Don M. - Pathology Report.....

[Guest guest]

Hello Everyone,

I posted a few weeks back but here is just a quick recap. I'm the 45 year old

guy who had protons in summer of 2009 at LLUMC. Protons failed and this October

6th I had prostatsectomy at National Institute of Health (NIH). By the way, my

most recent post concerning post surgery incontinence is doing much better. I

appreciated all the input from everyone.

A few days ago my local urologist received my pathology results from NIH. Well,

it's a little scary but still remaining optimistic.

-Margins were positive

-GS was a 10

-One seminal vescicle came back positive

-32 lymp nodes removed, 2 tested positive

-6 week post surgery psa came back at .07 (i'm not on any type of adt)

My next psa is schedule for January. I'm trying to decipher my results the best

way I can. I'm obviously concerned about having 2 of my lymph nodes pathology

coming back positive but on the positive I guess it could have been worse. Now

the 10 GS isn't very reassuring. A little frustrated with the protons treatment

just 2 years ago, I mean c'mon a 10, I was originally a 7 with psa 8.6. Were

they just pumping air and not protons into my prostate or what..LOL! All

kidding aside, any input would be appreciated. From what I gather concerning a

PSA of .07 is pretty good post surgery. I believe the definition of an

undetectable PSA is .2 but I keep reading conflicting #'s. Thoughts???

Thanks,

Don M.

[Guest guest]

Don:First, I am impressed with the skill of your surgeon. You have been given a second chance with significant tumor removed by surgery. He (she?) also did what was necessary with the complete node resection. This was a full-on surgical event.Did the pathology identify the location of the nodes? Did the path identify the amount of tumor in the nodes by size, density or some other measure? Nodes that are close to the prostate and next to each other, with small amounts (less than a tenth of a millimeter or thereabout) can be better than distant nodes with more tumor. Did they estimate the G of the node cancer cells? What was the result of the microscopic examination of your prostate gland? Evidence of radiation? Active cell growth in some locations? Necrosis or radiation damage some- or any-where? I wonder how many such specimens the pathologist has experienced? Certainly not too many. Were you biopsied prior to surgery, and after Proton? Result? Lots of questions with not many answers.Since you are on a trajectory that is unlike nearly anyone else, I have to ask if external radiation using electron beam (conventional radiation type) is allowed or recommended for such a patient? Margins and nodes and SVI can be addressed with XBRT, if previous treatment does not disallow. I have never seen a case such as yours so I must ask from ignorance here. For a G 10 at surgery, regardless of previous treatment, I think you have done well and if you recover from surgery with reasonable speed and limited loss of function then you are on the road to a longer life. The benefit of surgery that you have survived is that your status is much more clear than with any non invasive treatment. Any questions about pathology can be addressed by another expert doctor looking at your samples and tissue, if this will help to determine treatment. Another opinion by an expert pathologist, including, but not limited to those questions an amateur such as myself may ask, may be helpful. This was a dramatic change in G score, after all. Ask your doctor, as they say on television. Insist, if you feel you must.As a G9 myself I think you are traveling on a path of additional treatment for your condition, which may have interruptions, but may well last for many years. The "many years" is the important part of that sentence. Hello Everyone, I posted a few weeks back but here is just a quick recap. I'm the 45 year old guy who had protons in summer of 2009 at LLUMC. Protons failed and this October 6th I had prostatsectomy at National Institute of Health (NIH). By the way, my most recent post concerning post surgery incontinence is doing much better. I appreciated all the input from everyone. A few days ago my local urologist received my pathology results from NIH. Well, it's a little scary but still remaining optimistic. -Margins were positive -GS was a 10 -One seminal vescicle came back positive -32 lymp nodes removed, 2 tested positive -6 week post surgery psa came back at .07 (i'm not on any type of adt) My next psa is schedule for January. I'm trying to decipher my results the best way I can. I'm obviously concerned about having 2 of my lymph nodes pathology coming back positive but on the positive I guess it could have been worse. Now the 10 GS isn't very reassuring. A little frustrated with the protons treatment just 2 years ago, I mean c'mon a 10, I was originally a 7 with psa 8.6. Were they just pumping air and not protons into my prostate or what..LOL! All kidding aside, any input would be appreciated. From what I gather concerning a PSA of .07 is pretty good post surgery. I believe the definition of an undetectable PSA is .2 but I keep reading conflicting #'s. Thoughts??? Thanks, Don M.

[Guest guest]

Hi ,

Thanks for all your input, its appreciated. Yes, it was a full on hail mary

type of surgery. When I went to NIH back in August endo recto mri image and

then a guided biopsy based upon those images is when they found the cancer was

still within the prostate and 1 seminal vescicle. A couple months prior I had a

" random " biopsy by Urologist here in the Seattle area. The results came back

negative. It's actually pretty interesting what Dr. Pinto and his team is doing

with the guided biopsy research vs the random. In addition I had every scan you

can imaginable (prostascint, dexa, pelvic mri, bone scan) by multiple

institutions (Multi Care, Seattel Cancer Care and NIH) which all came back

negative for metastisized cancer. Again, the guided biopsy based upon those

endo recto mri images is how they found the cancer still active. Dr. Pinto and

his team at NIH agreed we'd go wide, removing everything he possibly could

(nerves, seminal vesicles, pelvic lymph nodes & obviously entire prostate). My

surgery took 7 hours which was done via da vinci. We knew it was going to be an

all day event since being treated with protons and having surgery as a salvage

treatment makes the surgery more difficult. I guess after radiation the

prostate area becomes a little sticky (per my surgeon). You've asked some very

good questions concerning my pathology report which I don't have the answers.

