2 Year PSA Results - Pretty much expected

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LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/6/2010 4:05 PM (GMT -6)   
Got the 2 year test results today.  0.32 (actually 0.318...they switched to 3rd gen assays)
 
Pretty much expected amount of increase from the 0.19 last April since my surgery in September 2008.  Good news if you want to call it good news is the slow doubling time.  And as such I will continue on surveillance for the time being.
 
I know most folks are usually very concerned with post surgery test results and often go the salvage route as soon as the psa rises above 0.1  
But I have elected to monitor mine and allow as much time to pass as possible before going into SRT.  Reasons are basic...why begin treatment when statistics show that I will fair just as well down the road vs. treating right away.  You got to understand that the amount of cancer with a PSA of .32 is extremely small...probably would occupy the same area as a pin head. 
 
The only reason I point this out, is that many of the good folks here recommend to the newly diagnosed men with cancers from a biopsy result of 1 or 2 cores out of 12, PSA less than 10.0 and less than 10% to go the Active Surveillance route and not treat the cancer, yet will be the first ones to recommend salvage therapy on rising psa after surgery. 
 
The bigger picture needs to be looked at and not just the psa results.  PSA Slope, velocity, doubling time, gleason scores and surgical status are the bigger factors when determining who is at high or intermediate risk for cancer progression.  NOT the small amount of rising PSA by itself.
 
My belief (and of my doctor) those that have or will have a rising PSA after surgery (30% normally will), understand the kinetics of your particular cancer before jumping the gun for additional therapy before it is needed.  Your quality of life could depend it.
 
Next test will be in three months.  My uro and I will take another look at it then.
 
 

goodlife
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Date Joined May 2009
Total Posts : 2692
   Posted 10/6/2010 4:16 PM (GMT -6)   
LV,

I like your logic, and resolve.

It does fly in the face of conventional wisdom. I have seen studies that imply that earlier radiation gives better results down the road.

Do you have some links that back up your beliefs ?

My QOL is all shot to heck anyway, so that argument is not a big one.

I am curious as to the bqsis for your decsions.

Good luck.
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
15 month PSA <.01

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/6/2010 4:32 PM (GMT -6)   
Goodlife,

I don't have the links right now...but I am sure you have seen plenty of articles where long doubling times pose no immediate risk either before surgery or after surgery. Many posters here probably have done way more research than I have and may post their sources. Your statement about earlier radiation was accurate while the PSA is low, but what was meant by low? Everything I read is below 0.6 The problem is...treating at 0.1 or at 0.6 has the same results in the long run. So what is the rush to do it earlier? The only reason to start earlier than 0.6 would be the kinetics of the disease, not the PSA level. That would be those in the high risk...doubling times less than 3 months, node involvement, high gleason sum etc. If the cancer is in the lymph nodes, then the cancer has a pathway to the rest of the body through the lymph system. In my case it was cancer left behind at surgery (positive margin). So the cancer is going to have a hard time moving beyond the local area to the lymph nodes or elsewhere without a significant amount of PSA. Thus no treatment required at this low level of PSA.

Did I answer your question okay?
You are beating back cancer, so hold your head up with dignity

Les

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goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 10/6/2010 4:57 PM (GMT -6)   
LV,

The study that the oncologist from U of M cited didn't reference PSA levels at all, merely time from surgery. Their study indicated that is radiation was begun within 4 months of surgery, curative rates were increased around 15 %.

If the PC is in the local bed, be it from a positive margin, or a whatever, it really can go anywhere from there. Actually, it may go in search of testosterone which it likes to eat. So my way of thinking is that the sooner I can kill the little sucker while he is close by, my odds of a a cure are increased by some percent.

As a Gleason 9 I am very attuned to this discussion. That is why I am curious. I do not want to do radiation, but I am prepared to move quickly if I see any movement on PSA.

I have talked to another poster on here who's URO believes that HT may be a good first step in these situations also. Knock it down, maybe even kill it before it goes off to richer pastures in search of food.

I do believe that there is little hard proof that any approach is significantly better than another. The nomograms it seems would be asking a lot more questions if there was an ideal approach.
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
15 month PSA <.01

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/6/2010 5:09 PM (GMT -6)   
Goodlife...with a gleason 9 you are certainly in the very high risk catagory. I am no where near being high risk, so what I am doing definitely wouldn't work in your case. You and I are not even on the same scale. In your case, I agree, you need to be as agressive as possible, including HT if necessary to keep your cancer in remission. Gleason 9 cancers don't produce as much PSA, so any detectable amounts of PSA would indicate a larger quantity of cancer is present and could be very dangerous if left untreated.
You are beating back cancer, so hold your head up with dignity

Les

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Piano
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Date Joined Apr 2008
Total Posts : 847
   Posted 10/6/2010 5:26 PM (GMT -6)   
Les, I am in a similar situation to you, but higher Gleason and negative margins. My next PSA is about a week away and I am due to see the my uro later this month.

