Just when you think you've been tortured enough - Uro/Surgeon's call this morning

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/22/2009 8:24 AM (GMT -6)   
Just got off the phone with the nurse of my Uro/Surgeon from his main office in Greenville, not in Easley by  my house.  They want me to come in this Thursday at 330 pm, and btw, make sure you bring someone with you to drive you home.  Gulp, that didnt sound good.  He wants to consult with me first, I have to assume he consulted with my new Rad. Oncologist after yesterdays event at the radiation center.  The nurse said he wants to, can you belive this, do another dialation process on me.  She said if I agree, they will heavily sedate me, but not put me under, and put me through the process.  Guess the rad. doc. convinced him I am blocking up again and the radiation willl make it worse.  If I agree, that means I would leave with catheter number 8 ,or 9 if you count yesterday's temporary one.  I am about out of my mind with all this.
 
The last dialation left me traumatized for real, and took weeks to heal.  I am suppose to start getting zapped on Monday, October 5th.  Perhaps when I consult with him, there will be other options.  I have a feeling that he is against the suprapubic cath idea for some reason, shouldnt make him any difference, not happening to him.
 
But you know what, the new non-passive me may just not agree with whatever he wants to do.  And you know something else, I may request a transfer to another urologist/surgeon.  If it doesn't have a plausible plan that makes perfect sense, this isnt going to happen.  Enough is enough, two corrective surgeries within 6 months haven't worked anyway.
 
Told my wife last night, by the time that everyone gets through screwing around with me, there won't be anything left of me, physicially or mentally.  Close to the edge right now, and strongly considering going back on strong antidepressenets for the first time in two years.
 
But hey, that's the latest news.  It gets gooder and gooder.
 
David in sC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 9/22/2009 8:31 AM (GMT -6)   
My dear friend: what hell you have been through - and continue to go through! It is simply not fair!!

Perhaps it is time to seek another urologist - sounds like this one has pushed you about as far as you can get pushed! I'm all for not being Mr. Nice Guy anymore.

I must admit that you (and your dear wife) have been much more patient in all this than I would have been. But then I'm a hot blooded Italian/German from New York City and we're not known for our patience.

Keep us posted David...you continue in my prayers.

Sephie from NY
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a due to minuscule extraprostectic extension in posterior left. Margins, bladder neck and SV clean. Gleason 3+4 (no change from biopsy). PSA of 0.0 every 3 months since surgery. In August 2009, PSA reading of 0.1 - urologist will retest in 4 weeks. Hoping this is a blip. Incontinence good to excellent but still having issues with leakage. ED is a work in progress (with the help of Viagra).


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 9/22/2009 8:35 AM (GMT -6)   
Oh David... There's nothing I can say that doesn't sound contrite. What a raw deal...
I wish you well, friend. Jeff

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/22/2009 8:36 AM (GMT -6)   
Dang David, you just can't seem to catch a break of any kind from anyone. Here I sit happy as hell with the SP and you're getting the feeling that you dr. is against it. If my dr. was here today I would ask him about it and find out why he thinks anyone would be against it given what you have been through. As you know I am a real newbie to all of this, but even I can't understand this part of your equation.

I am going on a walk today to the clinic and if any of the dr.s are there I will ask the question just to satisfy my own curiosity. If I get any good info do you want me to pass it along?

As always you know that my prayers and blessings will be with you today and everyday until you get all of this resolved and behind you. My faith is such that I believe that you will find peace and positive answers soon.

Sonny
60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery done on September 17th by Dr. Menon, Vattikuti Urology Institute, Henry Ford Medical Center, Detroit.


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 9/22/2009 8:38 AM (GMT -6)   
Sorry to hear of your most recent developments. Just do what is right for yourself, your family and your own well being. There are at times, answers that don't come from within.

Take care,
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 9/22/2009 8:44 AM (GMT -6)   
If it makes you feel any better we can all get out some vodoo dolls and stick catheters in them pretending its your urologist.

