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Old 01-26-2008, 04:43 AM   #1
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richarda123 HB User
Just Diagnosed

Diagnosed this week with PC: age 55, psa 3.02, gleason 8, and something about 15% and 25%; don't know. Had some kind of 30 minute scan to check for cancer in the body/bones. Meet next week with a new Dr., I guess to talk of staging...?

Read a lot so far; kind of a glass-half-empty kind of person and am dismayed about the gleason 8 ramifications. Urologist said they will likely remove the prostate and start radiation, but I've seen online where a lot of hospitals will not do an rp on gleason 8 simply because of its aggresiveness. I guess gleason 8 people don't last a long time. The urologist said with a psa of 3 the cancer has unlikely left the prostate. At the onset I felt pretty good; go in, remove the prostate: cancer removed in one chunk and that's the end of it. But the more I read, the less optomistic I become ... cancer finds an early exit from the prostate through the nerves.... The percentages look less than encouraging. I'm only guessing but I suspect body scans for cancer can miss a lot.

Urologist said they would remove the prostate with the DaVinci robot; but that's been here for only a year or so: lots of newspaper/TV ads. One of his colleques has done 20 and he didn't know of the other surgeons. With a gleason 8 maybe the newness is something to be considered?

thanks for listening

 
Old 01-26-2008, 06:47 AM   #2
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daff HB User
Re: Just Diagnosed

Quote:
Originally Posted by richarda123 View Post
Diagnosed this week with PC: age 55, psa 3.02, gleason 8, and something about 15% and 25%; don't know. Had some kind of 30 minute scan to check for cancer in the body/bones. Meet next week with a new Dr., I guess to talk of staging...?

Read a lot so far; kind of a glass-half-empty kind of person and am dismayed about the gleason 8 ramifications. Urologist said they will likely remove the prostate and start radiation, but I've seen online where a lot of hospitals will not do an rp on gleason 8 simply because of its aggresiveness. I guess gleason 8 people don't last a long time. The urologist said with a psa of 3 the cancer has unlikely left the prostate. At the onset I felt pretty good; go in, remove the prostate: cancer removed in one chunk and that's the end of it. But the more I read, the less optomistic I become ... cancer finds an early exit from the prostate through the nerves.... The percentages look less than encouraging. I'm only guessing but I suspect body scans for cancer can miss a lot.

Urologist said they would remove the prostate with the DaVinci robot; but that's been here for only a year or so: lots of newspaper/TV ads. One of his colleques has done 20 and he didn't know of the other surgeons. With a gleason 8 maybe the newness is something to be considered?

thanks for listening
I just responded to your other post, but can add a couple things here.

The 15% and 25% probably refer to the percentage of the biopsy sample that tested positive in those particular cores. One thing that should help you feel more optimistic is looking at the nomogram for your specific situation-
takes age, Gleason score, psa etc into account. If you do a web search for
Sloan Kettering nomogram, you'll find it. You'll probably see that you'll have a greater than 80% chance of a very good outcome for years and years.

 
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Old 01-26-2008, 08:01 AM   #3
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able5 HB User
Re: Just Diagnosed

I'll post my comments on your "other" thread...

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robotic LRP; Jan2007

Last edited by able5; 01-26-2008 at 09:41 AM.

 
Old 01-26-2008, 02:34 PM   #4
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Re: Just Diagnosed

Quote:
Originally Posted by richarda123 View Post
... Urologist said they would remove the prostate with the DaVinci robot; but that's been here for only a year or so: lots of newspaper/TV ads. One of his colleques has done 20 and he didn't know of the other surgeons. With a gleason 8 maybe the newness is something to be considered?
Welcome to our club! Sorry you had to join.

You've gotten some excellent comments / advice from others, so I'm going to limit my comments to the above quote. I would suggest you find a surgeon that is competent in both robotic and open RP's, in case he has to convert from robotic to open RP for some reason. Competent, to me, means that he has done hundreds of RP's of each kind and has obtained good results with both continence and ED.

You may want to consider traveling elsewhere for your surgery. Let the docs in Appleton learn to use their robot on someone else. You can use the Intuitive Surgical website (they make the da Vinci robot) to find docs in the area of your choosing. (They show 13 in the whole state of Wisconsin.) Or, you can search this forum for names of top doctors all over the country. A few hundred dollars spent on travel and hotels could buy you a better surgical outcome.

Best of luck!