Do I have PCa? Almost certainly. Where is it? Don't know. If I knew it was still in the prostate bed, I'd opt for SRT with a good chance of killing it -- and maybe a few other things as well cry But if not in the prostate bed, SRT is a pointless exercise, with the potential to do a lot of harm.

So it's a waiting game. Enjoy each day as it comes. We will all die of something someday. For me it may be sooner rather than later, (bummer), but in the long run, we will all be equally dead. Today I am still alive, with no symptoms, so I will make the most of it.
Pre-op:
Age 63 at diagnosis, now 65.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve-sparing open surgery on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
25-month: 0.2 (yes, bummer)
27-month: 0.2 (not up; glad about that)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. At 18 months, "graduated" to just the pump.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/6/2010 5:35 PM (GMT -6)   
Piano,

It's the negative margins in your case as well as the higher gleason sum that puts you in the higher risk unfortunately. I would imagine that you will have to do something this next go around. Waiting in your case is very tricky. If you had positive margins I would be inclined to say it is local...but a negative margin makes it a tough call.

Best of luck to you.
You are beating back cancer, so hold your head up with dignity

Les

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John T
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Date Joined Nov 2008
Total Posts : 4268
   Posted 10/6/2010 5:37 PM (GMT -6)   
Les,
I think what matters most is your gleson grade. A G6 or a 3+4 G7 may warrent waiting, but if a solid G8 or 9 the earlier the better. Doubling time is a good indicator of how fast it is growing.
JT
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.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 10/6/2010 5:43 PM (GMT -6)   
OK, I'm lazy, so I had to look up your sig.

If you had a 6, I would be a little more complacent, but a 7 is no slouch either.

Your pathology didn't mention perineural invasion. Is that to assume there was none seen or it wasn't recorded ? This is another pathway to the outside besides a positive margin.

You got me thinking about PSA production of G9 vs G6 or G7. Had not really heard that generaliztion before. Will need to study that. I had a fairly large tumor (28 MM) but the biopsy only found in 2 out of 12 cores. Can't put my finger on % of core . My PSA was 4.2, so don't know if that's proportional or not.

Thanks for the discussion !
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
15 month PSA <.01

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 10/6/2010 6:08 PM (GMT -6)   
I am following the same protocol kinda. My psa jumped to .71 from .19 in three months. I am not going to do anything anytime soon. I feel great, I am running and swimming and enjoying life. When that thing gets up to 3 or 4 I will give it more thought. Until then I am living large. I went through radiation and ADT3 and I want to wait as long as I possibly can before doing that again.
Great post

thanks
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 10/6/2010 6:09 PM (GMT -6)   
LV,
This is a very interesting plan. I will be following your journey closely. One question for you: while you are on this post-op AS, have you changed your diet at all from what it was pre-op? Are there foods you try to eat more now, and foods you avoid?
Age: 63
Gleason grade: 3+4=7, pT2c NX MX
Robotic RP: Sept. 15th, 2009
No lymphatic/vascular invasion, seminal vesicles, margins tumor free.
Pre surgery PSA: 4.1
Post surgery PSA's: .04, .03, .02, .05, .02
ED: Improvement slow but there are positive signs. No incontinent issues.
Surgery: Dr. Jim Hu. Dana-Farber/Brigham and Women's, Boston

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 10/6/2010 6:14 PM (GMT -6)   
LV-TX, your cancer is very likely still localized and therefore you are still eligible for a cure by salvage radiation...The longer you wait, the more time you are giving your G-6 cancer to figure out a way to metastasize..One the other hand, it may NEVER metastasize and therefore may never cause problems worth treating..But it seems to me, with cancer, even PC, the longer you wait, the more aggressive it becomes..Just My Humble Opinion....
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
age 61: 5.2
age 64: 7.5, DRE "Abnormal"
age 65: 8.5, " normal", biopsy, 12 core, negative...
age 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
age 67 4.5 DRE "normal"
age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010, pos margin, one pos vesicle nodes neg

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/6/2010 6:50 PM (GMT -6)   
les,

lot of interesting comments so far. you talk about the small size of the cancern, and basically that is correct, but you cant assume it all located in one small, tight cluster at this point. no way to prove or disprove that point. the psa being produced might be from 5 clusters or 10 or 20, just making numbers up of course. if you have mutiple points of micro-s going on, then each one, with you doubling time could come back to haunt you.

all my sources tell me that you don''t want to go salvage over .50 no matter what, still equally effective at any point below that. between .50 and 1.0, you greatly reduce your odds for it working, and remember, the odds aren't great on a good day.

just something to think about, not being dogmatic about it.

