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Posted 2/13/2009 2:54 PM (GMT 0)
Hi guys,

With my patho report, I am considered a high risk patient - high risk for recurrance. I saw my doc yesterday and I asked him about some of the comments I have seen on this board.

He is Jason Engel, with the Urologic Surgeons of Washington, and the George Washington University Hospital. He is a highly regarded robotic surgeon. My wife and I call him "Top Gun." If you ever meet him, you'll understand. He says the Walsh book (from Johns Hopkins) is about the best PCa book out there, but he and his group take a very dim view of Walsh's "overly optimistic" stats. Conversely, he says that a lot of the stuff you find on the internet can be overly pessimistic.  

He has a Fellowship with GWU, and his "Fellow" doctor is writing a paper about 1,000 of Engel's patients, including at least 100 high risk guys. Hopefully this paper will be out this year, but he says it will show that his high risk guys are doing much better than the partin tables indicate, and that surgery is a very viable option for high risk patients (of course, he is a surgeon). I believe somebody said that Gleason 8 and above indicates that the cancer is probably systemic - meaning it has spread. Engel says that is crap. (Top Gun is very opinionated.) He said it would be unethical for him to operate if he believed that the cancer was systemic, because at that point it would be beyond surgical resolution.

I want to reiterate that he said that according to his numbers, if you achieve a zero at the 6 month mark, even if the cancer returns you only have a 10% chance of dying from it - regardless of age.

My wife (the PhD anatomist) told me that even after the cancer cells have broken out of the prostate capsule, they have a tendency to hang around the prostate for a while before they spread. She knows a lot about cancer at the cellular level. I asked her to write up a little blurb about that for this board. We'll see what happens.

So, I know a man hears what he wants to hear and disregards the rest - but I'm taking all of this as positive news and I wanted to pass it on to other high risk guys. It is certainly better than the tables that tell me oops - I'm supposed to be dead already.  

By the way - I also received my 9-month zero. Woo-hoo! The wife & I had our usual wild celebration - a quiet glass of Guiness and a plate of hot avocado & spinach dip at the "Froggy Bottom" which we walk to after each visit to see Dr. Engel.

kcragman 

Posted 2/13/2009 3:48 PM (GMT 0)
Congrats on the zero. May you have a lifetime of them...
Posted 2/13/2009 5:21 PM (GMT 0)
Great news on the zero.

I agree the Partin tables are outdated and do not take into account adjuvant therapies. These tables are only for consideration after biopsy and have been complied over many years of patients surgical outcomes at Johns Hopkins. The fact is that surgical techniques have changed. By that I don't refer to modality(open vs. robotic for example), but rather what is removed and procedurally how. In addition, grade does not preclude progression. A gleason 10 can be surgically removed, confined to the prostate, and never progresses. It is less likely, but it not set in stone either.

But the Partin tables may show a high degree of probability that the cancer has spread outside the capsule, but they don't say that surgical removal combined with radiation could still irradicate it. But there is a lot of studies that show this is true...

My message for the G8 and above guys is don't rush off to the Lupron injections unless it is confirmed to be progressed.

Tony
Posted 2/13/2009 8:14 PM (GMT 0)
kcragman,
I really liked your post. I like the positive spin on areas that I think we are all concerned about. I have often wondered about that partin tables, and how up to date they were, they can make even a positive attitude turn negative if you take it all literally. sounds like a top notch doctor you are talking about, love those kinds of stories. thanks, you brightened up my day for sure

david in sc
Posted 2/13/2009 8:30 PM (GMT 0)
Hey Krag thanks for the post. I will seek the positive in everything so this is refreshing. It is easy for people to get caught up in the negatives of what we read on the internet.
I would like to ask the group, it seems as though this information is if the cancer is contained. What about if it has spread as in my case? What then is the probabilities. Are we back to the Partin tables?
As self appointmented president of the zero club, WELCOME. Please stay for years to come.

peace and grace
Dale
Posted 2/13/2009 9:38 PM (GMT 0)

Dr Engle was my urologist back in the late 90's when I lived in DC. I found him to be excellent. He is also a good golfer.

