Another DaVinci Experience

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jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 12/22/2007 9:25 AM (GMT -7)   
Hello all, I found this forum a few days ago. I really appreciate all the sharing of experiences, it has been very informative and reassuring to me. Since I've found it so helpful to read of others' experiences, I'd like to share mine as well.
 
Due to strong family history, I started getting my PSA tested in my late forties. It sat in the mid 2's for several years, then shot up to 4.7 in August. Retested, same result. Considering family history and the jump, my urologist recommended a biopsy. The result was being diagnosed with PC in September, at age 54... one side only, Gleason 6 (3+3).
 
I gave a lot of thought to treatment options, mostly looking at surgery and radiation seeding... ended up choosing DaVinci surgery.
 
My DaVinci surgery was 11/8/07 at the University of Minnesota Fairview hospital, and it went well except for some issue with breathing tubes... I had a bad sore throat for a while, in addition to the usual recovery needs. My doctors and other staff were wonderful, making an experience nobody wants as positive as they could. The surgeons said they thought the nerve sparing and reconstruction had gone well enough to give me good prospects for recovery of continence and potency. They were making no promises though, which is probably appropriate.
 
My catheter was removed 11/21 (whew) and I got my pathology report that day as well... margins looked good, no signs of spreading to lymph nodes (bigger whew).
 
I returned to work (desk job) half time the week of 12/3, went back up to full time the following week.
 
It appears I'm doing all right continence wise... 6 weeks after the surgery I'm using a few pads, but it's mostly precautionary against leaks/dribbles. At home on the weekend I'm transitioning to going without pads, but I don't have the confidence to leave the house without them yet.
 
I've had less progress on the ED side of things, and my concerns over that issue were the primary reason I was searching the net and discovered this forum. After reading many others' experiences, I can see that it's way too early to be obsessing about it! Hopefully the minor stirrings will increase with time, as the nerves recover from their trauma.
 
My first PSA check is scheduled for February, hopefully I'll get that undetectable result! My Dad had an open RP in 2001, has been undetectable since.
 
Happy holidays!
 
John
 
 

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/22/2007 9:56 AM (GMT -7)   
Hi John and welcome to HealingWell.
You have been wise and on the ball of awareness. That is something we always strive to get the guys to do. Many of us did not get their too early. So for me its awareness that I spread and hopefully never again cancer. But with you I'd be preaching to the choir. Have a safe and peaceful holidays and I wish you luck on the February doctors visit.

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.
 
Visit my journey at:
 
STAY POSITIVE!


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 12/22/2007 11:52 AM (GMT -7)   
TC-LasVegas said...
Hi John and welcome to HealingWell.
You have been wise and on the ball of awareness. That is something we always strive to get the guys to do. Many of us did not get their too early. So for me its awareness that I spread and hopefully never again cancer. But with you I'd be preaching to the choir. Have a safe and peaceful holidays and I wish you luck on the February doctors visit.

Tony

Thanks, Tony. I wish I could take all the credit for that wisdom, but I've been blessed by great advice from family, doctors, and friends. My Dad asked me and my brothers to promise to start PSA testing when he had his surgery, even though none of us had reached 50 yet. So now I join those spreading the awareness. I have been shocked to find that some of my coworkers and friends have never been tested, even though some of them are older than I am. Hopefully I've inspired some of them to consider testing.
 
John

marang keru
Regular Member


Date Joined Dec 2007
Total Posts : 21
   Posted 12/22/2007 5:12 PM (GMT -7)   

John,

Welcome to the board and thanks for your post.  I too had Davinci surgery performed (December 3). See my post below.  After the follow-up on December 10th I was given a 30-day prescription 50mg for Viagra - with the specific advice that it was for recooperative purposes since it would facilitate circulation.  Well, it did more than that, on December 11th, Day 2 post-cathether removal, I achieved and errection and had intercourse.  I am not saying that to brag but to provide encouragement to you.  Were you prescribed and ED-type meds?  If not, and if your doc agrees, it might do the trick.

 

 


Age - 57
PSA - July7, 2007 - 4.87
Confirming biopsy - August 30, 2007
Gleason scores of 6 (3+3) and 7 (3+4)
DaVinci surgery December 3, 2007 - Robert Wood Johnston Hospital, New Jersey
 
Cathether removed December 10, 2007
No incontinence after Day 2, December 5, 2007
Fully functioning sexual activity Day 2, December 5, 2007
 
Post-op pathology report confirmed Gleason of 7 (3+4), 30% involved by tumor, no positive margins.
 
Follow-up blood work scheduled for March, 2008
 
 


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 12/23/2007 11:59 AM (GMT -7)   
marang keru said...