Tomorrow i'll call NIH and have them send me the results. In regards to having

radiation at this point, the answer was " no " . I guess i'm no longer a candidate

for radiation since I already received radiation initially. They said it would

be too risky (i.e, nerves, etc...). I'm recovering well, just made it back to

gym 2 days ago. Attempted to start my running routine again but the bouncing

makes me leak a little. I'm not fully continent but getting close. Besides that

never had any symptons and always felt healthy and fit prior to diagnoses and

even now. With the exception of some post surgery soreness.

don

>

> > Hello Everyone,

> >

> > I posted a few weeks back but here is just a quick recap. I'm the

> > 45 year old guy who had protons in summer of 2009 at LLUMC. Protons

> > failed and this October 6th I had prostatsectomy at National

> > Institute of Health (NIH). By the way, my most recent post

> > concerning post surgery incontinence is doing much better. I

> > appreciated all the input from everyone.

> >

> > A few days ago my local urologist received my pathology results

> > from NIH. Well, it's a little scary but still remaining optimistic.

> >

> > -Margins were positive

> > -GS was a 10

> > -One seminal vescicle came back positive

> > -32 lymp nodes removed, 2 tested positive

> > -6 week post surgery psa came back at .07 (i'm not on any type of adt)

> >

> > My next psa is schedule for January. I'm trying to decipher my

> > results the best way I can. I'm obviously concerned about having 2

> > of my lymph nodes pathology coming back positive but on the

> > positive I guess it could have been worse. Now the 10 GS isn't very

> > reassuring. A little frustrated with the protons treatment just 2

> > years ago, I mean c'mon a 10, I was originally a 7 with psa 8.6.

> > Were they just pumping air and not protons into my prostate or

> > what..LOL! All kidding aside, any input would be appreciated. From

> > what I gather concerning a PSA of .07 is pretty good post surgery.

> > I believe the definition of an undetectable PSA is .2 but I keep

> > reading conflicting #'s. Thoughts???

> >

> > Thanks,

> >

> > Don M.

> >

> >

>

[Guest guest]

> As to PSA post-surgery: Medical Oncologist Strum often

> remarks in responses to p2p posts, if the prostate gland is

> surgically removed and all the cancer with it, then it stands

> to reason that the PSA level should be <0.01ng/ml with an

> ultrasensitive/3rd generation PSA test because without the

> prostate gland to produce PSA there should be no PSA. I would

> only suggest that there might be as much as 0.03ng/ml PSA

> post-surgical removal showing up because that much can be

> provided by other sources. ...

Don,

As far as I know, Chuck is right. A PSA of 0.07 is a little

higher than can likely be accounted for by something other than

prostate tissue. And in your case, since the prostate was

removed, in theory the only possible source of a higher than

expected PSA would be tumor cells.

However, I also agree with your doctor to wait for the next PSA

test. My reasoning is as follows:

1. It may just be conceivable that you still have a little

residual PSA from before the surgery. The body eliminates it

pretty quickly but I don't know if six weeks after surgery is

enough to have gotten rid of every bit of it.

2. It may just be conceivable that you are producing more PSA

elsewhere in the body, i.e. in the adrenal gland, than would be

normal.

3. If you wait for one more PSA test you may learn something

about the situation which you could not learn if you immediately

start ADT. The ADT will eliminate virtually all PSA and you

won't be able to tell if the PSA was falling on its own. On the

other hand, if the PSA is rising, the rate of rise may be

calculable from the difference between the two PSA tests, which

may give you some information about the aggressiveness of the

cancer (though your Gleason 10 already indicates high

aggressiveness.)

4. Having been treated myself at NIH (in the Radiation Oncology

Department), I have developed a high level of respect for their

ability. I figure if waiting is what they're recommending, they

know more than I do.

Although your cancer seems very serious, for whatever it's worth,

I think you're doing much better than most people with such

serious cancer characteristics. You've gotten two world class

treatments. Your PSA has been knocked down to almost nothing.

If you do have to go on ADT, you'll be doing it with a very, very

small amount of cancer in your body, and with a correspondingly

good chance of controlling it for a long time.

I know that you can't help but be concerned but I have hope that

you'll still be with us for many, many years.

Best of luck.

Alan

[Guest guest]

I apologise in advance if the point below

has already been covered in this thread – I haven’t had much time

over the past week to follow posts.