Sam

  

Posted 2/13/2009 10:43 PM (GMT 0)
Dear Krag, Thanks very much for this positive post. We have been through the wringer and Pete just had his PSA it is up to 0.7 ..Last month it was 0.6...the month before 0.5 This after radiation, seeds, and salvage surgery....We will wait and see what happens...meantime, we are enjoying the new hip replacement last month which is rendering Pete Pain Free! So that is good. Thanks again for a very positive post.... Diane
Posted 2/14/2009 12:00 AM (GMT 0)
KCragman,
First congratulations on you zeros and hope that it will stay there. For me, your news gives hope since I'm one of those high risk cases. I hope to have good results like yours.
Posted 2/14/2009 3:32 AM (GMT 0)
Thanks for all the "positive" responses. I am happy to pass on the tid-bits I pick up, AND I threw in some Simon & Garfunkel lyrics.

So there you have it - PCa info and S&G lyrics in the same email - a feat previously considered impossible, but I do it because I care.

Zeros for everybody!
kcragman
Posted 2/14/2009 4:02 AM (GMT 0)

kcragman:  your entry was a breath of fresh air.  We are also from the dc area (many years ago, we lived in Foggy Bottom, but I don't know the restaurant you mentioned) and my husband was treated at Hopkins in September 2008,  PSA jumped from .7 to 1.4 in a year, Gleason 8 biopsy, upgraded to Gleason 9 after open radical prostatectomy, negative margins, negative vesicles, negative lymph nodes, but there was some EPE necessitating removal of nerves on one side.  PT3A.   First PSA after surgery was .1 which the doctor said was as low as this particular test went.  Waiting to take the second 6 month psa in a few weeks.  

We are anxious -- keep waiting for the other shoe to drop.  The surgeon, who is also an oncologist, does not paint either a rosy picture or a gloomy one.  He says Gleason 9 is bad cancer and we'll just have to wait and see.    I don't want anyone to offer us false hope, but it would be nice to get some encouraging news once in a while, which is why I was so interested in your post.  There's just not much encouraging out there or those in the high risk group.  

By the way, we saw two surgeons before we selected Hopkins and both said that surgery for my husband's Gleason 8 was the ONLY option available to us.  The robotics guy (the one we didn't pick) said you don't go into a gunfight with a knife - you go into it with everything you've got and that is surgery.  He was actually much more confident than the open surgeon we ultimately chose - in response to our question as to whether surgery "could, might or should" result in a cure, the robotic guy's response was "It WILL result in a cure."  Our open surgeon, who is awesome and to whom I will be forever grateful no matter what happens, was much more tempered when answering the same question.  His response, with a small smile: "I like to think I can cure all my patients."  Go figure.

I was a bit surprised about your doc's comment that Walsh's statistics are overly optimistic.  Perhaps they are optimistic for the low risk Gleason 6 patients, but for Gleason 8-10 patients, Walsh said there is only a 40% chance of non recurrence after surgery.  That does not instill confidence in me, but someone has to be in the 40% group, right?

Anyway, it's nice to hear about doctors out there who are expressing encouraging words to their high risk patients.  Thank you for sharing that.

Posted 2/14/2009 1:30 PM (GMT 0)
Keep calm:

Engel is an uber-confident guy also, but he's never said surgery WILL result in a cure. He is extremely data-oriented, pragmatic, and does not sugar-coat anything. But he tells me almost every time I go that Walsh does not do (or does not do many) high risk guys, and in that category his numbers are better than Walsh's. (We are also talking robotic surgery vs. open surgery I believe.) He also tells me to stop reading all the "crap" on the internet (i.e., don't scare yourself to death with statistics), and to not worry about anything as long as I have negative margins and zero PSA.

It may be of interest to you to go back and read a string I started on 6/26/08 titled "Incontinence Trial & Some News." We got into a discussion of Walsh there.

