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Old 08-30-2007, 04:48 AM   #1
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After RP Surgery- possibilities of regrowth of cancer down the road...

My primary urologist put my chances at 67 percent for non-recurrance after five years. My post-op Gleason came back 3+3=6, T2c, N0, M0...

Just wondering if anyone else got similar predictions from their urologist?
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Old 09-05-2007, 01:11 PM   #2
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

able,

This has been in the back of mind as well, but from the (lack of) responses it seems like no one wants to talk about it.

When I saw my urologist about a couple of months ago his prognosis was more positive though.
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Age 44, PSA 4.48, family history, 3/8 positive biopsy. Open RP at Royal Vic by Dr. Taguchi, April 30, catheter out May 18, 07. Pathology: 3+4, T2c, neg margins. 8 weeks & 6 months PSA <0.01.

 
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Old 09-05-2007, 01:49 PM   #3
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Quote:
Originally Posted by mtl63 View Post
able,

This has been in the back of mind as well, but from the (lack of) responses it seems like no one wants to talk about it.

When I saw my urologist about a couple of months ago his prognosis was more positive though.
Seems like long term prognosis doesn't capture too much interest. Considering my post-op path...

Wonder why my long term (5y) outlook isn't better?

Think I'll get my uro to be more forthcoming on my next visit...

Glad to hear yours is more positive.
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robotic LRP; Jan2007

Last edited by able5; 09-05-2007 at 01:51 PM.

 
Old 09-05-2007, 04:22 PM   #4
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

mine was listed as T2a but after reading the docs notes and our discussions, I do not see how it should have been graded above T1c as the doc claimed it was not palpable.

from what I could find NO and MO are applicable.

pre-op PSA was 3.2 at highest level recorded.

Doc does not like numbers or promises but stated if he were to put a number on it, he would give 95+% no recurrence.

The only things I can see that your doc may have included is a general personal pessimism and the T2c situation.

What are your post op PSA numbers? Maybe there is something there he saw.
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Old 09-06-2007, 12:03 AM   #5
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Hi able,

There are a lot of post-op nomograms for prostate cancer online. You can search for them because we can't post the links here.

The on-line calculators are a little better than the static, online graphs, because they ask you for specifics regarding your condition.

67% for non-recurrance seems low for your biopsy results.

Best regards,

Idaho

 
Old 09-07-2007, 01:56 PM   #6
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Quote:
Originally Posted by gooby View Post
mine was listed as T2a but after reading the docs notes and our discussions, I do not see how it should have been graded above T1c as the doc claimed it was not palpable.

from what I could find NO and MO are applicable.

pre-op PSA was 3.2 at highest level recorded.

Doc does not like numbers or promises but stated if he were to put a number on it, he would give 95+% no recurrence.

The only things I can see that your doc may have included is a general personal pessimism and the T2c situation.

What are your post op PSA numbers? Maybe there is something there he saw.
My 1st post-op PSA was <.01 which he called undetectable...

I'm just over 7 months post-op...

Just had blood drawn for my 2nd post-op PSA read-out next week.

Might be the T2c situation as you suggest?

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Old 09-07-2007, 03:52 PM   #7
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Quote:
Originally Posted by able5 View Post
My 1st post-op PSA was <.01 which he called undetectable...

:
I would suggest he is hedging his bets. The PSA does not indicate a problem. The pathology did not indicate a problem.

He either has seen a situation such as yours end up with recurring cancer or he just is pessimistic.

When you speak to him, you might ask him why the numbers he gave you. I don;t see it but I am not a doctor either.
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Old 09-08-2007, 06:53 AM   #8
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Thanks gooby;

Sage advice my friend.

Funny thing though...

When he gave me his prognosis, it wasn't just some off-handed passing remark. Not only did he have my chart in his hand but he made an extra trip to get more documentation from his office. When he returned he said to me, "I just wanted to be sure I wasn't giving you any false hope so I doubled-checked my figures." I remember we had a short discussion about nomograms and he mentioned that the nomograms are generally good tools. He said that the nomograms he is familiar with are pretty much copies of the MSKCC model. Results are normally accurate to +/- 8 to 10 percent. He also agreed that they are helpful but, from his experience, the specific prognosis of a patient is better judged by the treating professionals. He said that it's not uncommon for patients to begin to rely upon the results of some generic nomogram and ignore their specific situation. Bottom line, according to him, you'll always be a cancer patient and you will always need professional care. Recurence is always a possibility. Apparently he is not a big proponent of the word "cure".

Nevertheless, because I'm still not comfortable with his initial assessment, my prognosis is certainly worth further discussion.

Thanks again gooby and all you other guys & gals for adding your thoughts to this thread.