Larry
Father treated for Prostate Cancer in 1997 with Proton Beam - Still doing well.
My Stats
Age at diagnosis 54, PSA 5.1
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin 1.8 cm in length Noted in Right Apex


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 9/22/2009 9:04 AM (GMT -6)   
David,
I would think that if they could sedate you for dialation, they could give you a supra pubic catheter unless there is good reason not to. It would make things much more comfortable for you. I would ask my Uro why. He is not the one that is suffering through all of this. Just a thought.
Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable
03/02/09- 1 yr. post-op PSA .09 Undetectable
05/13/09   PSA .18 (ouch)
Started IMRT June 13, 2009
Completed 37 treatments July 31, 2009 (66.6gy)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 9/22/2009 9:07 AM (GMT -6)   
David,
Well here you go again and they must think your Superman!!!! And yes, I would take the anti-depressants in a heartbeat, any day over pain med. Use them until things get settled and then take as you need. Not sure what is worse somedays, the emotions are the pain, but either way I will do what I need to do to get thru a day always hoping that the next day brings relief. You are in our prayers brother as is your family. I assume you are still working on your book, and what is the title again?
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/22/2009 9:09 AM (GMT -6)   
Sephie, thank you for your continued kindness, so much has happened in the "journey", that some might think its fiction, but I assure you its all true. We are a mixture of the Riley's and the O'Neills, couldn't be any more Irish if we tried. Both my grand father's came from Belfast.

Jeff, thank you, btw, I do realize that my uro/surgeon isn't the only show in town, I would hate to switch mid-stream, but will if it is in my best interest

Sonny, great idea, if there is anyone qualified to ask that question to, please do on my behalf, could use some more ammo before I meet the doctor on Thursday. Right now, I am more than 98% against his latest plan, so he has a lot of convincing to do, and my wife is a well seasoned nurse and she will be with me for the consultation this time before anything is done.

Les, thanks, but I am almost at the point where I don't know what to do, and I don't even want the burden of decision anymore, nothing seems to be working smooth. If the experts aren't getting it right, what am I suppose to do, just a mere patient.

Larry, sounds like fun, be despite my problems with all of this, he is still considered one of the best uro/surgeons not only in my area, but in the entire state with 30 years of experience and a long waiting list of potential patients. Hard to tell how much of this ordeal is my own screwed up body or him or both. Hard to quantify it.

David in SC, now with more to trouble my brain and worry about.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 9/22/2009 9:09 AM (GMT -6)   
Rotten news.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/22/2009 9:19 AM (GMT -6)   
Sheldon, for sure, may be in for a big fight Thursday, he's now ruffled the feathers of the Godfather of SC

bootheel, yeah, he's talking major sedation if we do the dialation, the other drs that heard about my formal one said they couldnt believe that i was put through one without any sedation or pain meds. and yes, a suprapubic cath can be easily installed with a local, being a urologist, sure he has done many over the years, so what's the problem?

michael, sincere thanks for your kindness
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 9/22/2009 10:33 AM (GMT -6)   
When life hands you a bowel of lemons – you crush em – add Tequila with ice and get hammered.
 
Then you go to the Thursday meeting and do what you do so well – you deal with it.
 
The rest of us will be here to lend a hand if needed when you get done.

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
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 9/22/2009 10:47 AM (GMT -6)   
David: No words can express my concern for you enough. I know that you are at your witts end. Hang in there my friend I do hope that something can be worked out to make this journey just a bit easier for you. Know that we are all here wishing you well.

Jeff T
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
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 288
   Posted 9/22/2009 11:14 AM (GMT -6)   
David, sorry to hear about more difficulties. You've come a long way and this will be in the rear view mirror soon. Our thoughts are with you.

Jake
Diagnosed 8/2008 Pre-op psa 4.2, Age 60 at dx
7 of 12 biopsies positive 3+3
DaVinci LRP 11/08
Post Op pathology clear margins, confined to prostate, absent extraprostatic extension, vascular or perineural. Gleason 3+4=7, 5-10% of 4 and location in right mid-gland.
3 month psa .1 2/09, 6 month .1 5/09, 9 month .2 8/09
broke ankle bones 6/09
Bone scan and next psa 10/09, lumbar spine backaches hopefully from more activity as recovering from ankle break.


CharlieTuneA
Regular Member


Date Joined Aug 2009
Total Posts : 37
   Posted 9/22/2009 11:29 AM (GMT -6)   
Ouch, David, what you have been through is rotten and shouldn't happen to anyone. Torture is definitely what it is. Maybe they have a waterboarding alternative, 'cause that sounds better than this. 
 
My thoughts are with you.
 
-Charlie

Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/16/09
After 10 days, cystogram revealed fistula
Catheter Removed 7/17/09
Fistula still evident week of 8/24
PSA 0.03
Catheter Reinserted 8/28/09

Continence is a future goal.


