Another reason not to jump on HT when its not really needed

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Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 1/1/2011 11:28 AM (GMT -6)   
This article concerns me, if true, and I have no way of really knowing, sure seems to indicate that a lot of men jump on HT way too soon in their PC progression, and greatly increase other medical issues.
 

Jerry L.
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Date Joined Feb 2010
Total Posts : 3057
   Posted 1/1/2011 1:03 PM (GMT -6)   
Thanks for the info.

Now if I only knew - when should I go on HT...
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 1/1/2011 1:05 PM (GMT -6)   
I'm so glad you posted that link. It gives us a completely different way of looking at hormone therapy, which would probably have been our next step if radiation therapy 'fails'. Now if they could just figure out which cases are going to progress quickly and which will not...

Juliet

Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 1/1/2011 1:30 PM (GMT -6)   
Jerry, when to go off can be as complicated as when to go on. When I met with my local radiation oncologists and my long term medical oncologist, they couldn't even agree among themselves (and all in the same practice) about when to start HT, and whether is is really effective or not. Makes its hard to know what to do as a lay-patient.

Juliet, that is the twenty-million dollar question with PC, not realy knowing which variant of aggressiveness one really has.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Fairwind
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Date Joined Jul 2010
Total Posts : 3748
   Posted 1/1/2011 2:04 PM (GMT -6)   
""One third of men over 65 who don't have surgery or radiation get this therapy," she said. "Yet its effects have never been studied in a controlled trial."

My BS alarm just went off.....Could it be that this one third were diagnosed with metastatic disease and HT was their ONLY choice???

I think it's effects have indeed been studied..Their PSA often drops to undetectable and their symptoms are completely relieved for long periods. The race is on...Will it be PC, heart attack or stroke that lays them to rest?? The heart attack and stroke risk can be mitigated. Not so with the PC risk...

ADT was the FIRST effective medical treatment for PC... It's STILL the only effective treatment when surgery or radiation fail. Now they want to limit or abandon it because of the side-effects ?

My U-doc billed Medicare $2918 for having his nurse give me an Eligard shot..Do you think they are going to give THAT up???
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT NOW

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/1/2011 2:23 PM (GMT -6)   
fairwind,

i dont know anything about the reputation of this Prostate Cancer Foundation group, seems legit enough. Perhaps Tony, our moderator would have some background on the group and the specific report.

i may be wrong in my thinking, but from the medical professionals i have spoken with on the subject of HT, sure make the whole subject an "iffy" one at best, with no consensus of opinion. i still see it as an expensive "masking" tool. it's not really reducing any cancer cell or eliminating them, its just temporarily lowering the PSA number, thus buying time.

there was a recent thread here, where it was being argued that some men should be on HT long before there's any psa evidence of reccurance, that rubs me the wrong way. but again, this is something i am trying to learn about, have no first hand knowledge or experience with it.

i am just a skeptic in general, having been through all i have been through the past 15 years or so. not a question of being negative, more a question of being a realist in my opinion.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Gordy
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Date Joined Jun 2005
Total Posts : 528
   Posted 1/1/2011 2:45 PM (GMT -6)   
Who's going to tell Strum?

Piano
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Date Joined Apr 2008
Total Posts : 847
   Posted 1/1/2011 3:14 PM (GMT -6)   
I don't see anything new in this report -- we knew that heart attack and diabetes were more likely already. But I wonder whether the root cause of this is overweight, which is also a side effect of HT. Do those who control their weight while on long term HT also have these increased risks?

We can't pin the risk factors on the missing testosterone -- women go through life with very little. According to statistics I have just looked up,
www.americanheart.org/downloadable/heart 1236204012112INTL.pdf
women's incidence of heart problems and diabetes is a little less than for men. And (same statistics) generally they are a little less overweight than men.

My less than scientific conclusion is that weight gain is a big factor in HT side effects. So if we need to go on to HT, be aware of the side effects and take steps to control them.

John T
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Date Joined Nov 2008
Total Posts : 4229
   Posted 1/1/2011 6:18 PM (GMT -6)   
That is one point of view. If you listen to Strum, Myers and Scholz, the doctors that have used HT for years you get another point of view. In every aspect of oncology that we know of, there is not one case that starting chemo sooner rather than later is recommended. Strum is pretty insistant that the earlier you begin HT the better it works because of the low tumor burden and the PC cells have not yet had a chance to mutate.
Also most of the heart related risks are associated with the weight gain that is common with HT. Every major oncologist also suggest a health diet and regular excercise program to keep the weight off. Patients that have no weight gain don't have the cardiac risks.
There is one study that shows an increased risk of heart attacks, D"Amico, Journal of Urology June 07 and four others that show no risk or less risk: Fritz Schroeder, European Urology Sept 08, Jason Efstathiou, Journal of Clinical Oncology, Jan 09, Urs Studer, Journal of Clinical Oncology April 2006, and Payam Hakimian, British Journal of Urology International, August 2008.
It is also well known that many doctors perscribe HT to older patients and patients with known cardiac problems that preclude surgery and this can contribute to a built in bias.
If I had to bet my life on it I would go with Strum, Myers and Scholz's view.

