range, but within 2 weeks they were 100% as good and long lasting as pre-surgery. My sexual life is basically back to what it was before surgery, and my sex drive while not that of an 18 year old, but normal for a 56 year old. I have never used a pump, taking injections, or sexual aid pills for ED.

I admit, and I think most would here, that my sexual recovery is not normal, but an exception. An exception that amazed even my surgeon, my wife, and myself, and I am very thankful and hope it stays that way.

There are men here experienced with every method related to ED and sexual recovery, I am sure you ask any question you want and get good first hand experienced answers. Obviously, with your surgery only 3 weeks behind you, it's a bit soon.

Hope we see more of you here, great group of people, both men and women. It's done me a world of good to be here.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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 .05, 6 month on 5/9
 
 


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 3/31/2009 10:55 AM (GMT -6)   
 
You are very early in your recovery process, but all your numbers and your recovery to date look very favourable for you. We're all different in our recovery times be it continance or ED. I'm a lot older than you and my continence recovery took me about 2 month, but ED took about a full year to recover to pre op condition using the little blue pill.
After a further 6-12 month my ED is now back to pre op without any pills.
Just remember to have patience and don't over do things to early.
All the best to you.
 
Magaboo

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA on the 26 Jan., 09, =0.05. PSA tests now every 6 month


Smokie
Regular Member


Date Joined Oct 2008
Total Posts : 46
   Posted 3/31/2009 11:08 AM (GMT -6)   

13,

As your seeing in the other posts, everyone is different. However, I think most will tell you that 50% at one month is a very, very good sign. One word of advice, if the doc does decide to put you on a recovery therapy (pills, pump, etc), do it. Don't be the idiot I was and think your superman.

Smokie


Age: 43
Diagnosed at 41 by routine blood test
PSA at diagnosis: 5.1
Pre-op Gleason: 3+4=7
Post-op Gleason: 6 (different labs?)
No luck finding local experience with DaVinci
Scheduled RP at Vanderbilt: 8/06
Insurance trouble, rescheduled at Centennial Hospital, Nashville
Prostate removed 9/06
Robotic, nerves spared, no positive margins
PSA since RP: good (less than .05)
Currently suffer ED
 
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 4/1/2009 6:47 AM (GMT -6)   

Greetings, 13.  Let me agree with Smokie - do what your doctor says.  I had surgery on Feb 4, catheter out on Feb 13 and Feb 16 managed an erection of about 80% and my wife and I were overjoyed - didn't do anthing with it but it was a great encouragement.  My doc had given me some samples of Cialis and said take them a couple of times a week.  When I got the erection so quickly I called the doc's office, talked to the nurse, and she said if you don't need them don't take them.  That was a BIG MISTAKE.  I never got more than 80% and even started to regress somewhat. 

When I went for my second 90 day PSA test, was given more samples - this time Levitra.  Took one and was back to 100% of presurgery.  There is a reason the doc wants you to take the pills after surgery whether they work or not so my suggestion is to do it. 

Now, I take the ADC equivalent of Levitra 2 times a week right before I go to bed.  If I take it in the day I do get the face flushing and stuffy nose, but when I take it at bedtime I never know I have any side effects.  I seem to be ready to go anytime with this maintenance type of approach to taking the pill.  By the way, look back at several threads regarding ADC - I have found them perfectly acceptable regarding their product and very customer friendly in dealing with them.  Don't pay the high prices in the USA. 

Best wishes - trust you will move right on down the path to complete recovery.  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


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 4/1/2009 8:36 AM (GMT -6)   
Number 13
 
I agree with everything all the others have said and would add that it is important to have the blood flow back to normal as quickly as possible. If the doctor offers a prescription, use it. I started with the VED as soon as my catheter was out. Also used Viagra and Cialis. The VED worked but I had a problem with staying hard even with two rings. So my doctor switched me to injections at 6 months which work great with the Trimix. I also went to Levitra as the Cialis wasn't doing much.
 
I have progressed to the point that I only need the minimal injection dose 0.04 mcg of Trimix to stay hard for 2 hours. My noctural erections have returned within the past two weeks. I'm at 10 months past surgery. I also get the Levitra now from ADC.
 