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 9/22/2009 11:45 AM (GMT -6)   
Greetings, David.  I'm on the road again - St Louis this time - so didn't see your message until just now. Man, you are really getting the short end of things.  I was hopeful your last surgery would do the trick for your urine flow but seems like you have more to go through.  I'm so sorry you are having to go through this.  I know you will go to your doctors visit prepared with all the right questions to ask and comments to make.  We have to be proactive about our care and I know you will be.  Please keep us posted - we'll continue to pray for you.  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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/22/2009 12:05 PM (GMT -6)   
steve - thanks, mabe we should get a gang from here and go with me, could use some extra muscle

jeff, hanging on the best i can, but sometimes that darn rope is getting so thin over my head, be easier to just let go

jake ,i hope so, thats all i want.

charlie - waterboarding sounds like a breeze, not any fun having metal rods shoved up your weiner, drugged or not drugged

david/cpa - you sure are on the road a lot, sure you couldn't use a well qualfied assistant? just be nice to go a week without a new crisis to deal with, lately its been bang bang bang. least my wife will be along this time to give a qualified medical prespective to whatever my uro/surgeon is scheming for me. there has to be a better solution, if the last dialation and corrective surgery didnt work, and its only been a bit over a month, why would he think another torture session would work?

david in sc, weiner already getting sore again thinking about all this
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/22/2009 3:27 PM (GMT -6)   
Thanks David,

I am going to post this in two places to make sure you see it, regarding the Supra Pubic (SP) catheter.

I talked with a Dr. today the is on the staff here at Henry Ford. He describes himself as an academic Urologist. He has been researching and teaching for the past 35 years. He and Dr. Menon were having a conversation where Dr. M was discussing a new approach he wanted to take in the surgery to remove the prostate. They discussed the advantages of being able to do it this new way and were excited about the reduction of trauma to the body, the more completely and easily the prostate could be removed and how the nerve sparing and incontinence issues could be better addressed. Dr. M said that the real drawback was that during and after this method he could not have any urine escaping into the area. They continued to talk and arrived at the possibilities of using the SP. It was about this time that a patient came to see Dr. M about PCa and surgery. When the discussion turned to having a catheter for 1-2 weeks, the patient told Dr. M. that if had to have a cath he would not do the surgery. He had already had a bad experience with caths.

Dr. M discussed with him at length his ideas about the new surgical procedures and the use of the SP and the patient agreed to be the first.
So for the last 2 years it is the only way they have done the surgery. They found it superior to the old methods and it addressed their other patient continued complaints about the foley.

When I asked the academic about the apparent unwillingness of other Dr.s to using the SP he said most likely it would take them out of their comfort zone. Dr.s are so busy just seeing their patients and attending their needs they don't have or don't take the time to stay abreast of advances in technology, techniques and developments. Hence their reluctance.

I described your situation as best I could. Told him about the 7 caths in 10 months and now with IMRT and blockage the prospect of having another for 2 months. I told him that you sensed reluctance on the part of your Dr. to use the SP. He said that of course he did not have your medical info in front of him, but he could see where the SP would be the perfect solution for your situation. He said that this was one of the main reasons why it was developed in the first place. He also said that you should really question you Dr. about his reluctance and added that he would have to have a very valid reason not to be using.

He lives here in the apartment bldg and I see him many times a day. I approached him the first place because I remembered him from my first meeting with Dr. M back in July. He sat in on the meeting, didn't say a whole lot then but observed and heard everything. Seems he works very closely with Dr. M in continued development of new and better ways to deal with PCa surgery. He said that one of the reasons that Dr. M is so successful is that he has the resources and the time to continually review processes and does not live the life of the overworked private practice physician/surgeon.

The whole conversation seemed to make a lot of sense.

Thought this might help.
60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery done on September 17th by Dr. Menon, Vattikuti Urology Institute, Henry Ford Medical Center, Detroit.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/22/2009 3:37 PM (GMT -6)   
Sonny, you are the man. I have printed off your above post, for my own consumption only, and wifey too. Probably wouldn't be possible, but would love to have his name and phone number if needed.

It will be interesting to see what my uro/surgeons "final solution" is intended to be. I was agitated as soon as his nurse (very competent, I might add) talked about sedating me, running another scope up me, and the dialation again. The "C" word and the "D" word get me real unglued these days, can't imagine why.