 
Old 01-26-2008, 02:49 PM   #5
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Re: Just Diagnosed

Richard,

I'll intersperse comments in green. Jim


Quote:
Originally Posted by richarda123 View Post
Diagnosed this week with PC: age 55, psa 3.02, gleason 8, and something about 15% and 25%; don't know. Had some kind of 30 minute scan to check for cancer in the body/bones. Meet next week with a new Dr., I guess to talk of staging...?

You have a right to all your written medical data, and that includes your doctor's notes of your case. He should be glad to give all of that to you. Be sure to get it, because it is difficult at first when we know so little, and it enables us to communicate accurately with others who can help, including other physicians of course.

In your other post I recommended two books, one of which, "A Primer on Prostate Cancer -- The Empowered Patient's Guide," has a great set of forms for recording and tracking your data. I hope you get that book ASAP, and check to see if your biopsy report has all the data in the form. (I've found that a Pilot Precise V5 Extra Fine Point pen is best for recording notes without smearing, but I still have to blot what I write with tissue.) If not, call your doctor and/or the pathologist and see if you can get the additional data. It would be important to do that soon while the information is probably still freshly at hand and in their minds.

Also, the Primer is packed with information on all the diagnostic techniques as well as great illustrations, graphics and photos of things like bone scan films and the output from other scans and techniques. It has many good appendices, and has a very good index. There are some other excellent books, but many of us consider this the best for general orientation. The Walsh book you have is great for surgery. Dr. Peter Scardino from Memorial Sloan Kettering, another premier surgeon, has also written a book that would give good insights into surgery. As you have already surmised, it is possible that surgery would not help you but would just burden you with side effects. (Johns Hopkins looked at my case and rejected my attempt to get on their surgery schedule. I was stunned and deeply disappointed at the time, but now I am grateful.)

Also, the Primer stresses the importance of making sure your biopsy cores are reviewed by a pathologist who is expert in prostate cancer. Many are not; they are general pathologists who review all kinds of medical samples, including biopsies for all kinds of cancers from children, adults, men, and women for various stages of the cancer. You can see why having a specialist pathologist review the samples is important. My impression is that most insurance companies will readily cover this kind of second opinion. Find out if the pathologist who did your work was a generalist or a prostate cancer specialist. If the former, I can't urge you strongly enough to insist on a second opinion by an expert, even if you have to pay a few hundred dollars more out of your own pocket. My own Gleason Score was upgraded from a 3+4=7 to a 4+3=7, which is a fairly important difference. Quite often experts will change the grade, and when they do, it's often an increase, but of course the reverse happens fairly often too. The Gleason is so critically important that it is vital to get it right. Of course, it's quite possible that the samples making up the Gleason are not typical of the overall tumor picture in the prostate, but it's the best we have to go on unless an RP is performed, enabling a far more complete biopsy. The Primer has information on access to a list of expert pathologists and expert pathology companies known to the authors on page F6.


Read a lot so far; kind of a glass-half-empty kind of person and am dismayed about the gleason 8 ramifications. Urologist said they will likely remove the prostate and start radiation, but I've seen online where a lot of hospitals will not do an rp on gleason 8 simply because of its aggresiveness.

Without doubt, the absolutely critical question for a case like yours is: is the cancer confined to the prostate, with no spread? That kind of sounds repetitive, but the main tumor can be confined, but with a small colony already started at a distance. As you are already learning, that is a strong concern with a Gleason 8 to 10 cancer. In fact, even men with low-risk case characteristics often have prostate cancer cells that are in the blood and have even travelled to the bone. In fact, in one study of low-risk men preparing for RPs, bone marrow was sampled, and it turned out that a surprising 57% had prostate cancer cells in the bone if one side was checked, and that a stunning 74% had prostate cancer cells in the bone if both sides were checked (Melchoir, 1997). The percent of early spread to the blood in low-risk men is also surprisingly high. The very good news for most men is that, despite this apparent early spread, most of these cells in the blood and bone are not viable - they apparently either die or go dormant, but they do not cause trouble (we think). However, the thinking is that in high Gleason cases, even Gleason 7 cases, these wayward cells are more likely to survive, grow and spread.

Many doctors seem to take the approach that they do not want to try to determine spread in advance, but rather will do their local therapy, and if it doesn't work, they will conclude that there was spread before the therapy was performed and go on to the next therapy. That's just peachy except for the poor patient who must bear the burden of side effects and complications with little gained in return, though I can see where you can make an argument for that approach for low-risk cases. The doctors I admire are the ones that will do their best to rule out (or rule in) spread in advance for a patient with a challenging case.

