Gleason 9 --- What to do?

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herefishy
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 1/30/2008 10:32 AM (GMT -7)   

I was diagnosed in Dec with PCa. I am 68 yrs old and had 10 years of up and down psa numbers treated as prostatitis. At biopsy time my psa was 8 and Gleason was 8. Seven out of seven cores on the left lobe were 90% involved with tumor while five out five on the right lobe were negative; it was staged T2a by my Urologist and he recommended radiation and ADT. Bone scan and CT scan was negative.

I went to an Oncologist a friend recommended since I couldn't get in to see a Radiation Oncologist for a month. He gave me a 3 month shot of Lupron and ordered a PET scan which showed PCa confined to left lobe. He suggested I look at proton therapy. I called MD Anderson and got a immediate refusal because they do not take anyone with a Gleason higher than 7. I contacted Loma Linda and was advised that they were running behind schedule and would see if I could be accepted.

I then saw the Radiation Oncologist here locally. He gave me an exam and after the DRE, he said the prostate was rock hard on the left lobe and I had T4 high risk PCa. He said in March he would start radiation of the pelvic area, lymph nodes and prostate along with Vantas implants. He also told me that there was not a very good chance of keeping my psa down for 2 years. He said he would start chemo in 1 ½ to 2 years and according to the Roach study that the 5 year prognosis was not favorable. He said Pet scans weren't used for PCa and when I mentioned proton therapy he advised me that I had no idea about the seriousness of my PCa.

Thee following week Loma Linda called and said I was scheduled for a consultation on March 11. They advised me to expect proton, photon and ADT. I don't see my local Oncologist for a month.

The review of my biopsy came back yesterday from Mayo and was reclassified as a Gleason 9(5+4).

Any advice is appreciated.

Bob E

Post Edited (herefishy) : 1/30/2008 10:54:08 AM (GMT-7)


bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 1/30/2008 1:29 PM (GMT -7)   

tongue  Hi ~ Bob & Loved Ones ,

 

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bluebird
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   Posted 1/30/2008 1:32 PM (GMT -7)   

  tongue     Hey ~ Bob & Loved Ones,

 

A   Special   Warm Welcome  to  You!   

 

I know we can “all” make “Your Journey” smoother ~ just by being here for you!  

Thank you for reaching out!!! 

 

You’ve just made your own journey a lot smoother.  There are a lot of Helping Hands here… and just by reaching out like you did ~ you will have a much easier time.  We’ve been where you are now…. Knowing you aren’t alone… makes a big difference in psyche and spirit.

 

We will always be here for you… This is truly a great forum!!! ~ You have joined! You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey with you!  Please take time to follow the link in your Welcome Message above… it will help to ease some of the unknowns…

 

It helps “all of us” ~ to help you ~ if we know where you are on your path.

So ~ Please stay with us and take our hand when you need it! 

Keep posting.... OKAY!!   

  

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YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

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Our thoughts and prayers will be with you as you continue to move forward in your search for answers… Stay Close!

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v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 1/30/2008 4:19 PM (GMT 0)   
Hi Bob
 
Sorry to hear your story but you have come to a great place for information.  I am relatively new here as I was only recently diagnosed with PCa and still going through the initial stages of testing (CT and Bone Scan and xrays).
 
Your comment that MD Anderson turned you down because of a Gleason score of 9 really caught my eye because I have my initial appointment there on 2/12/08 and my urologist told me I had a Gleason score of 9 with a stage of T1C.
 
I want to welcome you and say you will be in my prayers tonight.  Hold on to your hope and keep smiling yeah
 
 
 

Richard & Debbie
The Shores of Toledo Bend Lake Louisiana
PSA 11/08 was 4.9 PSA 12/08 was 7.7
Biospy 1/10/08 positive for high grade Cancer but no Nodes noted
Gleason score 9, Stage T1C
Bone scan negative with additional exrays ribs and pelvic
Referred to M.D. Anderson, Houston, TX
Turn Stumbling Blocks into Steping Stones


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 1/30/2008 7:54 PM (GMT -7)   
Bob,
Welcome to Healing Well and so sorry that you are here...that being said you're at a great forum.
You're in a tough situation but getting opinions from doctors who practice different methods of treatment is a good thing. But remember you have to be your own advocate, after all who cares more about your outcome than YOU!

