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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/23/2010 4:17 PM (GMT -6)   
That's one good thing about living in a lesser populated area, doesn't take long to get appointments for anything.  I will be having my 5th corrective surgery a week from today, next Tuesday at 1000.  Expected to take 30-45 minutes.  The surgeon wants to finish what was not possible yesterday during an in-office procedure.  He wants to do another hard dialation.  Yesterday's was aborted due to extreme pain, despite being heavily sedated.  Once I can be re-opened (bladder neck), he wants it to heal a few days, with a fresh SP catheter in place (#13).  Then he wants to test the opening, by bypassing the catheter and seeing how I urinate on my own.  After a reasonable test period, several days, if all goes well, the SP catheter can be removed and I will free again on my own.
 
For those not convinced of the strategies being utilized, research for yourself, and you will see how uncommon having chronic strictures like I have experienced really are.  It is not uncommon in my research, of men having to be dialated 3-6 times a year to stay open.  Under normal circumstances, yesterday's in-office procedure should have worked, especially with as much Demerol that was shot into me  (that part was actual quite blissful by itself).  And it worked well enough, that when they inserted the scope, I barely knew what was going on.  Unfortunately, after feeding in the guide wire, the pain began to rise quickly, as each new diameter dialation rod was inserted.  By the 2nd one, pain was almost totally unbearable, and a small attempt was made with the 3rd, and that's when it was aborted.  So for the critics ,its not like there isn't a rhyme and reason for doing and attempting what has been done.  There are limited choices in treating what ails me, and things are being done with caution since the radiation did so much damage to me, which makes the stricture problem even more complex to deal with.
 
As mentioned elsewhere, some of the other options are much more extreme and risky, some neither my doctor or myself wish to entertain at this time.
 
If this attempt doesn't work, or doesn't last for more than a month like the previous one, then it will be back to square one, a thought that saddens and depresses me after all these attempts and recoveries from attempts.  My body is sick of the whole process, it will be tough even going through another surgery this soon from the last one.
 
I really am starting to think it would be easier just to submitt by choice to perm use of the SP cath, and just have them changed out every 4-6 weeks.  Don't know, but doing the best I can.
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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4835
   Posted 2/23/2010 4:42 PM (GMT -6)   
I'm waiting to hear back from Guinness World Records...I think they might want to hear your storydevil
 
Stay tuned and keep your chin up.

defender3
Regular Member


Date Joined Nov 2009
Total Posts : 98
   Posted 2/23/2010 4:46 PM (GMT -6)   
I'm hoping for the best for ya - you've been through plenty. Is there any use in having an artifical neck implanted?

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 2/23/2010 5:00 PM (GMT -6)   

David:

 

Yet nowhere in your informative post do you even mention seeking other opinions. I know you say you've done some research and the situation is not uncommon. But YOUR situation certainly is.

I still say: what can it hurt to write a long letter detailing your journey and sending it to a few of the centers of excellence?

I am probably getting overbearing in my posts to you, so I'll try not to bug you with the same suggestion again and again.

I am also totally sick of this darn disease ruling my life and I haven't gone through 1% of what you have.

Good luck with the surgery. Hopefully, this time will be the charm.

 

Mel


63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms. 

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights.

Next Event: First post-op PSA on 3/1/10


Jakester
Regular Member


Date Joined Aug 2009
Total Posts : 286
   Posted 2/23/2010 5:02 PM (GMT -6)   
Until they run out of "less risky" options, I would do the same as you have decided. Only then would I go for experimental or high risk options. These higher risk techniques might work but so might the low risk. Keep your spirits high, peeing on demand is important but you have much more going for you (one being the incredible service and example you have provided us).