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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 10/6/2010 8:18 PM (GMT -6)   
I would not advise waiting, if one is going to do salvage.

"One of consistent variables associated with PSA relapse-free outcome has been PSA levels prior to salvage RT. Multiple studies examined various PSA cut-off levels and showed that the lower the PSA level at the time of salvage RT, the better the treatment outcome."
Richard Choo (Mayo Clinic)
Salvage Radiotherapy for Patients with PSA Relapse Following Radical Prostatectomy: Issues and Challenges
Cancer Res Treat. 2010 March; 42(1): 1–11
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2848745/?tool=pubmed


"The PSA level before SRT was a highly significant predictor of disease progression, with more favorable outcomes observed at low PSA levels. An estimated 48% of patients who received SRT alone at PSA levels of 0.50 ng/mL or less were free of progression at 6 years, compared with 26% for those treated at higher PSA levels. The ability to provide successful salvage treatment for approximately 50% of patients with "early" SRT is similar to the 52% to 57% relative risk reduction in the rate of PSA progression among high-risk patients randomly assigned to adjuvant radiotherapy versus observation after RP in two recent randomized trials. An important observation in our study is that the 6-year responses for those treated at PSA levels less than 0.50 ng/mL appeared to be durable. This evidence suggests that approximately 50% of patients with recurrent prostate cancer after RP may derive long-term benefit from SRT when it is administered at the earliest signs of recurrence."
Predicting the Outcome of Salvage Radiation Therapy for Recurrent Prostate Cancer After Radical Prostatectomy (Stephenson, et al)
Journal of Clinical Oncology, Vol 25, No 15 (May 20), 2007: pp. 2035-2041
Full text: http://jco.ascopubs.org/content/25/15/2035.full

"An undetectable PSA level following salvage radiation therapy is more frequently achieved in men with lower pre-radiation serum PSA and those without seminal vesicle or lymph node involvement."
Salvage radiation therapy for prostate specific antigen progression following radical prostatectomy: 10-year outcome estimates.
Pazona, Catalona, Han, Hawkins, Roehl
Journal of Urology 2005 Oct;174(4 Pt 1):1282-6.
http://www.ncbi.nlm.nih.gov/pubmed/16145393?dopt=Abstract
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) Jan-Mar 2007
PSA 9/2007 and thereafter <0.1
pcabefore50.blogspot.com

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 10/6/2010 8:33 PM (GMT -6)   
Thanks Galileo. Hadn't seen that study .
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
15 month PSA <.01

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2460
   Posted 10/6/2010 9:06 PM (GMT -6)   
I'm a high Gleason case. So far PSA has been undetectable for 15 month. My next test is coming up in less than 2 weeks. I do the ultra sensitive test. I don't know what I'll do is it jumps up significantly.
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
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 5 months
2 months 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 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 10/6/2010 9:12 PM (GMT -6)   
LV:
 
It is your call, but I really think you are making a mistake. There are definite studies that show SRT is significantly more effective when started at a lower PSA.
 
I believe some studies show 2 major cutoff points. Best to get started at or below 0.20.
The next point is 0.50.
Much above that, and the odds greatly decrease.
 
Your doubling time argument is a good one, but I don't think it nullifies the above.
 
I know this is not what you wanted to hear
 
Mel

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/7/2010 8:39 AM (GMT -6)   
All a big thank you for your posts and comments

To reply to the general statements made.

I am a gleason 7 (3+4) which as pointed out can be very unpredictable. Gleason 7 can behave like a 6 or more aggressive like a 8. General rule is that Gleason sums of 8 or higher are at high risk and required agressive therapy in any setting, primary or secondary. So the Active Surveillance on my part is solely because right now my cancer is acting more like a gleason 6 and not like a gleason 8. Which means more of the grade 3 cells were left behind after surgery.

Micro-mets...sure that is a possibility I did have PNI on biopsy. But not likely. Pre-surgery PSA level, post surgery gleason sum, negative SVI and Lymph nodes and only a single positive margin all indicate local recurrence only. Active Surveillance in recurrent setting has it's risks, but that risk is extremely small given the stats I have.

