Posted 1/13/2007 9:02 AM (GMT -7)
Hi Ben,

You have created a wonderfully informative post of your PCa surgical experience. It will help many others as they go through this very freightening journey. You were very fortunate to have Dr. Partin as your urologist. He is certainly among the top rank surgeons in the world, and Johns Hopkins is the most respected hospital as well. I wish you continued good luck during your recovery, and I pray that you post nothing but "0" on future PSAs. Hopefully soon you will also become 100% dry; I was one of the average ones that took about 3 months to achieve 95%+ contienence. Now that it's been almost a year I'm 100% dry. So be patient, do your Kegels, walk as much as you can, and have faith that you will heal.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 

Posted 1/13/2007 11:10 AM (GMT -7)
Thanks Glen,

I know that the incontinence will get better. It helps to hear from people like you are are falling more into the "average" recovery time. Thanks for taking time to write.

Although I am happy for all the ones who had urinary control almost immediately, it makes me a tad envious that I am fighting for control for months when they had control almost immediately.

Sorry if I am complaining. All this just gets to me sometimes. I keep telling my wife if I can ever find a PC complaint desk, I am really going to let the people in charge have an earful.

Ben


DIAGNOSIS: 09/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margin at apex.) Negative seminal vesicles, lymph nodes, and bone scan.
 
RECURRENCE: Due to Gleason 10/positive margins, I am told odds of recurrence are high. Having PSA tested every three months. So far, it remains < 0.008. 
 

Post Edited (BenEcho10) : 4/28/2009 1:12:39 PM (GMT-6)

Posted 1/13/2007 9:01 PM (GMT -7)
Hey Ben,

I got your message about Kegels on my thread but though I would answer on yours.

When the doc told me how to do the Kegels, I thought that it sounded like a lot of reps but it really isn't. It goes very easy once you get in the routine. They work for me. I miss doing them when I am at work or are very busy and forget, then I get to pay with a few small leaks when I strain or get really tired. That is why I put the adage at the bottom of my page....

Good luck...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
            "Squeeze before you sneeze!"

Posted 1/13/2007 9:13 PM (GMT -7)
Thanks Jim,

QUICK REPRINT FOR OTHERS READING THIS: Jim's doctor said to do kegels as follows: Do 5 kegels per set holding each kegel for 5 seconds and then relaxing for 5 seconds between. Repeat 10 sets per day.

I really like your idea of doing them on the hour. This makes it easier to remember and if I miss several sets when busy at work, I can still do them on a different hour and still pretty easily hit 10 sets per day.

If nothing else, I at least feel like I am fighting the incontinence with this routine. Frankly, I have been getting so frustrated by my lack of progress that I have been tapering off the kegels which is counterproductive. Hopefully, this new routine will get me reenergized.

Ben


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage 2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: First post op PSA was 0.00 in 12/06.

Post Edited (BenEcho10) : 1/13/2007 9:24:24 PM (GMT-7)

Posted 1/13/2007 10:12 PM (GMT -7)
Hi Ben,   This is a “Powerful”   Personal Journey Thread!!!!!     I hope you don’t mind me placing a link to your 1 st Thread.   It is a very “powerful” individual topic thread and with over 550 views…26 postings and all of this in just 8 days ~ this speaks for itself on the importance of this thread. ** Click on this link…. Sex and Incontinence   Started by BenEcho10 on January 6 th , 2007.   I am thrilled that you’ve started a Personal Journal to share with us.   With a Personal Thread…… Journal / Diary / Page…. We get a true understanding of where a person is or has been, where they are or have been, and where they are today, and where they are headed!!!!   **Individual Topic Threads are very important…. Definitely!!!!  Journals let Newbies understand the individuals and see their path.  And to me ~ that’s very important… as important as the individual topics.   Thank you so much for your sharing... In Friendship ~ Lee & Buddy mama bluebird - Lee & Buddy… from North Carolina Link to our personal journey…>>>      Our Journey ~ Sharing is Caring   April 3, 2006  53 on surgery day RRP / Radical Retropubic Prostatectomy with "wide excision" PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate June 29th ~ PSA Less than 0.1 Non-detectable
Posted 1/13/2007 10:33 PM (GMT -7)
Hi Lee & Buddy,

Thanks for your post. I am happy to have the link to my "topic" thread included here in my "journal." Thanks for adding it.

Thanks also for your words of encouragement.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage 2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: First post op PSA was 0.00 in 12/06.