If I allow him to do this, he would have to leave a foley catheter in place (based on his past actions) for at least a week or ten days to heal. Last time, it made me bleed for almost 3 weeks, and needed pain pills for a full week after the procedure. I don't doubt that he can't sedate me enough to make the procedure comfortable, but with all that healing going on, it would interfere with the start of my IMRT on Monday October 5th. Either he has another part of a plan he will share with me Thursday afternoon, or else, he's grasping at straws.

I have gotten to know him pretty well in the past almost 2 years now, and he's pretty sharp, well read, and up to date in other areas concerning PC and its treatment, it would seem odd that he would agree to a suprapubic cath. for a couple of months considering he knows first hand what he has put me through. We shall see.

Appreciate the extra effort on your part, definitely will keep you posted and owe you a good lunch one day.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 9/22/2009 3:44 PM (GMT -6)   

David,

Continue to hang tough.

JT


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4276
   Posted 9/22/2009 4:01 PM (GMT -6)   

Hi David:

So sorry to hear this news...it just does not seem fair.  You and I had an emal discussion once re doctors.  I think if I was in your place I would consult another uro-doc ASAP before starting the next procedure.  It cannot hurt to have another opinion and may help a great deal.  I know you feel this guy is convenient and his practice is one of the best around, but will your insurance cover the office visit at Duke?  Before you get all stuck up with catheters again, maybe it's worth the drive.  You could even go up in the morning and back that night if the appointment was right.

Anyway, just a thought...I'm praying for you, my friend.

Tud


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 9/22/2009 4:04 PM (GMT -6)   
David I appreciate the offer for lunch. I have a better idea.

Weather this storm and get on the mind, my wife and I need a little trip. Been talking about that a lot since she had to take her disability retirement from work and I am using the GFMPH.

We'll pass through your area and take you and your wife to dinner.

You can't possibly know how much meeting you here has helped me in my time of need.

Whatta you say? Dinner sound good?

Sonny
60 years old
PSA November 2007 3.0
PSA May 2009 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

Surgery done on September 17th by Dr. Menon, Vattikuti Urology Institute, Henry Ford Medical Center, Detroit.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 9/22/2009 4:28 PM (GMT -6)   
Oh wow! You have got what my mother called "a hard row to hoe." I wish I were wise enough to say the words that would comfort and cheer you. Failing that I can only pray that the strength to endure comes to you.

Should you fire your uro? Well, why not ask him? Has your case gotten beyond his normal ability level. Is there someone else that you should be seeing? See what he has to say -- not about the next treatment, but about his comfort zone with your case.
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 - now light pads


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/22/2009 5:44 PM (GMT -6)   
JohnT - trying my best brother, getting to where I am afraid to look in front of me anymore. Enough is enough I say.

Tud, my wife and I are discussing the possibility of a switch in my medical team. Now that my open RP is 10 months plus behind me, and my guy has had 2 surgical shots at the blockages, wouldn't be that devestating to swtich if need be. However, we plan to go open minded to the Consultation with him Wednesday, and unless my wife and I are 100% convinced his new game plan makes sense, has a high probability of working, and knowing what his back up plan is if it doesnt work in the midst of salvage radiation, its not going to happen, sedated or not. Not as concerned about the pain factor (that's what drugs are for), as I am in a failed attempt again or a misguided plan, always thankful for your thoughts and ideas

Sonny, refresh my memory, know you had your surgery in Detroit, but where do you hail from? I am right off of I-85, about halfway between Atlanta and Charlotte, 10 miles west of Greenville SC. THis is the land of great BBQ if you like that.

geezer, good advice, not to sound cold or unreasonable, but i dont care about his comfort factor, i care about mine. if i wrote down a list of everything that transpired on this journey from a shock and awe pain point of view, no one in their right mind would want to consent to anything else. i am a very patient person by nature, but this process has worn me down.

david in sc
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20%, Contained in capsule, 1 pos margin
2009 PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/09 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl., agreed to start radiation, does not rec. HT at this time, mapping on 9/21/9


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 9/22/2009 7:38 PM (GMT -6)   
David,

Nothing can be said that hasn't been said. This is where your character really kicks in. You have shown again and again that you are up to the task.

We all wish there was something we could do to help. We are all out here pulling for you.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
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
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)

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