David, The idea of HT only masking psa is totally wrong. There have been thousands of cases where imaging and follow up biopsies after HT have shown major shrinkage in tumors. I was instructed that I could not have HT before I had my Combidex scan because within two weeks of HT any lymph node tumors would be undectable on the scan because HT is so effective in shrinking tumors. There have been many postings on this board of patients that have had identifiable masses or bone leisons that have completely disappeared after a couple of months on HT. Andrew, Ohio State, had a mass on his bladder that led to total constriction. Within 2 months on casodex the mass completely disappeared and his catheter fell out on its own. He was given 6 months to live by doctors and a year later is doing fine with undectable psa and no detectable masses by just taking Casodex.

JohnT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Fairwind
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Date Joined Jul 2010
Total Posts : 3748
   Posted 1/1/2011 7:01 PM (GMT -6)   
Dave, I REALLY resisted the combined HT-RT protocol...Like you, I figured the R-docs were making themselves look good by having their patients do HT also..My R-doc just shook his head and said: "It's your life, do what you want, but I would not be doing this to you if I felt it offered little or no benefit.." Still unconvinced, I went to a University expert in Prostate cancer treatment, a surgeon, and he confirmed that with high risk patients, the Trifecta, surgery, radiation and hormones would give the best chance of long-term survival. He simply said that several studies had proven that when HT was combined with RT, the OUTCOME was almost always better than if radiation was used alone...So after 3 different doctors told me the same thing, I caved in and succumbed to the Eligard (Lupron) shot...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT NOW

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/1/2011 7:04 PM (GMT -6)   
John, with respect, there are always the rare exceptions to the rules, I acknowledge that. Its very much on a case by case basis in my opinion. We have men here with aggressive acting Gleason 7s, in unstable condition with fast BCR, and men that are solid 8/9s that are holding their own after years. When we are talking about a verified Gleason 6 environment, I completely agree on most of the current thinking.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 1/1/2011 8:03 PM (GMT -6)   
This is difficult-- more and more doubt.
The article seems to imply that one should hold off on HT, even with a recurrence after SRT.
 
The article suggests waiting for symptoms.
 
The other school -- the predominant school of experts methinks -- suggests that this is the wrong approach and we should hit things earlier with HT before things get out of control.
 
I might have to make that kind of decision at some point.
 
David:: I have not opened your .txt file. I will AFTER I get the PSA result. That will happpen Wednesday or Thursday
 
Mel

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 1/1/2011 8:18 PM (GMT -6)   
I wonder if the risk could be mitigated with, not just lifestyle changes to prevent weight gain, but medications aimed at reducing the likelihood of stroke and heart attack. Of course, many older men take those already...

Juliet

F8
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Date Joined Feb 2010
Total Posts : 3804
   Posted 1/1/2011 8:36 PM (GMT -6)   
"I wonder if the risk could be mitigated..."
 
my doc says exercise.  i have weight trained for years and i now target about three hours of cardio a week.  i have never quit exercising through treatment.  not even on the days when all i could do was just go through the motions.  i still gained 25 pounds.  i bet it would have been 40 pounds if i didn't exercise, not to mention all the muscle mass i would have lost.
 
ed
age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 1/2/2011 3:36 AM (GMT -6)   
David,
The hospital where I had my RT refuses to give HT at the same time as RT as they don't want the HT to mask the effect of the RT, which is yet another indicator that HT does something positive with PCa, the problem is though the negative stuff it does to the rest of your body.

I also question they way the statistics about increased heart/stroke problems are reported. A doubling of risk needs to be quantified in numbers as well as percentages. If the normal risk is 50 guys per thousand and the HT doubles it to 100 guys per thousand that would seem to me to be less of a problem than if the normal risk is 450 guys per thousand and the HT doubles it to 900 per thousand. (The report mentions the actual numbers for diabetes so why not the actual numbers for cardiac stuff and strokes too?)

All I know is that I will have a very long think about ever embarking on HT if RT fails as my family has a history of heart/stroke problems. And I have already had trouble with weight gain after surgery and RT, suggesting I can't exercise enough etc.