Has there been any reference to the

recently (last month) published study on the reliability of ultra-sensitive

tests in the decision making process. Here it is:

J Urol. 2011 Oct 17. [Epub

ahead of print] Poor Agreement of Prostate Specific Antigen Doubling Times

Calculated Using Ultrasensitive Versus Standard Prostate Specific Antigen

Values: Important Impact on Risk Assessment. Reese AC, Fradet V, Whitson JM,

CB, Carroll PR. SourceDepartment of Urology, UCSF Helen Diller Family

Comprehensive Cancer Center, University of California, San Francisco, San

Francisco, California.

Abstract

PURPOSE: In men with biochemical recurrence after

radical prostatectomy, a rapid prostate specific antigen doubling time is

associated with adverse outcomes, and is often used to guide the type and

timing of salvage therapy. It is unknown whether prostate specific antigen

doubling time calculated in the ultrasensitive range (prostate specific antigen

less than 0.2 ng/ml) accurately reflects measures performed in the traditional

range (prostate specific antigen greater than 0.2 ng/ml).

MATERIALS

AND METHODS: We

studied 394 men in a national disease registry of men with prostate cancer

(CaPSURE™) who underwent radical prostatectomy, experienced biochemical

failure, and had prostate specific antigen doubling time assessed using

ultrasensitive and traditional prostate specific antigen values. Agreement

between these measurements was assessed using Cohen's kappa score.

RESULTS: Median ultrasensitive prostate specific antigen

doubling time was 11.9 months (IQR 6-29) and median traditional prostate

specific antigen doubling time was 240 months (IQR 18-240). Agreement between

ultrasensitive and traditional prostate specific antigen doubling time was

poor, with a weighted Cohen's kappa score of 0.04 (95% CI -0.02-0.10). Using a

dichotomous prostate specific antigen doubling time cutoff of 9 months, there

was a statistically significant difference between ultrasensitive and standard prostate

specific antigen doubling time (exact McNemar p <0.01). Ultrasensitive

prostate specific antigen doubling time was more or less rapid than traditional

prostate specific antigen doubling time by more than 15 months in 244 (62%) and

35 (9%) patients, respectively.

CONCLUSIONS: Agreement between prostate specific antigen

doubling time calculated using ultrasensitive vs traditional prostate specific

antigen values is poor. Ultrasensitive prostate specific antigen doubling time

is often significantly more rapid than traditional prostate specific antigen

doubling time, potentially overestimating the risk of clinical recurrence. Until the significance of ultrasensitive prostate

specific antigen doubling time is better characterized, the decision to proceed

with salvage therapy should not be based on prostate specific antigen doubling

time calculated using ultrasensitive prostate specific antigen values.

PMID:22014796 .

All the best

Prostate men need enlightening, not

frightening

Terry

Herbert - diagnosed in 1996 and

still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html

From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of Alan Meyer

Sent: Monday, 21 November 2011

4:28 PM

To: ProstateCancerSupport

Subject: RE:

Re: Don M. - Pathology Report.....

> As to PSA post-surgery: Medical Oncologist Strum often

> remarks in responses to p2p posts, if the prostate gland is

> surgically removed and all the cancer with it, then it stands

> to reason that the PSA level should be <0.01ng/ml with an

> ultrasensitive/3rd generation PSA test because without the

> prostate gland to produce PSA there should be no PSA. I would

> only suggest that there might be as much as 0.03ng/ml PSA

> post-surgical removal showing up because that much can be

> provided by other sources. ...

Don,

As far as I know, Chuck is right. A PSA of 0.07 is a little

higher than can likely be accounted for by something other than

prostate tissue. And in your case, since the prostate was

removed, in theory the only possible source of a higher than

expected PSA would be tumor cells.

However, I also agree with your doctor to wait for the next PSA

test. My reasoning is as follows:

1. It may just be conceivable that you still have a little

residual PSA from before the surgery. The body eliminates it

pretty quickly but I don't know if six weeks after surgery is

enough to have gotten rid of every bit of it.

2. It may just be conceivable that you are producing more PSA

elsewhere in the body, i.e. in the adrenal gland, than would be

normal.

3. If you wait for one more PSA test you may learn something

about the situation which you could not learn if you immediately

start ADT. The ADT will eliminate virtually all PSA and you

won't be able to tell if the PSA was falling on its own. On the

other hand, if the PSA is rising, the rate of rise may be

calculable from the difference between the two PSA tests, which

may give you some information about the aggressiveness of the

cancer (though your Gleason 10 already indicates high

aggressiveness.)

4. Having been treated myself at NIH (in the Radiation Oncology

Department), I have developed a high level of respect for their

ability. I figure if waiting is what they're recommending, they

know more than I do.

Although your cancer seems very serious, for whatever it's worth,

I think you're doing much better than most people with such

serious cancer characteristics. You've gotten two world class

treatments. Your PSA has been knocked down to almost nothing.

If you do have to go on ADT, you'll be doing it with a very, very

small amount of cancer in your body, and with a correspondingly

good chance of controlling it for a long time.

I know that you can't help but be concerned but I have hope that

you'll still be with us for many, many years.

Best of luck.

Alan