Yes, his comment 3 months ago about the zero PSA at the 6 month mark meaning a 10% chance of cancer mortality was a HUGE moment for my medical science wife. (Me? I like to stay blissfully relatively un-informed, so it was no surprise to me. I'm going to live forever, right?) His comment was based on his statistics, and I certainly hope that means other doctors are experiencing the same thing.

I wish all the best to you & your husband. Please keep us posted.

kcragman
Posted 2/14/2009 2:00 PM (GMT 0)
kcragman, I have been waiting on your 9 months report. I am happy things are going great. I had a good report too. Your report on the 6 month stat made me feel good. I too am high risk and consider myself very luck!

Take care. Are you going to be back coaching soccer this year?
Posted 2/14/2009 2:20 PM (GMT 0)
Always love dropping by to see those Zeros. And an excellent post! We became high risk after our path reading and several here have followed us as we first were facing up to a 50% rate of return to now being in the same ranks as those who had a clean report, having successfully reached the magic 2-year mark with undetectables.

What I want to throw into the mix is that a lot of things can happen as that prostate gland is being removed. It can get squished, bruised, etc. even in the best of circumstances. That can lead to a pathology report that errs on the side of caution (and more worry) because the interpreter can't "be sure."

It's well worth asking those particulars about a report. And - as Tony said - you don't necessarily have to race off for further treatments unless circumstances warrant it specifically.
Posted 2/14/2009 5:40 PM (GMT 0)
Rob2 - Good to hear from you, and good to hear you are progressing well.

Yes, I am coaching again. This will be my 22nd consecutive season of girls' rec league soccer (2 seasons per year), and 25th season over 16 years. As the coordinator for the U16s and and U19s, I am building the teams now. We'll have our league formation meeting in mid-March, and then we'll kick off in mid-April, which is late for us. Not sure why.

But I love it because it keeps me young. For some guys, it's the smell of fresh mown grass, the pop of a ball in a glove, and the crack of a bat. For me, nothing beats the sound of a gaggle of girls laughing and jabbering non-stop as they jog a lap around the field. It means spring!

Soccer on!
kcragman
Posted 2/14/2009 6:18 PM (GMT 0)
Thanks Krag for an informative post and congrats to you on the 0.

Scott
Posted 2/14/2009 9:24 PM (GMT 0)
kcragman, very informative post. Thanks and congratulations on the zero.
Posted 2/15/2009 1:05 AM (GMT 0)
Hi

Great news on the zero. Hope you have a lifetime of them

Mika
Posted 2/19/2009 7:34 PM (GMT 0)

Kcragman, this is an interesting post. Your comment about the six month PSA test got me thinking about my six month PSA test which is coming up the first week in March. It's taken on an entirely new meaning.

This is based on your doctor's statement that a zero PSA at six month means there're only a 10% chance of dying from PC -regardless of age. I'm interpreting zero to mean undetectable. I'm only 44 yrs old and would like to hang around for a long while for my own personal girl's soccer team (three daughters) I'm gonna have all kind of stress over this next PSA test. But I thank you for that info. Good stuff.

Posted 2/21/2009 2:45 AM (GMT 0)
JerseyG:

My guy said that was based on his own stats, so I hope other doctors are having the same results. And yes, zero means undetectable. I think most of us actually get .1's or .4's which are as low as the testers will go - which means undetectable.

I see you are a T2 and Gleason 6, so you started in a better category than I did. Given that plus negative margins, I would think you should be in pretty good shape.

Let us know how your 6-month check up goes, and I certainly wish you all the best.
kcragman
Posted 5/17/2009 12:11 PM (GMT 0)
I am bumping this up for any high risk guys who may have missed it, or just recently joined.

kcragman
Posted 5/17/2009 12:33 PM (GMT 0)
Congrats on another Zero and thank you for your informative post. Here's wishing you a lifetime of Big Fat Zero's!

Ralph
Posted 5/18/2009 7:41 PM (GMT 0)
Great post! Very refreshing to come back to after a weekend away! Congrats on your zero and thanks again for sharing!
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