This is another reminder of the importance of dealing with doc who are specialists in prostate cancer, which nearly always runs to a different timescale than other cancers. A doc who sees all sorts of cancer patients may be too used to the idea that his patients don't live for that long after diagnosis and that for them a treatment that improves things for a few months may be the best that can be done for them, whereas guys with prostate cancer ae looking for treatments that improve things for many years.
It almost makes you question those urologists who start off by saying "you've got more chance of dying from a heart attack with the PCa inside tou than from the PCa itself" - what if the heart attacks that such guys die from are caused by the treatment for the PCa!!!


Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/2/2011 9:46 AM (GMT -6)   
A lot to think about their Alf. I still see too many issues and potenial dangers going down the HT path, at least for myself.
If I knew, and its just a guess, that I would not be alive in 10 years regardless of cause, no way I would want to do HT, have no interest at age 58 to be chemically or physically castrated, no desire to be sexless, or to gain a buch of weight and experience hot flashes, etc. Not my idea of quality of life. And I am only referring to myself, no other man's decisions here.

I would rather remain whom I am, as I am now (for good or for bad), and try to be well enough to simply be me. Just like I knew this SRT was going to do a number on me, and it did, as sensitive as I am to meds in general, I know that I would have the full effects of side effects from using them, just my gut feeling.

The board here, has to know by now, there is no one fit for all, at any stage in our journey. Each of us are faced with choices, sometimes horrid choices, and we have to make them on a combination of faith in our own judgement and faith in our medical staffs. Not easy, not always right, but that's the way it works.


David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/2/2011 9:53 AM (GMT -6)   
Mel,these is from your post:

"The other school -- the predominant school of experts methinks -- suggests that this is the wrong approach and we should hit things earlier with HT before things get out of control".

Me thinks, that sometimes that "let's throw everything at it" approach means the doctor(s) in question don't really know the best approach to use, so they use up al the patient's cards at one time and hope for a win. I don't agree with that approach.

The only rad oncol I met with that was remotely suggesting HT with SRT, was real unsure of himself when questioned hard, in the end, he had to admit to me, that he didn't know if I really needed it (HT), and he didn't know if it would actually help (HT).

Not very hope inspiring there coming from a doctor that had mostly dealt with PC guys in his practice. So his ending answers sealed the deal for me, no HT with SRT

The next 2 rad oncol simply were in agreement, no HT before SRT, they needed to see how the SRT work and its effectivness as a standalone secondary and possible curative means. They didnt want anything else in the mix.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/2/2011 10:01 AM (GMT -6)   
JohnT, you said:

"David, The idea of HT only masking psa is totally wrong"

Again I respect your knowledge base, but why have other doctors told me that it is an expensive masking effect, doctors I have seen in person, including a very renkowned medical oncologist of whom I have had had a 12 plus year experience with?

Perhaps the statement should be modified, that HT does other things other than masking. I would be willing to acknowledge that.

Your PC journey - has been really bizzare from the onset, very unique story, one that got you into all the knowledge you have aquired. Ohio State, same thing, his case was/is so far out of the normal PC journey, and I am glad he is still holding his own after these years. Special cases - special circumstances.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/2/2011 11:28 AM (GMT -6)   
Welcome to the Twilight Zone issues on PCa, plenty of exceptions, choices, non-definables, unknowns, even includes bias, agendas, errors and good and bad judgements. There is no one set protocol or one set choice, unless you hire the Soup Naz_ type guy. (which they should know there is many ways to treat PCa).

I talked to Andrew the other night, doing well and has to pinch himself that his journey could have ended up way different with a hack n slash doc that was going to reinvent his parts surgically. He fired a couple of docs(in Ohio) with heavy agendas on his well being (much to his own good), Dr. Fred Lee gave him a better assessment of his case with PCa. The casodex and his other drug (older but like proscar) have done very well for him, my onco-doc in Michigan cared enough to see that he got on casodex and such immediately, the other docs let his psa get to over 120 or so...without any drug protocols. My onco-doc told Andrew that his catheter would probably fall out on its own after a little while, even though it had been in him (the same one) for over 3 months as PCa grew around it and wasn't coming in and out easily. Well it did fall out and he had been peeing normally ever since and totally elated with that and his low psa level that stabilized so well, he has been off the drug many months now and getting a psa test in 1-2 weeks and blood work too. His story is unique and shows why one should question everything and get further opinions. 

Post Edited (zufus) : 1/2/2011 10:31:05 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/2/2011 6:26 PM (GMT -6)   
zufus,

i mostly agree with all of your post, but more of a reason while fellow posters shouldn't be so dogmatic about what they think works best. there are no rules in this game. everyone should be open minded at all times. and doctors should be grilled when needed, and the patient shouldnt walk away without a satisfactory answer to their questions.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 1/2/2011 5:07 PM (GMT -6)   
David,
I was surprised that castration had a higher risk factor (40%) than ADT (27%)
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/2/2011 5:11 PM (GMT -6)   
Ed, I find that surprising too. The things we are forced to learn sometimes.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10
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