Posted 1/13/2007 10:42 PM (GMT -7)
GreenAcres,

You and I both posted at the same moment this morning (8:44 am central time) and somehow, as a result, I missed your post until just now.

I totally agree with you about the surgery. We remain convinced it was the right thing to do. Maybe we got all the cancer. If not, at least we gave it our best shot and still removed a lot of cancer cells.

I also completely agree with you about leaving the doctor's office and then realizing that you didn't get answers to all your questions. We have taken to trying to write down our questions before we even go. It is still hard to cover everything especially if the doctor introduces major new information into the discussion.

I am sorry to hear that you also are still battling the incontinence. This has been very frustrating for me but I am heartened to hear of other's successes. I am changing my kegel routine (see posting today three up on this thread.) Maybe that will help.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage 2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: First post op PSA was 0.00 in 12/06.

Posted 1/15/2007 7:00 AM (GMT -7)
Hi, all. Ben, even when we know going into this what we'll be dealing with, it's still an emotional and intellectual struggle - after all, if it weren't important to us, we wouldn't be fighting so hard to get it back (i.e., incontinence, sexual function).

So, we've been experimenting with NOT doing kegels (don't anyone shoot us), because I thought maybe it was a matter of "overdoing." Jim, did your doc tell you to do that many repetitions after surgery? (I'm going to hunt down your thread in a minute.) Husb. had been 2x/day religiously since post-cath. We know (from a comment from Kay), that it will certainly resolve itself within the year. Unless, of course, we're in that 1% category that never regains continence - and we joke about the fact we've been in 100% of every bad category to date.

OK, back to kegels, then!
Husband age 65
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now
 

Posted 1/15/2007 9:47 AM (GMT -7)
Hi Greeacres,

My doc told me about the Kegel routine on the day he took out the catheter. (He told me once, then shook his finger in my face and told me again.) I had continence after about 8 hours on that day but am still doing the excerises after 5 weeks post-op.

One day I doubled them thinking that if some is good, a lot more must be better. I ended up with a wet bed that night. It sounds like a lot of reps but spread out over the day, it really isn't. I never feel any strain and stay constantly dry.

We are all different and recovering continence and potency seems to require us to tailor our routines to our own situations. I believe that the one common element that we all require is a positive attitude, believing that we will recover.

Good luck...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04.  Next PSA on 4/4/07.
 
            "I have cancer but cancer does NOT have me!"

Posted 1/15/2007 7:53 PM (GMT -7)
Ben:

I'm a couple of years older than you and Partin was also my surgeon. Had RRP on 2 Aug. 06. The time to regain continence is different for everyone. However, sounds to me you are making progress. Soon you will be fully continent. You just have to have patience. Regarding ED, again sounds like you are making progress. If you were able to achieve 50% erection within two months of surgery, rest assured Dr. P saved your bundles. Takes most people a lot longer than that to regain potency. This aspect will only get better in time.

The number one goal of surgery is cancer cure. I'm impressed with your post surgery PSA of <0.1. Be sure to send your three month PSA to Dr. P. I'd say the most important thing you need to do is follow your PSA closely and any change should be reported to Dr. P. His nurse, Robin, is a great source of quick information if you have any future questions or concerns.
Posted 1/15/2007 8:25 PM (GMT -7)
SJC,

Wow. Your surgery was also done by Dr. Partin. Small world.

Thanks for your comments. It is nice to hear from someone who has been down the exact same road and is three months ahead of me. I know that incontinence will get better but it sure is frustrating while I wait. As my wife says, I was very patient for about 30 days after the surgery. After that, my patience was exhausted.

Ben


DIAGNOSIS: 09/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margin at apex.) Negative seminal vesicles, lymph nodes, and bone scan.
 
RECURRENCE: Due to Gleason 10/positive margins, I am told odds of recurrence are high. Having PSA tested every three months. So far, it remains < 0.008. 
 

Post Edited (BenEcho10) : 4/28/2009 1:14:38 PM (GMT-6)

Posted 1/17/2007 7:02 PM (GMT -7)
HIGH GLEASON:

Hi all,

I have been continuing to research the implications of a my high Gleason and positive margins. From what I have studied, it sounds like my chance of recurrence within 7 years is 50% or more.

I am confused by the conflicting information that I have heard about whether it is better to go ahead and start immediate radiation and/or hormone treatments in the near future even with a 0 PSA right now or is it better to wait until my PSA increases (maybe it won't increase for years or even never.) I have heard that the sooner you start follow-on treatment the better the odds of killing the cancer or at least slowing the advance of any future recurring cancer and thus extending my life. On the other hand, I only have a chance of recurrence vs. the certainty of damage and side effects from the radiation and hormone treatment. What a terrible decision to force on someone. This disease absolutely, positively, stinks.

