David-- repeating my suggestion

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/18/2010 5:15 PM (GMT -6)   
David:
 
I know you are going to get upset and might want to bite my head off. But, at worst, consider this message based on ignorance as I am not in your skin. However, the reality is that this message is based on a deep concern for a fellow PCer, one that I've gotten to know on this HW Board and I care  deeply about.
 
Again, although I am greatly dismayed to hear of your constant suffering, I also greatly appreciate your postings. In fact, the honesty on this entire forum is unequaled anywhere. I've appreciated your wonderful support more than words can say and more than you'll ever know. It is in this spirit that I write this. I was not going to repeat my suggestion, but I would be remiss not to, at least in the light of everything that has transpired.
 
I keep reading your praise about your great doctors. Indeed, it sounds like they are fine people, the best -- in that regard.
 
But there is this little gnawing at my gut that says maybe they are not the best doctors. Maybe not even close. Personally, I would have gone elsewhere long ago. Every time this is mentioned to you, you point out that all this is due to the radiation damage and nothing can be done (in terms of a procedure) to fix matters until/unless everything heals.
 
Now, my gut feeling is that you are PROBABLY correct. But, maybe not. I could believe it more if you said that "I personally consulted with Dr. XXXX, at XXXX, one of the top centers, who is a renowned specialist in my problem, and he/she said that nothing can be done right now until/unless healing takes place."
 
David, at LEAST write a letter to Hopkins, Mayo, Cleveland Clinic, Umich., etc. detailing your situation/history. Try and seek out someone with expertise in that area. Surely there must be someone skilled in dealing with urological/bladder problems due to radiation. Maybe not. But, speaking quite frankly, merely saying that your doctor consulted with some other doctor just doesn't cut it anymore. There comes a point when you have to say that this present situation sucks but that you haven't exhausted consultation possibilities.
 
Again, I am not in your circumstances and it is easy for me to run off at the mouth. But, you write well, so what do you have to lose?
 
At least consider this suggestion
 
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 was about 75 (way above the 35 threshold). That led to:

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.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 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. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 5/18/2010 5:39 PM (GMT -6)   
I have thought the same thing for a while but my lack of eloquence has stopped me from saying what Mel has said so well.
63 yo
V10.46 Dx Feb-09

RRP 5-5-09

No adverse SE

PSA 6-19-09  -0-

PSA 9-21-09  -0-

1 year PSA 5-3-10  -0-



Thriving, not just surviving!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/18/2010 5:42 PM (GMT -6)   
Mel, not insulted or hurt or even angry by your post. You obviously care, and that's worth a lot to me.

My doctor has been in touch with a specialist associated with Duke in NC, and with an advanced surgeon in Atlanta. He has shared most of the particulars with my case with both. There are things that can be done, but even the "experts" say, that until there is substantial healing in the bladder neck area from the radiation, they, or no one else they know, would attempt any further surgeries or procedures. I have said this all along.

If you, or any one else doubts this, I will be happy to notify my uro/surgeon in advance, and give written permission for someone else to speak to him directly. He's an open and honest man, every empathetic and sympathetic to my cause, and would give anyone a straight update with my permission.

My dr's personal preference, is that when the natural healing does take place (whenever that is), that these advanced surgeries or procedures won't be needed. He's hoping the worse I might have to deal with if that day ever happens, is that I may have to deal with a period of incontinence or partial incontinence after being on the SP cath for so many months.

The trouble with any of the advance solutions, is that they are major, risky, and may give me a different set of problems to deal with.

Appreciate your input on me, as well you support and help to all the other brothers/sisters here.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/18/2010 5:54 PM (GMT -6)   

David:

 

I guess I am just suggesting that YOU get to seek out and consult with the best experts.

Thanks for not getting upset-- this has to be so very frustrating!

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 was about 75 (way above the 35 threshold). That led to:

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.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 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. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/18/2010 7:34 PM (GMT -6)   
We talk a lot about second and third opinions. Many times it just confirms what the first or second opinion.

