hope needed from gleason 8 and above

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oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 4/29/2007 4:09 PM (GMT -7)   
I know I am really new to this--just a couple of weeks of research--and then the news

Gleason 8 (4+4)--8 of 12 samples cancerous--up to 70% PTI--perineural invasion--

I know this is really not good news. I have been reading the postings and find so few people with these numbers that I find myself getting really worried. I think I need to hear some real extreme success stories from some high risk cancer survivors.
I know I am scheduled for surgery in a few weeks and the doctor wanted to save radiation for later--and he said that if he finds it in the lymph node he will stop surgery and jump to radiation.
I wonder if he is planning on that. He is trained in cryogenic technique also but thought I would be better off with surgery.
I know I saw one of the regular posting people had a Gleason at 10 and is currently cancer free.
I would really like hearing from him as well as others who can get me out of my "gloom and doom" funk.
Thanks

aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 4/29/2007 4:59 PM (GMT -7)   

The website www.yananow.net has stories from men with various stage PC who have used all the treatment options.

Look under mentors experiences. A friend (Ian) who is on hormone therapy has a posting there.

I was surprised to read some of the case studies in the book by Dr Myers I mentioned previously, for example one of his current patients was diagnosed in 2000 with a PSA of 3656 and Gleason score of 8.

John

 


oldfordlover
Regular Member


Date Joined Apr 2007
Total Posts : 52
   Posted 4/29/2007 9:03 PM (GMT -7)   
John --
Thanks so much for sending me to the yananow website.
it really made the rest of my day--seeing all the survivor gives me so much hope --and I really needed it

After reading, I finally made my way to the jokes and had a lot of laughs
Thanks again

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 4/30/2007 3:23 AM (GMT -7)   

Ford Lover,

My first car was a 1949 Flathead 8.....

It will help if you modify your signature (in control panel) with your age and any other pertinent information as those reading your posts might not see where you have given your scores.

Here's hoping you are pleasantly surprised with good news of containment.  Regardless, you are among friends here.

CCedar


~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Confined:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?


sween76
Regular Member


Date Joined Feb 2007
Total Posts : 60
   Posted 4/30/2007 5:19 AM (GMT -7)   
Hello Oldfordlover: Sorry for your news. Research, research, research is what I did. Unfortunately there is no "magic answer" so you need to do the research and make a decision that YOU are comfortable with. Not sure where you are located but I was not comfortable with my local medical situation. I was only comfortable with the big medical centers that have probably seen your situation many, many,times. Hopkins, Cleveland Clinic, Mayo are three that rate very high in Urology. Once I made my medical decision, I was very much relieved. Keep doing the research and then make a decision. Given your data, I would not wait very long before making a decision.  Ed

Age: 63
PSA 2.62, Negative DRE
Biopsy: Gleason 3,3
Stage T1c
Prostate 71 grams 
Biopsy: Cancer 5% in one of twelve modules
DaVinci April 16, 2007, Cathter Removed Day 8
Tumor Confined To Prostate,  Gleason 3,3
Surgical Margins and Seminal Vesicles Are Negative for Tumor


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 4/30/2007 6:19 AM (GMT -7)   
oldfordlover,
 
I'm at 11 months post-surgury, so I'm not sure I really count as a survivor.... but my initial numbers were alot worse than most posters here (pretty scary), so I have a sense of how you feel.  I'll pass along what I found out on my journey....
 
I had 8 or 12 cores positive and the ones that were positive had A LOT of cancer in them...initial Gleason was 7 (4+3).  My pre-surgery PSA was 39 --- and I was 45 at the time.
 
The good news is your doctor has not seen anything yet to disqualify you form surgery --- I'm going to assume your bone scan and CT were clear...  They only operate if they think you're CURABLE. 
 
Assuming they don't find any lympth node involvement (assume really strongly they WON'T)....  They'll take out your prostate and then you see what you're REALLY dealing with from the pathology report.  Your Gleason might be downgraded (mine was... to 3+4),  you'll see if your seminal vessels are involved (mine weren't), and find out if you have positive margins (I had a positive margin).
 
This will give you and your docs an idea of what further treatment you'll consider.  After that, your next milestone will be post-surg PSA testing.  If you're high risk for recurrence (we both are), they might want to start doing PSA checks within the first month.   
 
Then the question becomes what kind of further treatment will you get, at what level of PSA will you want to do additional treatment (radiation, hormone therapy or BOTH --- I had BOTH.)   
 
Between my diagnosis and surgery I began to think I was going to die of this within a year or two.  Now I don't think that.  I've talked to long term survivors who have been considered "chronic" for 10 - 15 years.  I'm thinking if the docs can get me 5 - 10 years without a massive progression, there's a good chance a better curative treatment will be found.  And, while I had a lot of cancer in me, for all I know, I might be cured right now! 
 
ANother inspiring story is Mike Milken -- the junk-bond guy who founded the Prostate Cancer Foundation.   Chceck out his story on their web page.
 
Bottom line here is: you're not going to find out overnight what you're prognosis really is... its a series of "baby steps"... and a lot of waiting.  You get uesed to it after a while.....just don't forget to enjoy life while you're waiting!
 
HANG IN THERE...if you're a man of faith, keep it - it works!
 
 
 
   
Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007


BenEcho10
Regular Member


Date Joined Jan 2007
Total Posts : 133
   Posted 5/1/2007 7:03 PM (GMT -7)   
Hi Ford Lover,

I suspect that I am the Gleason 10 that you mentioned. As you have already figured out, Gleason 8 and above indicates a more aggressive cancer and thus a higher liklihood (but by no means a certainty) that the cancer has penetrated the prostate capsule.

That was the case for me. I had positive margins but the cancer had not spread to the seminal vesicles or lymph nodes which was good news. I had someone describe as the cancer escaped the prostate but it didn't seem to have gone anywere.

A high Gleason is a negative factor but it does not mean that you shouldn't be optimistic. I am now six months post surgery. I have had two PSAs (the last was three months ago - due for another in two weeks) and both were 0.00.

The key thing is to move on with your surgery (or whatever treatment you and doctor select) and see if you can get all the cancer out. If you do, great. If some is left, then move on to dealing with that. At least the surgery got a great deal of cancer out.

Good luck.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Excised widely including nerve bundles. Surgical pathology Gleason 10. Stage T3a (positive margin at apex.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00. 02/12/07: Second post op PSA was 0.00.

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