Just one of your many friends here,
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
9/21/09 Bone scan clear, psa still .2
11/12/09 chest xray was clear, psa however up to .3,
01/05/10 psa still .3, radiation setup done with tats, 01/19/10 started 39 sessions 70.2gy


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/23/2010 5:20 PM (GMT -6)   
I hope you do well , myself I would have fired this doc long ago and went elsewhere, he is beyond the 3-strikes and your out rule in my book. So who's on first? What's on second?
Maybe this time the home run or you might steal the bases or you could walk... Cheap analogies..forget those...good luck to you and you are overdue for luck so hope it rolls your way.
Youth is wasted on the Young-(W.C. Fields)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4183
   Posted 2/23/2010 5:40 PM (GMT -6)   

David:

You are getting some rather blunt advice on this and your other thread.  I must say that I think James said it rather well:

David, were it me, at this point, I would be looking for the nations best specialists of this condition (abnormal scarring and tissue growth of bladder necks) anywhere in the country and trying to get a second opinion and alternate exam and diagnosis. The fact that you have such an abnormal growth problem is one that would tell me that even the best generalist may not be effective in treating your individual condition. Not saying your doctor is less than great, but there's a reason doctors do specialize and you have the best case diagnosis for needing a specialist now as anyone I have heard of. Sorry if you disagree, but I think it is important that you look for specialists now, before committing to a course of further surgery, redoing the bladder neck or stents or permanent incontinece.. shakehead wink

None of us can walk in your shoes but I think most of us would advise that you take those shoes elsewhere ASAP without submitting to ANY more procedures from your current medical team.  Sorry if that sounds harsh, but hopefuly you will agree it is logical and provided in a spirit of caring about you.
 
Tudpock
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 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 2/23/2010 6:06 PM (GMT -6)   
David: I have been reading and re-reading. I have been thinking of how to post on this topic and can not figure out how to work exactly what I want to say without being to blunt. First you know that I am your friend and I think everyone of us on HW feels a very close connection to you. What I am hearing from them in the post is the furstration and trying to figure a way to get you some help.

As for myself I can not tell you what to do and would never put myself on that level with you but I can tell you what I would do. I think there are some valid points made by many here. I would try to find the best in the nation. Would that make a difference "I have no idea". You wife is in the medical field and you are very knowledgable. I know you are so very frustrated amd worried, know that we are with you and care more than you can even imagine.

Take care my friend

You Cajun Friend
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
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 250
   Posted 2/23/2010 6:19 PM (GMT -6)   
David nobody knows your condition better than you do but i agree with Tudpock and the rest, but its your decision, i hope it turns out better than the other attempts
Good luck!!!!!!!!!!!!!!!!!!!
Deerhunter

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 665
   Posted 2/23/2010 6:44 PM (GMT -6)   
Purgatory, I don't know your whole story but I'm praying for relief and a healthy end to your troubles.
Regards, Jeff
Gleason, 3+4; PSA, 7.9
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
pT2c, prostate 60.2g, margins: negative; perineural invasion: present; lymphatic invasion: present; 3 lymph nodes removed, clear; seminal vesicle invasion: absent; Gleason 4 comprises 5-10% of carcinoma
PSA consistently <0.1 since surgery until Oct 09, 0.1; retested Oct 09, <0.1,
Jan 10, 0.2
retest Feb 1 confirmed 0.2


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/23/2010 7:08 PM (GMT -6)   
Steve, if you think we could make any money off of it, by all means contact them for me, I will split 50/50 with you

Ohio State - no comment

Mel - I don't post every detail of my PC journey online at HW, might seem that way, but no one but myself, my wife and family, and my medical team, knows what has been discussed or talked about as possible alternative options. I am not blindly being led around by my doctors as some here seem to be hinting at. With me being out of work full time, we have limited resources to what I can and can't do, and I do have a practical side, almost pragmatic attitude about the whole thing.