David, none of us can truly relate to what has gone on in your world. Yes many of us have had catheters, but nothing, and I repeat nothing to the extent you have.

But the misery so many of us had for that week or two absolutely makes us cringe every time we resd your posts.

I must believe you are not the only patient in the country who has had these problems, and somewhere, someone has had an approach that is different than the current approach. I may be wrong, but like Mel and many others, I think for your own sakem you ought to hear it from an expert in the field that your current approach is the correct one.

I truly wish you the best. I too would urge you to seek out another look at your situation.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 5/18/2010 8:22 PM (GMT -6)   

David, as you know, I agree with the others on this thread.  For the life of me I just can't understand why you don't find an expert and go see him or her personally?  Even if there is a 1% chance of alleviating the he** you are going through isn't it worth trying?

Respectully,

Tudpock (Jim)


Age 62, Gleason 3 + 4 = 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 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6053
   Posted 5/18/2010 8:54 PM (GMT -6)   
You know at some point caring about someone is trumped by giving the individual, the right to make his own choices. David is not stupid, nor is he a masochist. There has been a constant inuendo, that be cause David is doing what we all suggest, being an informed patient and taking charge of his team, that if he doesn't do as we think he should, he might possibly unconciously or not be the archetect of this post/ op complication. He is dealing with the hand he has in the way he wants to. If the posts are to graphic, I feel this is exactly the point David is making by " sharing ' this with all. Its happening and he is documenting it. His medical team is not stupid, they are reaching out to others in the field. You know you can always find a 2nd or a 3rd opinion till you hear what you want. Talk about a 2nd opinion, just read a post where 4+4 and a confined path report with all negatives and a post op of 0.0 is already doing adjuvant rad. Wheres the caring there?
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " read it in Bartlet's book of quotation years ago stuck with me, can't remember who said it.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/18/2010 9:10 PM (GMT -6)   
If any of the posts here implied that David is stupid, or his medical team is stupid, then I have certainly misread all of them, and perhaps there is implication that my own post on this subject makes some of that implication, for which I would apologize if there was any inference to that effect.

If there is inference that 2nd or 3rd opinions are useless, because we are just looking to find what we want to hear, then there is a lot of misguided information on this forum.

All we can do is show our concern and caring for David, and he is certainly the final say on whatever he and his wife decide.
Goodlife
 
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 .
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)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 5/18/2010 9:48 PM (GMT -6)   
I have learned so much about the human spirit and caring that comes from reaching out to others here at Healingwell - it has helped restore my faith in humanity, even though we do see things differently, and follow a variety of paths of patience, determination and devotion in our lives...

My Mother suffered radiation burns from her sarcoma cancer surgery (on her back) - and my Uncle ( Mom's brother) suffered severe radiation burns from his bladder cancer surgery. So I am personally aware of the physical and emotional suffering that occurs.

As David has said in numerous postings - nothing can be done until the area that was burned has healed - that takes time for the body to work out at a cellular level as to how to restore this burned area back to where it was before... there is probably a more eloquent of putting it but this is how my brain works....

No amount of consultation or expertise can speed up this process - especially with fine thin tissue like the bladder neck and urethra ...

It would be wonderful to have a pepto-bismol approach to radiation burns and cover the damaged tissue to help it heal...or .. to have a roto-router approach to removing radiated cells so the good ones can recover and flush away the bad so there were no more blockages...

When David writes about the blockage and the pain he feels, I think of my fish pond out back -...when things are not balanced, the algae builds up and the pond is unhealthy - I apply the chemicals ( safe for the fish and environment) to help bring balance to this little fragile eco-system that gives me so much pleasure ... and part of that results is the algae shluffing off the sides of the pond and getting caught in the pump - and after a few days of cleaning the pump - the water, fish and pond are in balance again....