Good luck
Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


Number13
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 4/1/2009 9:03 AM (GMT -6)   
Thanks for your comments so far guys. One thing I didn't mention is that I have been prescribed Cialis post op which I will continue to take. I was quite fit prior to going into hospital, a ten mile run was nothing to me. I feel stronger every day and I suppose the more normal I feel, the more an issue ED will become in my mind. Still, I have to keep reminding myself that it is early days yet.

creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 4/1/2009 3:28 PM (GMT -6)   
Hi 13,

I will chip in on behalf of my husband who was the same age, similiar stats, and also had good surgical results and complete urinary continence after catheter removal. The timeframe for his ED recovery has been 2 years of slow steady recovery, starting about 8-10 months post surgery. There have been times when we have become anxious about this - then more progress is made - steady and slow as various nerve pathways heal. My husband went for less ED interventions than some other guys here, but that was also his choice. Took meds at 4 months for a while then just when he thought of it. Some disappointments along the way (hence the need for open communication). I think the most important thing is to listen to your body, enjoy your good health, keep communicating, and have faith that things will continue to improve for up to 2 years for some - and much quicker for others depending on the individual and their choices for managing it. Be positive and patient if you can, as anxiety definitely complicates things we found. It sounds like you are making a fabulous recovery. Cheers to you.
Creed_three
Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable PSA since Surgery (< 0.1) specifically,  
June 2007: 0.01; Oct 2007: 0.02; April 2008: 0.02: October 2008: 0.03: November, 2008 (repeat PSA with instructions to lab to calibrate carefully) = 0.02.
 


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 4/1/2009 4:23 PM (GMT -6)   
Number13

Welcome to the club that no one should have to join. Almost 12 weeks post-op now, the leaks are nearly gone but the stick is dead. If you are dry and at 50% erections with just meds this soon you are well on your way to full function. My surgeon advised me absolutly no attempts at sex for six weeks after surgery. My first attempt was at 7 weeks but with the Trimix injection causing that knawing aching pain, it was pretty much a wash-out. The best of luck to you in your healing process.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA 2-17-09   0.00


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 4/1/2009 7:32 PM (GMT -6)   

Sandstorm

Do you know what the mix was for the Trimix? I can understand the aching pain with the Caverject/Edex but Trimix is usually a very reduced dose of Alprostadil. I do take an Advil before I inject with Trimix but it's more of a convenience factor than anything. My script was 20:30:1 Triple Mix.

The Caverject/Edex injections would give me a 4 hour erection but 3 of those hours was in a tub with very hot water. And I would take 3 to 4 Advil.

 

 


Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 4/1/2009 8:33 PM (GMT -6)   

#13, 

Welcome to the group.  My surgery RP was on 10/6/08.  I had great results after the cath was removed.  I am still hoping for the lead in the pencil. I am taking Cialis and on the VED and not haveing mush success.  Will discuss experementing with other drugs on my April Visit to the Dr.  I am very happy with my results so far but really frustrated with the little MAN!  Good luck keep us up to speed.

 

Corvetteman3

 


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 4/1/2009 9:15 PM (GMT -6)   
best of luck on your recovery. remember, the most important thing is getting rid of the cancer. my experience has been opposite of most of the guys here. i had full erections one week after the catheter was removed but had to wait 6 weeks before my wife would try ic because of the docs instructions. my problem continues to be leakage. Its now three months since surgery and I'm back to pre-surgery fitness. I'm down to one pad a day but some leakage is still there.  i'm positive and know with patience i will prevail. you will as well.

NV RTRD 2007
Regular Member


Date Joined Jan 2009
Total Posts : 75
   Posted 4/3/2009 10:20 PM (GMT -6)   
I am 4 months post surgery and not much going on at manville. My doctor prescribed cialis when I went for three months post PSA but haven't got the chance to use it because the VA don't carry them. So, I went and got another prescription for levitra of which it arrived from the mail this week. The thing is my Primary Care Physician at the VA lowered the dose to 5 and only 4 tablets per month. (actually they gave me 2 in 10 so I have to cut them in half). So this is going to be one tablet per week. I'll start my first pill tomorrow. I am not expecting a sudden rise to be useful right away, but just hoping that will jump start the blood flow and eventually go back to pre surgery condition.
Age 54; Age DX 53
PSA: May 07- 2.9; Dec 07-4.3; Jan 2008- 6.1; May 2008- 6.4; Sep 2008- 7.3 ; Sep 2008- 9.6
Bone Scan: Mar 2007- Normal without evidence of metastatic disease.
Biopsy Mar 2008: 6/6 core right gland- No evidence of malignancy; 5/6 core left gland- positive Gleason score 3+3=6 average tumor volume 5 mm.Clinical Stage II.
Transrectal ultrasound at UCSF Jun 2008: 7x14x10 mm hypoechoic lesion in left gland. DRE positive, PSA Density- 0.23 and Prostate volume - 27 CC.
RRP: 4 Dec 2008; Discharged - 8 Dec 2008; Cath removed- 18 Dec 08.
Pathology Report: Prostate- 33 grams; L/R pelvic lymph node -No evidence of malignancy; Right Lobe- No definite tumor; Adenocarcinoma, Gleason 3+4.
Post PSA: 7 Jan 2009 - <.05.
              10 Mar 2009 -<.05