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robotic LRP; Jan2007

Last edited by able5; 09-08-2007 at 07:13 AM.

 
Old 09-08-2007, 09:17 AM   #9
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Please keep my father-in-law in your thoughts and prayers. He has been battling PC for 15 years when he had RP surgery. His biggest mistake was not having chemo or radiation after his surgery because he had margins. Chemo was offered and he thought it was optional. Then as things progressed, he had to have more treatments like hormonal, more surgery (Orch...) etc.. He is not doing well at all. Now was prescribed Fentanyl for the pain.

This has been really rough as we are battling our own case of PC. I guess the one thing it does do for us, is make us aware that if we get to a point that anything is offered as a treatment option because something is spotted or changes, we will be taking that option as a safety net.

 
Old 09-08-2007, 09:29 AM   #10
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

I'm so sorry to hear about your father-in-law, debbie. Sometimes our healthcare professionals don't provide all the information we need or they don't test for our understanding. I believe that is a big part of their job. I know that they are not perfect, but I'd like them to be as perfect as possible.

My urologist and surgeon is always asking me if I have any more questions and the door is open to call the office for any reason. I'm grateful for that.

You're right, we should use our experience as prostate cancer survivors, friends, and family to help others be informed and to be very vigilant in understanding and fighting this disease with all that is available, according to where we live and according to our current monetary means.

I wish your father-in-law well and will remember him in my thoughts and prayers.

Kind regards,

Idaho

 
Old 09-08-2007, 12:08 PM   #11
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Thanks Idaho,

He didn't understand that all treatments are options. Not required. It was his choice. What he didn't understand, because he assumed with it removed, it was all gone, that it was a needed treatment.

This does make our journey more scary and more difficult.

It has been very rough.

 
Old 11-16-2007, 09:19 AM   #12
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Quote:
Originally Posted by able5 View Post
My primary urologist put my chances at 67 percent for non-recurrance after five years. My post-op Gleason came back 3+3=6, T2c, N0, M0...

Just wondering if anyone else got similar predictions from their urologist?
I just saw your post with the catchy title as I'm getting familiar with the board. I guess you are getting comfortable with your prospects now with nearly a year under your belt, but I wanted to add a little more encouragement to some of the good information in the replies you got. I looked over some of your other posts to get a better idea of your situation.

I'm going over this in some detail as I know you and other board members would like to be able to use and share these great predictive tools. It's clear that, at least as of the time of your post, some of this information was not generally known to responders. Actually, we now have a pretty good handle on predicting the odds of recurrences as well as their seriousness, though more research is still needed.

We need to get some of the key non-profit websites added in a list so we an refer to them. I'll suggest that; perhaps it's already in the works. In the meantime, I just ran your numbers using a popular nomogram that has been mentioned in this thread (took about a minute) for post RP prognosis. I used: Pre Treatment PSA 4.7; first post RP Gleason Grade 3; second post RP Gleason Grade 3; Gleason sum 6; Year RP 2006 (the nomogram will not yet take 2007 - strange?); Months free of disease 11, and no checks for positive margins, SV, LN, extra capsular extension or neoadjuvant hormonal or radiation therapy. The result was a prediction of 99% likelihood of being free of disease at 2, 5, and 7 years, plus or minus 8%. I can't see where your doctor is coming from for your case. That 67% he quoted sounds about right for a generic prediction for recurrence for all men who have RPs, whatever their PSAs, stages, Gleasons, cores positive, etc. It sure sound wrong for you as other replies have suggested!

Also, the above nomogram does not take into account post RP ultrasensitive PSA testing. Yours have been as good as possible (lower thresholds, like .003 are technically possible but not of practical clinical value at present), and research indicates that the < 0.01 result is associated with a very low likelihood of recurrence. You can read an abstract of some of the research by going to the free Government site [url]www.pubmed.gov[/url] and using this search string " shen s [au] AND lepor h [au] AND yaffee r [au] AND taneja ss [au] ". Here's a key sentence from this 2005 study: "... RESULTS: At a mean followup of 3.1 years 54 of 545 men (9.9%) experienced biochemical relapse with a mean time to relapse of 25.2 months. Relapse rates in men with a PSA nadir of less than 0.01 (423), 0.01 (75), 0.02 (19) and 0.04 or greater ng/ml (28) were 4%, 12%, 16% and 89%, respectively...." Relapse for the purpose of this study was defined as two readings of .1 or greater.