You probably have already had a bone scan, which is a routine check for spread. You may have also had a CT scan, which isn't very useful, because it takes a fairly large tumor to be detectable, but it is a good idea when your case has high risk characteristics like a Gleason 8. You can get the blood tested for PC cells, and also the bone marrow, though the latter is painful, from what I've heard. It wouldn't make sense if you were going straight to hormonal blockade and/or a course of chemo therapy, but it would be a reasonable option to me (as a layman, no enrolled medical education) if you were trying to determine whether or not surgery or radiation were appropriate.

There are some simple blood tests, which are cheap and convenient, that might forestall the need for more sophisticated scans. These are especially valuable for Gleason Score 8 to 10 patients, as cancer cells involving such high Gleasons are often so broken down that they no longer can produce much PSA, making PSA a less reliable indicator of the status of the cancer. Those other tests, known as "markers" of the cancer, are PAP, CEA, NSE and CGA for Prostatic Acid Phosphatase, Carinoembryonic Antigen, Neuron Specific Enolase, and Chromogranin Alpha. It is very good to have these tests done now, before treatment, so you have a baseline. It's also very good to get a testosterone test. All of these give clues for decision making. For instance, if the PAP is quite elevated, it's a powerful indicator that surgery will fail to cure, and it also casts doubt on radiation. Other markers and genes such as ploidy status, bcl-2, VEGF, p53, can also clarify the picture. (These are described in the Primer and in other sources.) If one or more of these tests casts doubt on the likely success of local therapy, especially if they are consistent, then you can save yourself the burden and expense of local therapy and go straight to system wide (body wide) therapy.

Another option is the Combidex scan, also known as USPIO or Sinerem, a high resolution MRI scan with a special contrast agent. It is now emerging as a tool, and in expert hands appears to be excellent at revealing metastases in lymph nodes throughout the body; in this role, it appears to be far superior to surgical sampling. Unfortunately, practitioners in the US have had trouble mastering the technique, and an FDA advisory panel decided not to approve it yet. A doctor in the Netherlands is considered the leading expert, and some US doctors refer patients to him.

Another option is the fusion ProstaScint scan, which is quite sensitive for prostate cancer tumors in soft tissue throughout the body. I had that done, and the surprisingly negative result opened the door for me to consider radiation. I came close to going that route, but chose to go straight to triple hormonal blockade instead.


I guess gleason 8 people don't last a long time. The urologist said with a psa of 3 the cancer has unlikely left the prostate.

Not necessarily to your first sentence, and the urologist's thinking is understandable. However, I wonder if he has considered that high Gleason cancers usually underproduce PSA? The Primer explains a formula for calculating tumor volume based on PSA, Gleason and the size of the prostate. It can help address this issue. For example, a Gleason Score 8 tumor typically leaks about half the PSA as a Gleason Score 6 tumor.

A very highly respected medical oncologist once asked a group of survivors if they thought cryo was appropriate for a Gleason Score 8 patient with a clearly confined tumor. His answer was yes. If it's clearly confined, getting rid of such a tumor before it can grow and spread further is a sound approach. And cryo is one of the techniques that is not sensitive to Gleason Score, as I understand it: it just obliterates whatever is within it's freezing zone. In contrast, radiation may not kill all of a very aggressive tumor even when it is in the zone; for instance, radiation has a poor record with Gleason 9 patients.

Some Gleason Score 8 patients, even with systemic cancer, do well. But it's important to get appropriate treatment.


At the onset I felt pretty good; go in, remove the prostate: cancer removed in one chunk and that's the end of it. But the more I read, the less optomistic I become ... cancer finds an early exit from the prostate through the nerves.... The percentages look less than encouraging. I'm only guessing but I suspect body scans for cancer can miss a lot.

True. A bone scan is fairly sensitive, but it takes 10% of an affected area to be cancerous before it will light up a bone scan. As noted above, CT scans take a pretty big tumor before they will light up.

Urologist said they would remove the prostate with the DaVinci robot; but that's been here for only a year or so: lots of newspaper/TV ads. One of his colleques has done 20 and he didn't know of the other surgeons. With a gleason 8 maybe the newness is something to be considered?

You bet it is! I would also be extremely wary of a surgeon doing DaVinci robot work with only 20 or so under his belt, unless he were under the close supervision of an expert. You've got a good head on your shoulders! Keep using it!

thanks for listening
You're welcome. That's what we are all here for. Hang in there.

Jim

Last edited by IADT3since2000; 01-26-2008 at 06:59 PM. Reason: Grammar.

 
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