3 Mo post-surgery -- Meeting with Uro

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geezer99
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Date Joined Apr 2009
Total Posts : 990
   Posted 7/14/2009 11:50 AM (GMT -6)   
As I reported two weeks ago my three month PSA came back at 0.0 (actually 0.00) Today my wife and I met with my urologist. I have written a rather long report in the hope that it will be of use to those who are still headed this direction.

He was concerned with the pathology report both the small positive margin and more so with the extracapsular extensions, one of which he reported had penetrated the outer layer of the sheath. He talked about the advisability of going directly to radiation as opposed to watching the PSA over the coming months. He said that it was unclear if there was a benefit to treating my case immediately and that, since the odds were still 70% for no biological progression, immediate action carried a risk of unnecessary treatment. His opinion was that it was likely to be OK to wait and watch my PSA. He indicated that 0.5 was a point at which to definitely consider treatment although he did not think that even waiting for 2.0 would be all that bad. He said that there was some evidence that treating at 0.2 might be more advisable. He was ready to schedule the next PSA test in six months, but my wife intervened and said that we were so stressed that 3 months would be better, he agreed. (A good argument for having two people listening.)

I raised the issue that my urinary stream was less than half what it was before the surgery. He said that the more important issue was that I was able to completely empty my bladder (as confirmed by ultrasound.) He said that this issue could probably be improved but that any poking around carried some risk so I had to decide just how much it bothered me. (I decided to do nothing for now.)

He talked about incontinence and said that he expected that I would be pad free in three to six months. He said he could prescribe medication that would probably let me stop pads now and that in three months we could stop the drug and see if I needed it. I opted to forego the drug. He also suggested that I could go pad free when I was just around the house. This would give me a better idea of when and how much I leaked and that I might learn to anticipate leakage and “tighten up” if I knew when to do it.

On the ED front he said that at three months I would probably find that oral meds had some effect but not enough for intercourse. He said that I would gradually be able to have more of a natural erection and that then the drugs would push it enough to be useful.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 7/14/2009 1:17 PM (GMT -6)   
Sounds like a good news all around. Congrats!

Father died from poorly differentiated PCa @ 78 - normal PSA and DRE

5 biopsies over 4 years negative while PSA going from 3.8 to 28

Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere+Avastin)

PSA prior to treatment on 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60

RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins

PSA undetectable for 8 months, then 2/6/2009-0.10, 4/26/2009-0.17, 5/22/2009-0.20, 6/11/2009-0.27

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, IMRT to start mid-Aug


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/14/2009 1:38 PM (GMT -6)   
Good news, and an interesting, informative posting.

Thanks, Roger
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently coping with incontinence issues, but making progress!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/14/2009 2:27 PM (GMT -6)   
Geezer, great post. You gave me a lot of info from your doc visit that is very pertinent to what I am facing right now. Mine said the same thing about the lack of stream while whizzing. My dr. was afraid to open up things too much in fear of causing perm. incontinence. He said the same thing about the ability to empty the entire bladder, even if it is slow.

Best to you brother.
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
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/14/2009 2:45 PM (GMT -6)   
Purgatory
Yes, I was thinking of you during the office visit. I suggested to my doctor that the new, high accuracy tests (which is what he uses) were still to new to interpret the results. He pointed out that there is a lag in the medical literature, and so, while there might not be published data, he felt that he saw enough cases to make reasonable judgments.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/14/2009 3:15 PM (GMT -6)   
Sounds like you are on a roll Geezer, and that you have a good uro behind you. Appreciate your presence on this forum. I am noticing a lot of dropouts here. Once guys become continent or get the ED thing fixed, they kind of slide away. Thats a shame. We need the experience.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/14/2009 5:33 PM (GMT -6)   
In one sense I agree with goodlife about dropouts, but on the other hand, these are guys who no longer are worried about PC. What a great position to be in and who can say anything but good about putting former worries behind you.

Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 7/14/2009 11:58 PM (GMT -6)   
The problem with people that have good results on their cancer and disappear from this forum is that it only leaves people with ongoing problems and it does not give the new comers a good impression of whether they are going to beat his cancer or not
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery planned for 7/27/09
 


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/15/2009 9:17 AM (GMT -6)   
Colin,
While reading your post it occurred to me that, statistically, you are already cured!

Since the majority of men who schedule a prostectomy go through with them and the majority of prostectomys result in no biological progression, the numbers must lead us to this conclusion.