SRT should be done at earliest stages of recurrence. Very true...won't argue with anyone on that. But what is considered low. A 0.5 or 0.6 and below is what is considered low levels. The higher the risk someone has, then the earlier the need to start. I am low risk and I can hold off for a few more months or years maybe. Can it progress...sure that is why Active Surveillance doesn't mean doing nothing...it means monitoring on a regular basis and take action when deemed appropriate.

Why wait? Sure at some point I will need additional therapy. I have known this for the last 2 years. My first 3 month PSA after surgery was .06 So many of you here are at the level now and are looking into what comes next...some with anxiety and others not so much. I stand by the fact that the kinetics of your particular disease will dictate what you do next, treat early or later. In my case I have been able to hold off. (Your mileage may vary)

The other reason unrelated to the disease for waiting is that I will retire at the end of next year. The treatment center is an hour each way from either work or home. The company I work for downsized and has been sold and with the reduction in work staff, my plate at work is quite full. So taking time off daily from work for treatment isn't something I want to do right now...BUT if the disease progression increases to the point that the risk management will be counter-productive then I will have to pull the trigger. So if I don't have to right now...I wont.

I have been a member of this forum for the last couple of years. During this time I have seen a shift towards recommending Active Surveillance to those low risk newly diagnosed men. I applaud everyone for helping those men to look into this method. They are just as scared and anxious at their diagnosis as we were when diagnosed. We advise newly diagnosed men that it isn't necessary to rush to treatment with low risk case. We help them define their risk based on our own research and experience. But when it comes to recurrence, we still tend to lump all recurrence in the same risk catagory. That they are all dangerous and need to be treated early and hard. But is that really the case for everyone with a recurrence. I don't think so. I believe that recurrence has it's risk defined on the kinetics of the cancer itself. Which is highly individualized. We already know that no two people have the identical cancer and that they will not have the same benefit from any form of treatment...primary or secondary.

With more men that have chosen surgery for their primary treatment because of early PSA detection, so does the number of recurrence increase. It is a fact that nearly 30% of all surgeries will have a positive margin and a local recurrence as a result. I don't believe that those men (myself included) with this type of a recurrence should be lumped in with those men that had EPE, SVI or Lymph node or other factors that place them into high risk.

I am just one voice amoung many men that have or will have a recurrence, and I am just saying...take a hard look at your own particular disease and evaluate your risks for yourself. Don't fall into the trap that one size fits all. Am I wrong? That is the risk I take, but with the cards I am playing with...it's a pretty good risk.

Best of luck to all that fight this disease and I hope to calm the fears and anxiety for those with a low risk recurrence.
You are beating back cancer, so hold your head up with dignity

Les

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Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 10/7/2010 8:52 AM (GMT -6)   
Les, that was a terrific post. I'm with you on this and I hope everything works out for the best.

You didn't answer my question about diet and lifestyle though. While on AS, are you planning any changes in what you eat and drink?
Age: 63
Gleason grade: 3+4=7, pT2c NX MX
Robotic RP: Sept. 15th, 2009
No lymphatic/vascular invasion, seminal vesicles, margins tumor free.
Pre surgery PSA: 4.1
Post surgery PSA's: .04, .03, .02, .05, .02
ED: Improvement slow but there are positive signs. No incontinent issues.
Surgery: Dr. Jim Hu. Dana-Farber/Brigham and Women's, Boston

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/7/2010 8:52 AM (GMT -6)   
les, you are a great guy, with a great story. i have to be blunt, hopefully not rude, i think you are in "recurrance denial". the rules and logic of AS, which i think is a great breakthrough here at HW, does not apply to you in any sense of the word. AS only has to do with a "pre-treatment" plan after a PC dx. has nothing to do with recurrance issues. you had PNI, every single rad oncologist i spoke to emphathized the worry about PNI, interestesting, because almost all surgeons poo-poo the subject, even the great Walsh downplays it. The rad docs don't, they realize that with PNI you have many clear giant paths to allow rogue cells and clusters to escape anywhere.

not telling you what to do, will still support you no matter what. you need to stand outside your current frame of mind, and i honestly believe you are making or about to make a mega mistake in your journey. i wish i could feel wrong about what i said. even though, for me, srt was the chain of motions that all but destroyed me because of side effects, it was still the only thing that is giving me any chance of survival, i too am a gleason 7, with extrem velocity issues.

re-think things brother, thats all i ask

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 ?
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, on Catheter #21, will be having Ileal Conduit Surgery in Sept.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/7/2010 9:35 AM (GMT -6)   
Red...not a great change in diet. Mostly stayed away from the red meats and moved to fish and veggies. But I still enjoy the hamburger and steaks every so often. I did change from fish oil to krill oil...don't know the daily amount. My wife is big on supplements and knows what I should take and not to take. I trust her, so I just pop them down every morning and evening and never question.