I wish I could offer a similar solution for David's journey - all I can give him is my understanding and support in all that he does.

sincere hugs
BRONSON
.................
Age: 54 - gay - with common-law spouse of 13 years, Steve - 60
PSA: 04/2007- 1.68 - 08/2009 - 3.46 - 10/2009 - 3.86
Confirmation of Prostate Cancer: October 16, 2009 - 6 of 12 cancerous samples , Gleason 7 (4+3)
Doctor: Dr. Mohamed Elharram -Urologist / Surgeon - Peterborough Regional Health Centre
Radical Prostatectomy Operation: November 18, 2009 , home - November 21, 2009
Post Surgery Biopsy: pT3a- gleason 7 - extraprostatic extension - perineural invasion - prostate weight - 34.1gm -
ED Prescription: Jan 8/2010 - started daily 5mg cialis - girth back to normal -but not much length - will go for trimix in April when I see doc
Incontinence: Feb 2010- 3-5 pads/1-2 clothes changes/day- March 3, 2010 - week 14 after surgery -finally seeing improvement - March 29- incontinence better - 1-2 pads a day - one pad at night
location: Peteborough, Ontario, Canada
Post Surgery-PSA: - April 8, 2010 - 0.05 - I am in the ZERO CLUB - hooorah!
Next PSA - October 8, 2010 - TBA -
............


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/18/2010 10:10 PM (GMT -6)   
goodlife, let me set the record straight, I do not feel that anyone here has either said or implied that I am stupid. Not everything in the medical world can be solved by additional testing or collecting opinions. What I am dealing with has extremely limited solutions, even before the radiation did further damage. one thing that my uro/surgeon was shocked to learn when he reached out on my behalf, was just how long it can take for radiation damage to heal. he thought, like i did, and many here probably do, that perhaps 1-6 months tops, he learned from the experts that it might take a year or even longer. what is worse than what i am going through - I will answer - to jump into an advanced surgical solution before the healing is done - and end up in a worse solution - my dr. is well aware, that some of these obscure advanced solutions could cause major quality of life changes - far worse than what i am dealing with, so caution is the key word.

logo, i liked the tone of your response, i feel like you got the general ideal of my current situation. appreciate you looking at this from a different angle and approach.

bronson - "As David has said in numerous postings - nothing can be done until the area that was burned has healed - that takes time for the body to work out at a cellular level as to how to restore this burned area back to where it was before... there is probably a more eloquent of putting it but this is how my brain works....

No amount of consultation or expertise can speed up this process - especially with fine thin tissue like the bladder neck and urethra ... "

Quoting your words here, that was a very good way of saying it. Better than I could say myself. We are talking about an area that had already undergone severity during my original open surgery, then add 5 corrective surgeries, endless over-scarring, and then 2 months of intense radaition.

If anything, and I am not a blame person by nature, I always got paid to fix things - not afix blame, but starting to think that the radiation clinic didn't listen close enough to me when I was undergoing SRT. My uro/surgeon did communicate on my behalf several times what I was reporting to him during those 39 treatments, and they kept assuring him that there shouldn't be burning, let alone collateral damage that I have suffered. My own uro/surgeon was fearful for me when I underwent the radiation, because he was aware of my past issues with radiation. But, its not his filed or expertise, but again, he did try to speak on my behalf to my radiation oncologist.

________________________

Had to do another quick irragation this evening, felt a lot of bladder pain building up, so it was done just to be on the safe side, so that I can get to sleep tonight. If I have any issue in the morning, absolutely will go to my uro's local office, and they may want to go ahead and change out the cath instead of making me wait till Monday. They almost did that last Friday, but my uro was afraid it would be too painful with all the UTI enflaming everything. Still on the antibiotics for now.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/18/2010 10:44 PM (GMT -6)   
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
nothing can be done until the area that was burned has healed - that takes time for the body to work out at a cellular level as to how to restore this burned area back to where it was before... there is probably a more eloquent of putting it but this is how my brain works....no
amount of consultation or expertise can speed up this process - especially with fine thin tissue like the bladder neck and urethra ... "
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

As I said, this may well be true. But how do you know UNLESS you personally consult with a true expert (who might well confirm this and also confirm that it is in fact the radiation damage that is responsible).?