Yes, statistics don’t lie but liars use statistics – this was intended only to encourage you as you approach surgery

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/15/2009 4:47 PM (GMT -6)   

Well time will tell if the docs thoughts are precise or not.  My opinion is verify anything that is said or promised or even inferred too. Be proactive and go get a psa test wherever you feel like it, go elsewhere just to see results. Wait for what????

Anyway good luck to you, also get the copy of the psa test, do not rely on anybodys verbal that it is 0.0 or zero. I have seen some stories over the years that would change people perception of relying without verifying.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 7/15/2009 6:43 PM (GMT -6)   
Then there are old buzzards like me that you can't get rid of, keep coming back over and over again. Like I tell my youngsters, old age and trechory overcomes youth and skill every time.
Age 57, 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 capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/15/2009 8:33 PM (GMT -6)   
Geezer,

I am glad to hear about your zero. I am in a very similar situation. I got my 3 month today and it was a zero.

Because I also had and EPE, and a Gleason 9, they want me to pursue radiation. I am having a hard time making the decision. The study that I saw today said that http://prostatecancerinfolink.net/2009/01/22/new-data-from-two-studies-on-adjuvant-radiation-and-thalidomide-post-surgery/ is the first study results I have seen that makes some sense to me.

Hopefully we can proceed on this journey together through this forum.

Thanks for sharing !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
# mont PSA <.01 (different lab)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 7/15/2009 8:36 PM (GMT -6)   
Geezer,

I am glad to hear about your zero. I am in a very similar situation. I got my 3 month today and it was a zero.

Because I also had and EPE, and a Gleason 9, they want me to pursue radiation. I am having a hard time making the decision. The study that I saw today said that http://prostatecancerinfolink.net/2009/01/22/new-data-from-two-studies-on-adjuvant-radiation-and-thalidomide-post-surgery/ is the first study results I have seen that makes some sense to me.

Hopefully we can proceed on this journey together through this forum.

Thanks for sharing !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
# mont PSA <.01 (different lab)


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/16/2009 8:58 AM (GMT -6)   
goodlife
Thanks for the reference. Actually only the first study (J Urol. 2009 Mar;181(3):1104-13) used thalidomide. In this study, ADT was alternated with thalidomide in a double blind, placebo controlled trial. The difference in time to PSA increase was pretty impressive -- 17.1 months versus 6.6 months. On the other hand thalidomide had notable side effects including “peripheral neuropathy, dyspnea, dizziness, fatigue and alteration in consciousness, including depression or cognitive disturbances,” but most of these were dealt with by dose reductions.

The other study (J Urol. 2009 Mar, 181(3): 956-62) involved adjuvant radiation. It is important because of its very long follow-up time – an average of 12.7 years. Metastasis-free survival was significantly greater with radiotherapy (93 of 214 events on the radiotherapy arm vs 114 of 211 events on observation.) Survival improved significantly with adjuvant radiation (88 deaths of 214 on the radiotherapy arm vs 110 deaths of 211 on observation)

I guess that the take-away point is that both ADT and radiation can be effective salvage treatments.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 7/16/2009 9:06 AM (GMT -6)   
Thanks Geezer

I need all the encouragement I can get because at the moment I am beginning to get cold feet about the operation and wondering if I am doing the right thing
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
 First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery planned for 7/27/09
 


KeyWestPirate
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted 7/16/2009 9:37 AM (GMT -6)   
Geezer,
 
Congratulations on your outcome!!
Sounds like you found a great doctor, his concern for you and his level of engagement with you and your wife really comes through in the post.
Test again in 3 month?  Fer sure! 
 
 Did you post the name of your surgeon and his city?  There could be others out there who are searching for someone of his caliber.
 
To the newly DX'd reading this post, you too can have a great outcome if you   choose your treatment provider carefully

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/16/2009 9:46 AM (GMT -6)   
Colin
In less than two weeks they are going to cut you open, snip out bits of your insides and re-arrange what is left. If you were not having second thoughts then (and here I violate the rules of this board by giving a medical diagnosis) you would be crazy!

You have considered your alternatives and made an informed choice. That thought is an answer to your feelings.

In less than three weeks you are going to come home from the hospital. You are going to have that d*mn*d catheter and aches when you move the wrong way, but you will hold your son and you will know exactly why you made your choice.
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