In another study (Sakai I, ... Miyake H, 2006) linked to the first as a "related study" by PubMed, the key findings were similar: "... In this series, biochemical recurrence was defined as PSA persistently >0.2 ng/ml. RESULTS: Based on the nadir PSA value, we divided 127 patients into three groups as follows: group A (n=99):<or=0.01 ng/ml; group B (n=16): 0.01-0.05 ng/ml, and group C (n=12): >or=0.05 ng/ml. The nadir PSA value was significantly associated with preoperative PSA value, but not other conventional clinicopathological prognostic parameters. During the observation period (median 31 months, range 6-75 months), biochemical recurrence occurred in 16 patients, that is, 1 in group A (6.3%), 4 in group B (25.0%), and 11 in group C (91.7%)...."

Another useful study of the seriousness of recurrence, which you do not now have and probably will not, is in the SJ Freedland study published in JAMA in 2005 with a very nice chart and layman's language description at Dr. Freedland's home institution web site. Basically, it predicts the seriousness of recurrences using survival time based on the PSA doubling time after the RP (that is, how many months it takes the post-RP PSA to double), whether the recurrence (meaning PSA rising to .2 in this study) took up to three years or more since the RP, and whether the post-op Gleason was less than 8 or ranged from 8 to 10. Plugging in your numbers, PSA doubling time (PSADT) of infinite (the best) which fits the best category of greater than 15 months, hypothetical recurrence after three years, and Gleason of less than 8, and choosing the table for survival at 15 years (instead of the 5 or 10 year tables), your hypothetical chance of survival would be 94% at 15 years (with a 95% confidence range that the true number is between 87% and 100%, which is very high confidence). Also, the author's home institution did not typically use hormonal blockade therapy extensively on the patients who recurred in this study until they experienced symptoms. Earlier use would almost certainly boost survival even more. (In contrast, survival at just five years was only 51% (though based on few patients, estimated true value falling in range of 19% to 82%) if their PSA doubling time was less than three months, their recurrence happened earlier than three years, and they were Gleason 8 or higher; survival at ten years for such men was estimated at less than 1%, though based on few cases.)

Finally, the team led by highly respected researcher/physician Dr. Anthony D'Amico (with Dr. Catalona as senior author) found that a PSA rise of more than 2.0 in the year prior to diagnosis was an additional high risk factor, a factor independent of and in addition to (or subtraction from for a PSA rise of 2.0 or less in the year prior to diagnosis) unfavorable PSA, Gleason and stage. (His team studied and published on both surgery and radiation, but these are the RP results (2004, NEJM for July 8).) If your PSA rise in the year prior was 2.0 or less, your risk is actually significantly less than would be predicted by nomograms that do not account for the year prior velocity factor; for all men, the study found the risk was almost nil, around 1% risk of death from PC at ten years (and flat trend - virtually no increase) despite recurrence rates ranging from about 30% to about 40%, if the prior year increase was 2.0 or less.

Let's assume hypothetically that your PSA increase in the year before diagnosis was more than 2.0 and plug in your stage, PSA and Gleason individually. Death due to prostate cancer for men with a year prior to diagnosis rise of more than 2.0 was about 30% for all stage 2 patients at ten years, disregarding Gleason and PSA; it was about 8-9% for patients with PSAs at diagnosis of less than 10 at ten years; and it was around 7-8% for all patients with a Gleason of 6 at 10 years. Keep in mind that this study did not consider post RP ultrasensitive PSA results. Also, the patients in the study were stage T1c or T2 patients treated between 1989 and 2002 in St. Louis. There have been important improvements in treatment since the time many of these patients were treated, so survival would undoubtedly be better.

Also, there are dietary/nutritional/supplement, exercise, stress reduction and mild medication tactics that can all help discourage prostate cancer from a serious recurrence.

Unfortunately, your experience with your doctor's worrisome prediction illustrates what I have found all too common in nearly eight years of dealing with my own case: though doctors are often good at the therapy end of their own specialties, they are often not well informed about many key issues that concern patients. I know many fellow survivors who would heartily agree.

Take care and good luck,

Jim

 
Old 11-17-2007, 05:57 AM   #13
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

an excerpt from Jims post

Quote:
), and research indicates that the < 0.01 result is associated with a very low likelihood of recurrence
. You are going to have to explain how you obtain a reading of <.01. I was informed that most of the tests used (2nd gen PSA assay) typically have a detection limit only down to .02 or .03 typically. If they detect ANY PSA, they will report their lowest limit (the .02 or .03 number) and will not even be reported as < but simply reported as their lowest limit. The only tests I have read of that test lower than this are the 3rd gen assay (which I presume you referred to as the

Quote:
post RP ultrasensitive PSA testing.
Can you explain where all these <.01 test results are coming from, especially since the 3rd gens have not been around long enough to allow signifigant history to be truly indicative of results yet.
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Old 11-17-2007, 07:51 AM   #14
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