David...I know that this sounds like denial to you...and I don't take any offense at your statement. Your own case was very high risk...you had no choice. You were a gleason 7 that was behaving like a gleason 8. If your cancer velocity had been much much lower, you could have waited. What would that have done for you today? What if you had decided on HT instead of SRT. We don't know the answer and it's not even worth dwelling on now. But this is exactly my point, your cancer and my cancer are totally different in every respect exept the gleason sum. So does that mean I should follow your protocol or you follow mine. Not ever, not now and never even suggested. And that was my point. Everyone is different and that there are possibilities that recurrent cancer treatments can be delayed under certain curcumstances without any adverse effects and allow time for the body to heal from surgery. That my friend...is not denial. It is being practical about the disease risk and taking some of the fear out of what seems to come to surface again (just like before surgery) with recurrence.
You are beating back cancer, so hold your head up with dignity

Les

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Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 10/7/2010 9:43 AM (GMT -6)   
David, your mention of perineural invasion got me to run to my Walsh book and you are right about what surgeons think of PNI. Walsh says in his book, "some noted pathologists have suggested that it should not even be commented on when found in a biopsy, because it's not worth worrying about." Just another contradiction with this darn disease that we have to cope with I suppose.

Les' thread is of great interest to many of us. It is something that I have been curious about, that is, can AS be applied to men AFTER their PCa treatments? Can a cleansing change to healthful foods and drinks boost our immune systems sufficiently to actually kill PCa cells? That is the million dollar question for me. There is probably insufficient research to make a valid conclusion because, let's face it, there's no money in it.

So Les, what changes are you making in your diet, if any?

Last month I experimented with this subject prior to my last PSA test. I ate and drank nothing but healthy foods and drinks, including tomato sauce with lots of garlic, blueberry smoothies galore, (and no cheating!!!) and my PSA came back to .02 from 05. I know, I know this is an extremely unscientific test and a very limited sample. It's just my personal experience. However, the food we consume does have a huge effect on cancer, in both directions, IMHO.
Age: 63
Gleason grade: 3+4=7, pT2c NX MX
Robotic RP: Sept. 15th, 2009
No lymphatic/vascular invasion, seminal vesicles, margins tumor free.
Pre surgery PSA: 4.1
Post surgery PSA's: .04, .03, .02, .05, .02
ED: Improvement slow but there are positive signs. No incontinent issues.
Surgery: Dr. Jim Hu. Dana-Farber/Brigham and Women's, Boston

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 10/7/2010 10:31 AM (GMT -6)   
Les:
 
I hope you don't mind if I chime in once more. You ARE CLEARLY IN DENIAL. You keep referring to yourself as low risk. The fact is that with your stats, by definition you are not low risk. In fact, you are in the upper range of intermediate risk (as am I).
 
You do have a long doubling time. That is good, but to hang your hat on just that one parameter is foolish.
 
I, too, would urge you to reconsider. The bottom line is that none of us want to go to the next miserable treatment step.
 
Your work concerns are another fly in the ointment. That is a tough situation.
 
I hope you don't mind my stating an opinion this forcefully.
 
Mel

John T
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Date Joined Nov 2008
Total Posts : 4268
   Posted 10/7/2010 10:53 AM (GMT -6)   
Les,
You are well informed and have a very logical and reasonable plan. You recognize that there are some risks and are willing to accept them. I think that this is a very appropriate way to approach any treatment decisions.
JT
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.

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/7/2010 11:21 AM (GMT -6)   
Mel...just out of curosity...how are you defining intermediate or high risk? Based on gleason sum...velocity...PSA doubling time...PSA slope??? Very curious about that. Please share why you don't think I am low risk and what stats are you using to base your opinion on. I have shared my stats with you and they include all the parameters listed above. They don't indicate anything but low risk at this point in time. If necessary I will find all the medical links and nanograms that are currently being used in the medical field and post them when I have time. But no matter which table or nanogram you find or use, the number always comes up as low risk with my stats and with a recurrence. Heck there is even a namogram that even predicts based on my stats that metastatic cancer is possible in the year 2018 if left untreated. Seven years from now. We both know I will do something long before then.

Now to add some comfort to all...I am being retested in 3 months...moving the initial protocol of every six months to three. This is active management of my disease and I will take appropriate action if deemed necessary. How can anyone call this stragedy "Denial" is beyond me.

Thanks JT
You are beating back cancer, so hold your head up with dignity

Les

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