zufus - if i felt unsafe with this doctor, would have ditched him long ago, he has an outstanding reputation and record in my local area, and he has put a lot of thought into these different procedures, he has also been stuck dealing with this probelm again after the radiation obviously did a negative number in that area. He could have easily passed me off to someone else, but he's sticking with it, trying to solve the problem both short term and long term. i have ditched dr's over the years, not afraid to do so again. thanks for your concern

tud, i did find your comment a bit harsh, but like most things in life, one has to be in the complete picture to know the complete situation, and i respect your opinion, i know you do care and i appreciate that

jeff, my cajun friend, i know your heart is in a good place, always appreciate your sincere concern

thank you deer hunter and jeff above.
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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/23/2010 7:27 PM (GMT -6)   
David,
I will nor offer an advice but I will offer a prayer for a successful surgery and a complete recovery. May this be the last catheter in your life. Good luck brother.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6982
   Posted 2/23/2010 7:42 PM (GMT -6)   
David, all I can say is hang in there.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/23/2010 7:57 PM (GMT -6)   
Thank you, Brother Ed, and 142 both. 142, how about giving us a name sometime, don't like thinking of you as just a number
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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 2/23/2010 8:20 PM (GMT -6)   
David,
I am so sorry to read about your ongoing problems.  I hope this next procedure will be your last.  From my own experience, I can tell you that the bladder neck dilation can work.  I needed three visits to the uro and the last one in July of 09 seems to have done the job.   Try to stay positive.
 
Good luck.
Carlos

Diagnosed 2/2008 at age 71, PSA 9.1, Gleason 8 (5+3)and stage T1c. 
Robotic surgery 5/2008, nerves spared, All margins, SV and lymph nodes were neg. 
Staged pT2c, Gleason sum 8 (5+3).
Continent at 6 weeks. 
PSA <0.1 at 20 months, Jan. 4, 2010.


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 2/23/2010 8:24 PM (GMT -6)   
David,
It sounds like all the advice comes from a good place and in the hearts of those that offer it. Not sure what I would do, but I know you well enough that your a research man and give a lot of thought to your tx choices. I chose my IMRT close to home as it was convenient and the oncologist has a good reputation. I could have gone to Emory or some other highly reputable place, but my body was tired, in pain and I wanted to go some place close to home. I dont look back and am happy with the tx and I am getting some much needed rest. Do what you need to do for yourself my friend.
be blessed.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/23/2010 8:26 PM (GMT -6)   
Thanks for the input, Carlos, sorry you had to go through some of this too, glad it working for you so far. With some men, a stricture can be a one time episode, and with others, it can be chronic and ongoing. The second group is in the minority for sure.
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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


pigeonflyer
Regular Member


Date Joined Nov 2009
Total Posts : 85
   Posted 2/23/2010 10:06 PM (GMT -6)   
hey david good luck with the next surgery. whatever you decide im with you all the way, your friend neil by the way i cook breakfast all the time that was her first in months.
50 years
da vinci on 9/28/09
gleeson 3+3
psa before surgery 5.1 oct/09 psa 0.06
cather out on oct 5, back in on oct 5
two more trys for cather out, still in .
cather out nov. 13/09
cystocope nov.13/09 , cather back in , out again on nov 15/o9, was taught to self cath, still pluged with scar tissue but no cather. have to self cath 6 to 8 times a day. scar tissue removed on jan. 11 2010. no cathing and totally dry. 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/23/2010 10:22 PM (GMT -6)   
Neil, thanks. I know you went through a period of what I am dealing with, so I know you know the feeling. Appreciate your concern, one day, this has to be solved, but boy, time just keeps marching by. Next Monday, it will be 5 full months that I have been on these SP catheters.
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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 439
   Posted 2/24/2010 1:02 AM (GMT -6)   
David,
 
I just pray that God instills and blesses your surgeon with great wisdom and skill to guide his hands in a successful procedure to once and for all solve this terrible complication on your path to recovery...   You have endured and suffered enough...
 