Does anyone have any thoughts on this subject or know of useful reference books or internet sites?

It is depressing to even consider the fact that I may not be done with this thing.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage 2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: First post op PSA was 0.00 in 12/06.

Posted 1/17/2007 7:32 PM (GMT -7)
Ben,

---Heal as much as you can before doing anything more. 0.00 is worth waiting a short while IMHO but you have to do what is right for you.

---If you can get a year...maybe forever without further treatment, that would be a wonderful blessing. Somebody has to be that 50%! If indeed your cancer has spread, it'll show its face within months most likely.

---I know there is a protocol being used that takes a high risk case and slams it for something like 18 months with hormone deprivation and or chemotherapy. So far there is some promising early results.

Get into the archives of Entrez PubMed @www.ncbi.nlm.nih.gov or prostateline.com.....There are thousands of articles and abstracts that might help. IMO...and that's all it is; if it does reappear early, it won't be locally advanced therefore not going to be helped much by localized radiation. IF however the rise does occur (if its going to that is)more than 2- 3 years down the road then most likely the spread is local, not systemic. 0.00 may only last a year, it might last forever. So far 0.00 still means no cancer is detectable!!!

Good Luck, Swim
Posted 1/18/2007 1:24 PM (GMT -7)
Thanks Swim,

Sometimes I just get a bit overwhelmed by all this. It is bad enough to have PCa but to also have a high Gleason and positive margins just stinks.

Yesterday was a very low day for me. In fact I got so worked up, I woke up light headed and dizzy and had to take a sick day today.

I am doing better this afternoon both physically and emotionally.

I will look at the websites that you suggest. I need to start doing more research on the advisability of additional followup treatment but I have put it off out of fear that I might learn that additional treatment is the best course of action. Of course, if I need it, I will do it but I don't WANT it.

Thanks for your kind words both now and over the past few weeks. It helps both to put my thoughts into words and to hear back from others.

Ben


DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Post Edited (BenEcho10) : 1/18/2007 4:10:30 PM (GMT-7)

Posted 1/18/2007 3:22 PM (GMT -7)

Hey Ben:

I understand your concern.  If I were in your shoes, I would consult with the folks at Hopkins.  You're Dr. Partin's patient.  He's got the knowledge to give you the most authoritative advice than anything you can find on the internet.  That's why we both went to him in the first place.

Posted 1/18/2007 4:17 PM (GMT -7)
Hi SJC,

You are right about following up with Dr. Partin. I will probably wait, do a three month PSA as he asked (about a month from now), and then follow up with him after that.

I have found it a bit difficult to followup with him (mostly Robin actually) over the phone. Somehow it seems more rushed than an office meeting. It feels like I can't get more than 5 minutes of their time.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Surgical pathology Gleason 10. Stage T3a (positive margins.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00.

Posted 1/18/2007 4:18 PM (GMT -7)
Hi Ben,
 
Thanks so much for this comprehensive, informative post.  Extremely helpful to read as many experiences as possible while going through this.
 
I have one question, you said:
 
He also stunned us by telling us that it was a big error for Urologist #1 to have put me on Casodex since this had shrunk the prostate which would make it much more difficult to see during surgery and thus more difficult to spare the erectile nerves.
 
First, not aware of what Casodex is?  So was wondering what that was for.
 
Second, main reason I am asking about this part of your post, is that Ken went on Avodart when first diagnosed to shrink the prostate (Ken had enlarged prostate though 73 ... not sure if yours was enlarged?).  Anyway our robotic guy  felt and thought the prostate had shrunk to 30-38 by feel and that was a GOOD thing and made it a shorter, easier procedure? 
 
We haven't gone through surgery yet, but when I read that experience of yours got a little concerned.  But maybe it is because yours was normal and then shrunk below that or maybe a difference between open and robotic?  I don't expect you to necessarily know, but if you or anyone out there has insight on this would be appreciated. 
 
Thanks,
 
Tanya and Ken
 
 
Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment: DaVinci.  Sheduled late February

Posted 1/18/2007 4:18 PM (GMT -7)
This is a heck of a ride Ben. I guess we've all had more fun. You are obviously an intelligent man and one way, or another, I expect you to prevail. Sure wish none of us had to experience the misery, though.

Regards,

Bill


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!

Post Edited (jetguy) : 1/18/2007 7:58:54 PM (GMT-7)

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