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/5/2009 9:31 AM (GMT -6)   
Welcome to Healing well Number 13. Healing is an interesting and mysterious part of the human body. From a spiritual standpoint I think God knows what we need when we need it. So take your time and reflect on the new focus cancer has created in your life. I hope you stop and smell the roses more often, love more, care more and share more. In due time your ability for a complete erection will come back and when it does you will be able to offer and share of yourself in ways that prior to cancer you would not have been able to do. You are a young man Number 13 and you have much much quality life ahead. Take it easy take it slow and enjoy the new chapter in your life. Stay in touch my friend and know we care very much about you.

peace and love
dale
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
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
Testosterone keeps rising, the current number is 156, up from 57 in May
T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Number13
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 4/5/2009 12:51 PM (GMT -6)   
Kind words, thank you very much.
48 Years
Diagnosed 28 Jan 2009
12 Core Biopsy, 1 Positive
Gleeson 6
PSA 2.9
Prostate Stage T1c
RP on 9 March 2009
2 Nerve Bundles Spared
Catheter out 28 Feb 2009 - Dry from day 1
Prescribed 20mg Cialis twice per week.
ED - we are working on it.
Post op Biopsy results due 9 April 2009


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 4/5/2009 6:47 PM (GMT -6)   
hb2006,

The Trimix I was prescribed is as follows:

Papaverine Hydrochloride USP 0.3 GM / Alprostadil 5,000 MCG/ML - Stock Solution 0.005 ML

My next urology appointment is on the 21st. I have kept a detailed log for each injection and I plan to use it to change this medication. The hours of pain after an injection is wearing me down but I will continue to do my duty.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA 2-17-09   0.00


Number13
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 7/7/2009 7:07 AM (GMT -6)   
I thought I would return to give an update and let you know how things are now that 4 months have passed since my surgery.

All seems good. My first post op PSA test showed a zero and with the aid of cialis the situation has returned to normal in the erection department. Things are feeling more natural every day.

I had to think a little before returning with what looks like to be a happy ending story. I know many post on here with slow or no progress to report. I hope my experience can show to others that you can come out of the other side of this with everything pretty much intact. I know prostate cancer and its effect is something I will have to live with for the rest of my life and of course the monitoring will continue with good reason.

For now it's good to take a breath and be happy with the here and now and be thankful for the progress I have made. Kind regards to all.
48 Years
Diagnosed 28 Jan 2009
12 Core Biopsy, 1 Positive
Gleeson 6 (3+3)
PSA 2.9
Prostate Stage T1c
RP on 9 March 2009
2 Nerve Bundles Spared
Catheter out 28 Feb 2009 - Dry from day 1
Prescribed 20mg Cialis twice per week.
ED - we are working on it.
Post op Biopsy results 9 April 2009 - Good News, they got it all.
1st Post op PSA test due end April 2009 - Good News, Zero
ED - We have lift off.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 7/7/2009 9:56 AM (GMT -6)   
13,

That sounds like a real good update for being 4 months out. Keep up the good work and please report your progress. Best to you.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 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 .05, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 7/7/2009 3:17 PM (GMT -6)   
Greetings, 13.  Congratulations on the zero.  Welcome to the club.  We trust this will be the first of many, many zero's in your life.  Also congratulations on the ED solution - glad things are working well.  David
Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 7/7/2009 8:32 PM (GMT -6)   

13,

Thanks for the update. It is encouraging.

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 7/7/2009 11:39 PM (GMT -6)   
Thanks for the update. Sounds Awesome!!!! Congrats.
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 ED- 5 mg Cialis daily, pump daily,

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