Anyway, it's unfortunate that anyone would read this thread and interpret it as an attempt to call someone stupid. Nothing could be further from the truth. Obviously, we all respect and realize that folks make their own choices. I certainly did in my choice of treatment. But I sure appreciated input from so many people. We are all trying to be helpful.

'nuff said by me.

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 was about 75 (way above the 35 threshold). That led to:

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.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 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. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6053
   Posted 5/19/2010 12:43 AM (GMT -6)   
Its not the specific thread. David has the dubious honor of bringing to the forum information of his battle with Pca that is tough and hard to hear, but there it is. We can only, as observers, take so much bad news. I feel that when that point ,comes. out of caring and love WE try to change the situation. Its a fine line to ride, twix caring and interfering. I said David is not stupid. When the thread, s title, is basically, in the vein i referred to above, says , look, listen to me on this! When I say David is not stupid, I,m saying you dont have to tell him twice and when you do there is an implication, intended or not.
age 66 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of W Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " read it in Bartlet's book of quotation years ago stuck with me, can't remember who said it.


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4848
   Posted 5/19/2010 7:18 AM (GMT -6)   

Second Opinions can suck...If its way off from the first - you have to get a third opinion...What's that ol saying about Opinions are like Ears...Everyone has two smhair

Stickin with the one who brung ya has it merits.


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 5/19/2010 8:27 AM (GMT -6)   
Bronson said everything quite well so I will not or cant add anymore than that. But all of us on this forum consider David to be a brother and one that offers his support at all times.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5 on 11/28/10
Starting IMRT on 1/18/10, Completed 39 tx at 70 gys on 3/12/10
6 week Post IMRT PSA .44 a drop from .5 but maybe more
Great family and friends
Michael


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/19/2010 8:39 AM (GMT -6)   
My alternative is to cease posting about my own battle(s), and just stick around and try to help others instead. Its my natural writing style to write in detail, almost from a documetary point of view. Perhaps that is why I write novels, etc. I assumed the details were helping, if they are hurting or upsetting people more than they help, again, might be best if I cease, and just give sweet short summaries instead.
_______________________

Wednesday morning update: Flowed fine all night without a problem, had to empty bag around 3 AM, or it would have been an overflow. Seems to go from one extreme to the other. Hope it stays this way. Wife going to pick up some free irragation supplies from work, so I will have plenty at home before she leaves on her trip. Been stuck home for 2 days, hoping later this morning, to get out and at least to a few local errands.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 5/19/2010 9:06 AM (GMT -6)   
David - keep posting.
As you well know, you have my support, and you, as the rest of us, have to make decisions. None of us, who are not medical specialists, know enough to insist that another change a decision.

It seems trite, but another well-intentioned "hang in there".

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/19/2010 9:17 AM (GMT -6)   
142,

will definitely continue the "hang in there" mode on my part. any alternative to this point is worse, and the logical side of my brain knows that when i start to feel irrational about things.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 5/19/2010 9:20 AM (GMT -6)   
Unfortunately I believe that giving my advice would be counter-productive.  Thank you, compiler, jacketch, goodlife, and Tudpock.
 
Purgatory, I read much of what you write, even when it makes me more than uncomfortable.  You have an important story to tell; don't stop posting.
 
Your current situation breaks my heart.  cry  
 
Zen9

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/19/2010 9:28 AM (GMT -6)   

David:

 

Good luck. You have my support whatever you do and I hope you know that. Perhaps posting the suggestion twice was once too much. I won't post it a third time. We all have to make our own decisions and fight this malady as best we can.

 

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 was about 75 (way above the 35 threshold). That led to:

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.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 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. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/19/2010 9:36 AM (GMT -6)   
Zen, thanks.

I long for the day, when I have nothing newsworthy to report here as far as my own journey goes. These lingering and troublesome months do my head no good, nor my body. Every day lately is a struggle and a battle in itself. I spend long hours in the night, having trouble sleeping despite being on long term sleep meds. Sometimes I wish I could sleep for 12 hours out of the day, less time being awake and thinking about reality. As it is, I probably average 4-5 hours of sleep a night, and that is usually broken into segments.