God Bless You David!
 
pasayten  (Ray)
After 3-4 years of annual PSA 4-6, biopsy recommended
3/13/2007 - 12 point biopsy - Left 0/6  Right 1/6 Gleason 3+3 T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Final pathology of Gleason 6  T2c Nx Mx, approx 20% of prostate involved, positive margin, but only at 2 focal points.  
6/28/2007 9 weeks incontinance... Overnite, went from 4-6 soaked pads a day from prev 8 weeks to 2 barely wet pads a day.
7/12/2007 11 weeks post-op  Minimal leakage...  one small pad a day
7/18/2007 First Post-Op PSA...  0.01 !!! 
9/10/2007 Pad free and ED at 75% with 100mg Viagra generic
6/26/2008 2nd Post-OP PSA at 14 months...  0.02 
12/2/2008 3rd Post-OP PSA at 20 months...   0.03
10/30/2009 4th Post-OP PSA at 31 months...   0.13 (moved and diff lab)
11/3/2009 Retest at my original lab...  0.11  (followup with Doc sched 11/10)
11/10/2009 Discussion indicated biochemical reccurrence and need for salvage radiation treatment. 
1/21/2010 Another PSA test at 34 months...  0.14
1/26/2010 IMRT Salvage Radiation Treatment started
                  32 sessions for 64 gys total.
2/20/2010 17 down and 15 to go...  No side effects to date except a little
tiredness.  Sometimes feel like a slight sunburn on the inside for a few hours after treatment.
 


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 2/24/2010 8:00 AM (GMT -6)   
I'm confused over the recommendation about consulting with Strum, et al. - aren't they prostate cancer experts? Seems to me that David's problem is not about prostate cancer but about the effects its treatment has had on his body.

David, I know that you are the smart one in not responding to a particular post. I, on the other hand, are not nearly as smart as you.

Ohio, I know your intentions are good and that you are trying to get David to see another point of view. However, your comment re "I will miss you actually because you have served a purpose here in showing what not to do" is not the way to do it. Also, what good would Strum, et al do for David - aren't they experts in the treatment of PCa? I'm curious what you think they would be able to do for him since his problem right now is not the disease but the after effects of its treatments. Regardless, I believe that you're posting with good intentions, albeit rather harsh.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009- 0.1, September 0.3, October back to 0.0, December 0.0. Thank you God!


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 2/24/2010 8:39 AM (GMT -6)   
Hi David,

My own experience says that it is possible to find good surgical talent in a lesser populated area. I went into dealing with this disease rather late and with some potentially serious problems. My outcome has been good and I firmly believe it was because of the skill and patience of my surgeon and his team.

With that thought I support your decision to remain with your current medical team. There is nothing that can beat your own gut feeling about the treatment you are receiving.

Wishing you the best,
Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Five PSA tests undetectable, latest Feb 5 (Whew!)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/24/2010 10:53 AM (GMT -6)   
Sephie, you are so clever, love you for that.

My hang up right now has nothing to do with cancer. The best cancer dr. on the planet would be useless. My issue is one that falls into the hands of a good urologist or a urologist with certain specialties dealing with advanced and chronic striture issues. Most strictures occur in the urethetra, and there is a number of standard procedures and cures. Mine is at the bladder neck junction. A very delicate surgery was done there on me in Oct/2008 with my open surgery. Most of been done well, I virtually had no incontinence, very minimal. But have had this scarring issue from the beginning. My uro/surgeon has been walking a tight rope ever since. He knows how to keep it open, but there is a risk if too much is done, I could be left with perm. and major incontinence. So he is careful in his procedures. What is a shame is how fast I can scar close. This last time, barely a month. He said that would normally occur over a period of 6 months to a year. Then after I had all the trouble with radiation, it further damaged an already delicate area. The radiation people got to walk away from the problem, as the radiation was finished, and I get turned back to my urologist, who's handy work inside me has now been blurred and messed up by the radiation.

As far as Ohio State goes, thanks for your remark to him. I wish our moderators would take care of that issue not just for me, but for the good of the group. There's always that one apple. I am too tired and sore and concerned about my future, to take the bait any more. So I simply aren't replying back. It's non-productive, helps no one here at the group. But I appreciate you caring enough to try.

Thanks

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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/24/2010 10:59 AM (GMT -6)   
Thank you Bob and Ray
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% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days

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