For your research purposes go to the second topic on the PC home page "Prostate Cancer Resources and Direct Links to Sites, Videos, Books, etc. to help with your research!" you'll find so many resources that will be of help to you.

There are all stages of pc on this forum - I know that others will post to you. You can ask anything here.

All the best to you,
Susan
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1
11/27/07: PSA 0.1


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 1/30/2008 9:18 PM (GMT -7)   
smilingoldcoot said...
Your comment that MD Anderson turned you down because of a Gleason score of 9 really caught my eye because I have my initial appointment there on 2/12/08 and my urologist told me I had a Gleason score of 9 with a stage of T1C.
 
 

He was turned down for Proton treatment because of the Gleason score, not that they won't treat at all. Their Proton program is new and they are cherry picking patients to improve the success rate. Loma Linda is older and more established and as such they will accept a lot of patients that MD won't. I had contact with 4 or 5 men at LLUMC that tried to get treated at MD Anderson. They also will reject out of hand a high PSA value 10+ and over as the data shows less long term success with those patients as well.
 
Bob, if I were you I would find a new radiation oncologist or go back to the one who first treated you. There is no way in the world that he can stage your cancer with a DRE. Experts in the field of pathology will disagree on the staging of marginal samples. I sure as hell wouldn't let him treat me with radiation or hormones or chemo??!! until I had several other opinions about your disease. You need to be your own advocate. He sounds like just the sort of egotistical know-it-all prick you should avoid and he was pretty negative to boot, which is not what you need at this time. Of course he pooh-poohs Protons, he won't be paid if you choose that modality. The truth is that if Loma Linda will accept you as a patient, they believe that they can cure you and will convince you of the same.
 
If you would like to discuss the Loma Linda experience I encourage you to email me using the button below my name on the left of the page.


54 years old

PSA 5.6 on 3/20/07

DRE: Negative

Biopsy on 4/20/07 

Results 4/25/07:

3 out of 12 cores positive, 2 on the right lobe with 5% adenocarcinoma Gleason 3+3, 1 on the left lobe 10% adenocarcinoma Gleason 3+4, overall Gleason graded 7 Cancer T1C.  After web research discovered Proton Beam Therapy and called Loma Linda. Completed consultation with Dr. Luu on 7/5/2007 and started treatment at Loma Linda on 7/26/07. Completed treatment 44 on 9/28/07. 0 treatments remain. Side Effects remain minimal. 1st PSA result on January 28th is 1.1.

Post Edited (Jayadub) : 1/30/2008 9:41:27 PM (GMT-7)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 1/30/2008 11:26 PM (GMT -7)   

Dear Bob,

Welcome to the forum... a place of information and caring. 

Please take advantage of the links at the top of the forum threads as bluebird has indicated in her reply.  I think you'll find some comfort in the information posted regarding diagnosis and treatment options. 

Please consider yourself as welcomed by all of us as if you've always been here.  Share your thoughts and feelings as you feel appropriate and we'll be here to respond.

Kind regards,

Barry


"Idaho" ~ Barry

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

1st PSA  9/11/2007   <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

My web site: http://pca-info.blogspot.com


herefishy
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 1/31/2008 10:37 AM (GMT -7)   

Thanks for all the replies. I am looking at all the links and the wealth of information. I will be posting more later. Jayadub-- I sent you an email.

Bob


Bob & Karen in NM; diagnosed 12/10/07; PSA 8; Gleason 8;
Gleason updated to 9(5+4); right lobe benign tissue with atrophy; Left lobe, Adenocarcinoma 90%(7 of 7 cores), perineural invasion but no extraprostatic extension; Bone scan, CT scan, negative,  PET scan, confined to left lobe; 1/7/08 3 mo shot Lupron; awaiting consultation Loma Linda 3/11/08


Jayadub
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 1/31/2008 1:25 PM (GMT -7)   
Bob I have replied to your email. We will be in contact soon.
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