There has to be an end to this, one way or the other. My mind refuses to accept that it will be like this forever. So meanwhile, I literally live my life one day and night at the time. Things that could cheer me up some, that aren't medical related: To see my VA disability case get approved, still out there undecided, and/or finally get a professional job again. Unless you have spent a long period of unemployment in your life, its hard to explain to someone fortunate enough to be working how humiliating and degrading it can be to be out of work against your will.

Somedays, the only good news I hear about, is when a fellow brother gets a zero, or someone's treatment goes well, or when I see how HW reaches out to a new and scared brother or sister. That always makes me happy, no matter how I am feeling.

I just want to be David again, not the weirdo with the endless catheter story. I want to be well enough not to have to plan a day around when I can or can't take pain meds, want to be able to take a hot tub bath if I feel like it, or step back into our Spa for the first time since last September, or even sit on the brand new bicycle I was given last August. Don't feel like I am asking a lot, just minimal requests that most of the guys here have, despite undergoing PC treatment(s). Sorry just some rambling thoughts.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 5/19/2010 10:24 AM (GMT -6)   

David:

That was a great, inciteful (oopppsss... I mean insightful) post.

While your case is extreme, I have those same emotions. I wish I could go back to being Mel again. The guy existing before that fateful routine physical exam where suddenly my PSA went from 2.97 to 4.01. It has truly been a nightmare since then. It is in a sense a certain loss of innocence due to a confrontation with my own mortality. No fun.

 

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 was about 75 (way above the 35 threshold). That led to:

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.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 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. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week).

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.


pattersson
Regular Member


Date Joined Apr 2010
Total Posts : 97
   Posted 5/19/2010 10:51 AM (GMT -6)   
I think that the posts of purgatory are very important for all undergoing radiation therapy or suffering from its effects. I sure hope you continue with the posts, and don't mind the over enthusiastic helpers like me too much.

I surf a lot in the net about prostate cancer related stuff (for 'fun'), and have been looking into this 'hyperbaric oxygen therapy' idea, partly also for personal interest as I might have to undergo salavation radiation at some point.The american cancer society has the following to say about it:

'Hyperbaric oxygen therapy is used in conventional treatment for decompression sickness; severe carbon monoxide poisoning; certain kinds of wounds, injuries, and skin infections; delayed radiation injury; and certain bone or brain infections. Research has shown HBOT is effective when used in addition to conventional treatment for the prevention and treatment of osteoradionecrosis, a term for delayed bone damage caused by radiation therapy. There is also some evidence suggesting HBOT may be helpful as an additional treatment for soft tissue injury caused by radiation.'

I have noticed that many university hospitals in the US offer this treatment, but I do not know how much it costs. There is a 'Hyperbaric Therapy USA' that mentions this treatment specifically in relation to prostate cancer radiation injury (tel (610) 355-1747). In my country(FI), the local 'hot shot' cancer clinic offers it as a treatment to post radiation problems. cool

It may be that this is not suitable for Purgatory at all but as a point of general interest does anyone here have experience of this kind of treatment for post-radiation problems?
Radical prostactemy 10/2006 @42, PSA 3.9, Gleason 3+4
PSA <0.2 2006-2009
PSA 0.14 01/2010
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/19/2010 12:51 PM (GMT -6)   
Sounds interesting, not sure its available in my region, but will check it out anyway. A good lead is still a good lead.
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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 4/23 put in


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 5/19/2010 1:26 PM (GMT -6)   
FYI:

http://www.ncbi.nlm.nih.gov/pubmed/16753375
http://www.ncbi.nlm.nih.gov/pubmed/17138131
http://journals.lww.com/amjclinicaloncology/Abstract/2006/12000/Treatment_of_Refractory_Radiation_Induced.12.aspx
http://clinicaltrials.gov/ct2/show/NCT01087268

And in your area of the country:

http://hyperbaric.mc.duke.edu/


Best wishes,
Medved
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

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