 Were you prescribed and ED-type meds?  If not, and if your doc agrees, it might do the trick.

I have not been prescribed any as yet, and probably need to look into that. My doctor referred me to another specialist for ED issues. Due to the busy season and inconvenience of the location of the "Sexual Health" specialist, I haven't set up an appointment yet. I guess I was hoping I wouldn't need to, and that's probably deluding myself. I appreciate your encouragement, perhaps that would work for me as well.
 
John
 
Edit: I checked, and my doctor advised contacting the specialist after a couple of months, which would be in a week or two. It's interesting to see how much variation there is in how early they advise you to pursue drug/other solutions.

Post Edited (jrponalameda) : 12/23/2007 2:15:58 PM (GMT-7)


bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 12/30/2007 11:19 AM (GMT -7)   

tongue  Hi ~ John & Loved Ones,

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

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

 

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

 

yeah  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! 

     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      bluebird ~  Moderator for Prostate Cancer Forum

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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 12/30/2007 11:27 AM (GMT -7)   

  tongue Dear John,

 

Thank you for reaching out to all of us and sharing “Your Journey”

It’s the best gift you can give to us!!!  And updating this thread when you get your PSA in February is very important to help keep your journey together for all of us to follow your recovery and for future readers.

 

We reach back with warm thoughts and gentle hugs…

Keeping you and your loved ones close in prayer.

Stay close.. http://i206.photobucket.com/albums/bb179/mamabluebird1955/BluebirdStayClose.jpg

 

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

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 1/2/2008 6:54 AM (GMT -7)   

Thanks, Bluebird... I will update when I get my results in Feb...

John


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 2/22/2008 10:54 AM (GMT -7)   

Just got back from the doctor, and my first post-op PSA came back undetectable. :-)

Between this result and my good pathology, he was willing to estimate a 95% chance that the PSA would never rise again. That's about the way I was looking at it, but it was interesting that he was willing to give a number.

I'm doing well with respect to continence, I've been pad free for several weeks now although there are some activities for which I might still wear one as precaution. The urgency of reaching a restroom is still sometimes higher than it used to be, but continues to improve. Stress incontinence is a concern, but I've pretty much learned to control it unless I'm off guard.

ED progress is a little slower but also good, reasonable results at times even without drugs.

I continue to find this site to be a wonderful resource! Thanks to all for the great information and support!

John 


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 2/22/2008 11:06 AM (GMT -7)   
Patience is the key, my DaVinci was 9/5/2007. My incontinence was not an issue, used only one pad, for which I am grateful. The urgency has definitely shown improvement esp after the 3rd month, as the inflammation resides and bladder resumes its pre-op volume and musculature. The ED has been slower, but now into my 5th month, I have experienced definite improvement with Viagra 100mg, with erections returning to their pre-op volume, but am unable to maintain for use, I suppose I still have some venous leakage?? Hang in there, it is a journey, with notable milestones along the way. This site is wonderful and has been most encouraging.

Randy

JCL
Regular Member


Date Joined Jul 2007
Total Posts : 242
   Posted 2/22/2008 1:01 PM (GMT -7)   

Welcome, John. My father had prostate cancer too, and had his removed in 1997. As soon as he was diagnosed I immediately got tested and had been doing so every year until I was diagnosed last year. I credit him with saving my life.

Congratulations on your pathology report and good luck with your recovery. And here's to 0 PSAs for the rest of your life.
 
Jack
Diagnosed: March 25, 2007. Age 49
Biopsy: Gleason 6. Five of twelve samples positive with <5% each. No perineural invasion seen.
Surgery: May 21, 2007
Post-op Pathology: Upgraded to Gleason 7 (3+4), negative margins, negative capsular penetration, negative seminal vesicles, lymph nodes left intact, multifocal perinural invasion, 15% of prosate involving cancer in both lobes. T2c
Continence: Out of pads at five weeks. Seven months post-op I'm fully continent.
Erections: Yes! With the assistance of Cialis.
Post Surgery PSA: Three tests, all <0.1
Family history: Great-great grandfather died from PC. My Father had his prostate removed at age 67 in 1997 and has had an undetectable PSA ever since. I was diagnosed at a much earlier age and had a more agressive cancer than my father. Go figure.


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 2/22/2008 1:51 PM (GMT -7)   
John

Great news on both the pathology report and your first post PSA test being undetectable that's the most important part. For me it took about 5 or 6 months to start to feel like I had the incontinence issues under control most of the time and even today I can have a day where it feels like I have a small leak, things heal for a long time. Good luck in the future and may you have all 0's from now on.

Norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
Catheter removed 1-18-07 suffered bladder spasms Catheter reattached 1-18-07 Catheter removed 2nd time 1-24-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3-Next action awaits me.
Next PSA Scheduled and meeting with Radiologist set for 3-27-08
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


mayzee
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted Today 4:55 PM (GMT -7)   
Hi,
I was 64 when I had surgery.
Had DeVinci surgery 10/07 at City of Hope, CA. Prior to surgery was taking Cialis. After surgery was advised to take Viagara everyday for next 12 months. I found that Cialis worked best for me. After surgery when I used Cialis I got about a 40% erection. My ED doctor put me on Trimix Injections and Cialis. Started 2 months after surgery. I inject Trimix(PGE1 8.33mcg/ml, PHENTOLAMINE 0.833mg/ml, PAPVERINE 22.5mg/ml)  2 to 3 times a week. After injection I wait 24 hrs. before taking 20 mg of Cialis then must wait at least 48 hrs. before injection. I use a BD Ultra Fine 1 cc. 30 guage neddle. I started at .05ml and increased .05 mls until I reach the right dose for me which is .20  The injections are painless and work. Get erection in 5 min. last for about 1 hour. Can not get full erection on Cialis yet. Dr. told me when you inject you must get blood to flow back into the syringe before you inject. I found that when I did not get back flow of blood I would not get full erections. Sometimes to get blood flow I had to back needle out just a tiny bit to get blood flow. Must be in the right spot or nothing happens. I almost did not go for the first injection at Dr. office. I have fear of needles. However, once you are shown how to do it right you find that it is not bad at all. I still cannot beleive that there is no pain. I have only been doing this for one month but I am very pleased with the results. You do not have to have sex everytime you inject. The purpose is to get the smooth muscles to react like they did before surgery. Dr. says I may be able to get by with just Cialis in about a year. It can take that long to get the muscles working again. Trimix must be refrigerated but you can buy a little case that holds a cold pack and the Trimix for traveling. I was told that Trimix can be left unrefrigerated for 24 hours if the temp is not above 80 deg. I find that to make it less of an interuptions you can have proper dose in the syringe in your bath room overnight if you put it next to the cool pack wrapped in a wash cloth or in the small storage bag that holds cool pack ,syringes and the Trimix that you can buy from the drug store.
mayzee

uncledan
Regular Member


Date Joined Aug 2007
Total Posts : 120
   Posted 2/25/2008 5:09 PM (GMT -7)   
Reading your posts prompts me to tell about the time I took my prescription to the pharmacy. I gave the Druggist the prescription and in a few minutes he returned with it filled. That'll be $58.20 he said. My thoughts not too bad for thirty. So when I got home I opened the bottle to inspect and Surprise (THREE) pills for $58.20 So I went back by the next day and talked to the Druggist to confirm that three was the correct amount, his reply yes, but you can get as many as you want. My reply was I already had more than I wanted at that price. My next adventure was to get back on the forum here and research for subs.. Found them, 120 doses for $94 including shipping. Uncle Dan
Age 68
DRE negative, 10 - 06 PSA 5.44, 01 - 07 PSA 6.47
5 - 07 CT and Bone scans negative, 05 - 07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08 - 14 Da Vinci RAP, five hours surgery
Some right nerve and all left nerve removed,
8 -16 Negative margins, Encapsulated, 50% left side
Lymph nodes 2 R & 1 L - Negative, R & L seminal vesicles - Negative
Gleason changed (4+3) 7 so it was closer to 8 than 6
Sixth month PSA 0.04 Previous PSA 0.00 Occasional stress drip
Results are improving while using pump. Pills no help


mayzee
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/25/2008 7:51 PM (GMT -7)   
I found that the Trimix injections work. You should check with Dr. and give it a try. I found the injections to be painless.
mayzee

jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 2/26/2008 6:44 AM (GMT -7)   
I appreciate the feedback and support. Normally I don't have a big problem with needles, but I have to confess considerable trepidation toward those injections. For now I'm trying the drugs... although the results haven't been great, I'm making slow progress even without them.
I think I'm doing all right considering how recent my surgery was, as mentioned above, patience is the key...
Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)
DaVinci Surgery 11/8/07 University of Minnesota
2/22/08 PSA Undetectable


mayzee
New Member


Date Joined Feb 2008
Total Posts : 3
   Posted 2/26/2008 10:23 AM (GMT -7)   