Quote:
Originally Posted by gooby View Post
an excerpt from Jims post

. You are going to have to explain how you obtain a reading of <.01. I was informed that most of the tests used (2nd gen PSA assay) typically have a detection limit only down to .02 or .03 typically. If they detect ANY PSA, they will report their lowest limit (the .02 or .03 number) and will not even be reported as < but simply reported as their lowest limit. The only tests I have read of that test lower than this are the 3rd gen assay (which I presume you referred to as the



Can you explain where all these <.01 test results are coming from, especially since the 3rd gens have not been around long enough to allow signifigant history to be truly indicative of results yet.
Actually, the third generation ultrasensitive PSA tests have been around a long time, but I'm not surprised that you don't think so as so many doctors have adopted the ostrich approach to using these tests. Think about it: if the patient does not learn he has a recurrence until a year or more after it begins, there's a longer period where he is not bothering the doctor with questions and worries that many surgeons are not equipped to handle.

After diagnosis in December 1999, I attended the National Conference on Prostate Cancer 2000 in Long Beach, California. Dr. Stephen B. Strum talked to us about ultrasensitive PSA testing and included ten abstracts of papers on ultrasensitive PSA testing published in peer-reviewed medical journals. Here are the lead authors, standard abbreviations for the journals and the dates of these papers: Witherspoon LR, J Urol 1997; Arai Y, Int. J Urol, 1998; Milone R, Int J Biol Markers, 1995; Khosravi MJ, Clin Biochem, 1995; Yu H, J Urol, 1997; Haese A, J Urol, 1999; Ellis WJ, Urology, 1997; van lersel MP, Br J Urol, 1996; Pruthi, Urology, 1997; and Yu H, Clin Chem, 1995. As you can see, papers have been published in highly respected journals for more than a decade on ultrasensitive testing. You can see the abstracts by going to the free Government site [url]www.pubmed.gov[/url] and plugging in the above information, as in " witherspoon lr [au] AND J Urol AND 1997 [dp] ". I just tested this first citation and it worked. If you get several hits, find the one you want and then click on the authors list.

Frankly, if I were just realizing that ultrasensitive PSA testing has been around for a long time but that many doctors were not using it, it would make me angry. Urologists have no excuse that the information was in obscure journals. Look how many of the papers were in the bibles of urologists: J Urol (The Journal of Urology) and Urology.

Although some of these tests were available well before FDA approval, FDA approved the Immulite Third Generation ultrasensitive PSA test years ago, and I'm confident that meant it approved of its claims. The claims include a practical, reliable ultrasensitive detection threshold of <0.01. The test is actually capable of detecting PSA down to .003, but that is not clinically practical. As I understand it, it requires special test equipment set up and special procedures, and <0.01 gives you as much clinically significant information. If anyone knows otherwise, I would appreciate knowing.

There is an outstanding article with a section on ultrasensitive testing written by Dr. Jon McDermed, Pharm D, available free on the website of the Prostate Cancer Research Institute: "Using PSA Intelligently to Manage Prostate Cancer." It's in the August 2005, vol. 8, #3 edition of the online newsletter.

I think you'll agree after reading up on ultrasensitive testing that its role in reliably giving very early prediction of recurrence (or giving very early peace of mind) has been well established. You can also search [url]www.pubmed.gov[/url] for more recent research on ultrasensitive PSA testing. I just did that using "ultrasensitive PSA test AND prostate cancer " and got 28 hits, including three from 2006.

When my PSA drops below .1 when I'm on hormonal blockade, my medical oncologist can send my results to a fast ultrasensitive test using a Tosoh analyzer that is in an adjoining building, and I get results in a day or two. However, the lower limit of that facility is 0.04. When it appears my score will be lower, we send it out of state to a facility using the Immulite Third Generation test, and I get results as far down as <0.01 within several days to a week.

While I would want a test with a lower limit of <0.01 if I were monitoring for recurrence after surgery, apparently getting down to <0.05 is good enough for those monitoring the success of hormonal blockade, especially triple blockade. That suggests strongly the absence of androgen independent cancer, or at least a minimal level. One of the leading experts thinks it's no longer necessary to keep the PSA below 0.05 for a year to reach the conclusion of minimal or no AIPC.

I would be happy to answer any other questions about this superb technology. In my mind, it's one of the breakthroughs that separates our generation of patients from our fathers and grandfathers.

Jim

 
Old 11-17-2007, 07:59 AM   #15
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Re: After RP Surgery- possibilities of regrowth of cancer down the road...

The Cleveland Clinic must use the ultrasensitive testing because Dr. Klein wrote the result on his white board for my husband of <.003

 
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