I had my De Vinci surgery in Oct. 07 and the only thing that worked is the injections. I am told by my Dr.s that you have to get the blood moving into the Penis as soon as possible or you may loose your ability to get good erection. They all say use it or loose it. I started on the injections two months after the sugery. The Cialis or Viagara, which every works best for you, is being used  in conjuction with the shots to keep blood flow and relax the smooth tissues working. My Dr. told me to try the shots and if I did not like them to go back just to the pills and pump. I am so happy that I tried it. It took me back to the way it use to be before all of my hpertension medication and the prostate surgery. It is unbelieveable what it has done for me. My dr. told me to make sure to get a little bit of blood flow back into the syringe before injecting the Trimix. At first when I did not get the back flow and went ahead and injected I had not result. I found that he was right. I have read that it is not important to get this but my Dr. and my first had experience indicates you must get some back flow of blood to get the proper response. I only say this because I became frustrated when the first few shots I did not get the back flow and hence no response. It takes a little practice to get good at it, but don't give up. Dr. told me that if you don't automatically get a very tiny back flow of blood into the syringe. to just draw back the injector handle of the syringe and also withdraw the needle just a very little bit to get it in the right spot. 95% of time I do not have to do this. Once again, it was a major step for me to do the shots but now it is a non issue. I can not even imagine living the way I did prior to the shots.

Hope this is of help.

 

jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 8/20/2008 6:28 AM (GMT -7)   

I'm dredging up my original thread just to keep the story of my journey together... my surgery was 11/8/07.

I got the results of my latest PSA yesterday, still undetectable :-)

I've been fortunate in the continence department. I still have to be careful of stress incontinence on occasion but I haven't needed pads since the Feb/March timeframe.

ED has taken longer, but continues to improve slowly with the help of Cialis and a pump for therapy.

Thanks to all for continuing to make this such a caring and supportive community!

John


Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)
DaVinci Surgery 11/8/07 University of Minnesota
2/22/08 PSA Undetectable

Post Edited (jrponalameda) : 8/20/2008 7:35:09 AM (GMT-6)


norskie
Regular Member


Date Joined Jan 2007
Total Posts : 376
   Posted 8/20/2008 7:46 AM (GMT -7)   
John

This sounds great and that your doing well, may you keep those 0's coming with all future tests as well.

Norskie
norskie
Current age 50, Age at Dx-48 PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Surgery Pathology report 4+3=7 a couple agressive Grade 5 cells found
Da Vinci surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
1st & 2nd Post PSA Blood Test .1 and less - Undetectable
3nd Post PSA Blood Test 01-17-07 .3
March 27th PSA .422 Begin Salvage Radiation April, 14 2008
Radiation Complete June 4, 2008 36 treatments
August 5, 2008 PSA .09 or < .1 again
Incontenence-Pad free since end of May 07 4 1/2 months post surgery 
ED back to 95% prior to surgery - no medication required.


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 5/18/2009 7:03 AM (GMT -7)   

Bumping my old thread with new info... latest PSA is undetectable once again, good news :-)

My doctor said he felt we could reduce the checkup frequency to yearly at this point.

Overall I'd continue to classify my surgery as very successful. Continence returned fairly quickly, and while the ED took longer I'd say I'm back at 90-95% and no longer need meds.

I know I don't post real often, but I still check in regularly... this forum has been an important resource for me, and I've recommended it to others with the misfortune of joining the PC 'club'.


Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)
DaVinci Surgery 11/8/07 University of Minnesota
2/22/08, 8/15/08, 5/15/09 PSA Undetectable


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 5/18/2009 7:59 AM (GMT -7)   
Very nice, John,
I've been out a few days but to come back and see some great success stories is very cool. Great job. Stay well...

Tony


 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


KeyWestPirate
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 5/18/2009 4:37 PM (GMT -7)   

The differences between surgeons re; the emphasis on ED recovery from the beginning is interesting.  Now I'm beginning to wonder if it's just something they give us to do to keep our mind off the PC and off the phone to their office? 

Or, is it the key to a great outcome?

My surgeon went over the whole ED thing a week prior to the surgery.  "Start taking Cialis daily immediately after the surgery, buy a pump and use it 3 x a week".  He really didn't even talk about incontinence.  A positive outcome was assumed.   He did warn me, that he couldn't promise to spare the nerves until he was inside and could take a look at everything. 

I used Viagra since I already had it.    There is definitely a psychological component (fear!) to this whole PC-ED thing.  The vagina is suddenly an adversary, no longer a warm and inviting friend.   So maybe the 'ED Make Work" gives us something to keep our minds busy.  The brain is a powerful thing.  I'm not complaining, just curious.

After the consult I felt that I would really be letting him down if I didn't show up dry with a woody a week after the surgery!    He implied that this was the outcome he expected from all his Da Vinci patients.  Maybe that attitude set the stage for my recovery as much as his skill?

I'm now trying to take it to the next level, I don't mind the Viagra or the Cialis but I would like to get rid of the pump.  There is definitely a mental component to this ED business, and my wife's  "You're going to pump it, right"?  is NOT helping.

 

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