Well, . . . just heard from my urologist about an hour ago

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SkeeterZX22v
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Date Joined Apr 2011
Total Posts : 240
   Posted 4/28/2011 9:39 AM (GMT -6)   
Just diagnosed with Gleason 6, 2 of 12 positive. That's all I know right now. I am most upset by the fact I am 61 years old, and up to now, have been in "perfect" health. Never smoked, very occasional drinker, not overweight (5'7" and 150 lbs). My "perfect" health record is now over. PSA 4.3

Had already been reading this site, as well as several others in anticipation. My initial leaning is for Proton Therapy at Bloomington, Ind., but I am going to carefully consider all options before making final decision. Would welcome to hear from anyone, but especially those who have undergone Proton Beam Therapy at Bloomington or elsewhere.

Thanks.

Steve n Dallas
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Date Joined Mar 2008
Total Posts : 4829
   Posted 4/28/2011 9:41 AM (GMT -6)   

Welcome to the site and sorry you have to be here...

Hang tight for others to come along and give you some feedback.


Moderator - Prostate Cancer
Age 56 - 5'11" 215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6
06/25/08 - Da Vinci robotic laparoscopy
05/14/09 - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.

Herophilus
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Date Joined Sep 2009
Total Posts : 662
   Posted 4/28/2011 9:55 AM (GMT -6)   

Welcome, Bummer, Best of Luck.  Lots of great info here.

Hero


Age 51 PSA 6.8
Bxy 10 of 12 Cores positive for Gleason 6. up to 75%
Robotic surg 11-02-09
Post op path. 20% neoplasm;4+3=7 Gleason
All nodes (14) and other related tissue negative for cancer
No EPE
Post op PSA x 3, all <0.01
walkbobwithjack.blogspot.com

reachout
Veteran Member


Date Joined May 2009
Total Posts : 725
   Posted 4/28/2011 9:58 AM (GMT -6)   
Sorry you got those news. On the good side, you're at a very early stage and have all of your options open. Best of luck with whatever you decide.
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 month detectable .05

Sleepless09
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Date Joined Jul 2009
Total Posts : 1267
   Posted 4/28/2011 10:17 AM (GMT -6)   
Skeeter --- sorry that this PCa is ruining that otherwise perfect health record. However, you have every reasonable expectation that between what you learn here, and in talking to your doctors, etc., that you'll come up with the appropriate treatment and in a couple of years this will just be a blip on your ongoing perfect health journey.

I hope you'll keep posting and let us know how you're doing.

I'm sorry I can't help you with your question about Proton --- no doubt others will be along who can help with that.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Ed C. (Old67)
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Date Joined Jan 2009
Total Posts : 2458
   Posted 4/28/2011 10:25 AM (GMT -6)   
Skeeter, I'm glad you found us. You are doing the right thing evaluating all the options available to you. With your Gleason 6, low PSA and only 2 cores you have a lot of time and consultation with various doctors. Good luck.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18, 21, 2 years <.008? ) undetectable
27 months: .005

Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 4/28/2011 10:48 AM (GMT -6)   
Sorry to hear you'll be joining us.
With a gleason 6, it's very possible you will maintain your perfect health.
 
I'm impressed you got the phone call from your urologist.  Mine wouldn't talk to me on the phone.  I had to schedule another appointment just to get the test results. 

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3738
   Posted 4/28/2011 10:51 AM (GMT -6)   
The GOOD news is 97% of the Gleason 6 guys live to die of something else regardless of what form of treatment they choose. The only advantage of proton over photon is, hopefully, reduced side-effects. But todays linacs are so precise, side effects have been greatly reduced.. Some will dispute even that..One thing for sure, it costs a lot more so be sure to get pre-approval from your insurance company if you decide on that method of treatment...Read a couple of books to broaden your knowledge base. Dr Walsh and Dr. Chodak have written good ones..
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3744
   Posted 4/28/2011 11:08 AM (GMT -6)   
Skeeter, you also appear to be a prime candidate for HDR monotherapy. It comes with an even better success rate than external beam radiation and with less side effects. Check the information at www.cetmc.com by Jeffrey Demanes, the HDR pioneer, at UCLA.

I had HDR, but also had IMRT as i am more advanced than you appear to be.

As was stated before, proton is not an improvement in curative treatment and may not offer any real advantage over photon IMRT, but it sure does cost a lot more and sounds sexy.

Take your time and check out everything.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010, HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.
PSA <.1 on 4-7-2011

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 4/28/2011 12:26 PM (GMT -6)   
Skeeter - Your story is much like mine, other than I could loose a few lbs. As others have said, welcome to the club that know wants to join. I probably can't be much help to your question, but for what it's worth I underwent DaVinci in Indianapolis and am recovering well.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci nerve sparing RP 10/29/10
Post op biopsy indicated bilateral Gleason 6 tumors
Continence < 1 Pad
Minor ED - 90% naturally, 98% with Cialis
6 month PSA - < 0.0

SkeeterZX22v
Regular Member


Date Joined Apr 2011
Total Posts : 240
   Posted 4/28/2011 4:29 PM (GMT -6)   
To everyone who has replied, thanks. And in case anyone was wondering, I didn't intend or mean to make light of the diagnosis by complaining about my otherwise "perfect" health. I guess that was just my way of responding to the reality of the diagnosis and the realization that "yes, it can happen to you." My wife of 32 years has had many medical problems that have required numerous hospitalizations and surgeries. I have always been the caregiver and support person. Now she gets to reciprocate. Yes, I am luck to have found it at this early stage. Gleason 6 was my hope if it came back positive, and for that I am grateful.

My family doc and my urologist are both longtime friends, so I did appreciate the telephone call. I have also spent some time today talking to my family doc as well. We'll see where it goes.

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/28/2011 4:46 PM (GMT -6)   
Glad you found us, but sorry you had to. It's wonderful to have such a fabulous forum, but it sucks to have to keep welcoming new members.  As I'm sure you know, there are many treatment options and many, many members here that can offer all kinds of support.  Let us know how we can help you in your journey to a cancer free tomorrow.
 
Doting
Father's Age DX 62 (now 65)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 0 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 2010 PSA <.02

SkeeterZX22v
Regular Member


Date Joined Apr 2011
Total Posts : 240
   Posted 5/1/2011 12:06 PM (GMT -6)   
JNF said...
Skeeter, you also appear to be a prime candidate for HDR monotherapy. It comes with an even better success rate than external beam radiation and with less side effects. Check the information at www.cetmc.com by Jeffrey Demanes, the HDR pioneer, at UCLA.
.


Hmmm, I checked that website and HDR monotherapy sounds pretty impressive. As of now I am still leaning toward PBT if my insurance will pay for it. I live in central Ky., so I am wondering if anyone knows of facilities closer to me than UCLA that does HDR monotherapy on a regular basis?

Thanks, JNF, for that info!

SkeeterZX22v
Regular Member


Date Joined Apr 2011
Total Posts : 240
   Posted 5/1/2011 1:57 PM (GMT -6)   
I do have a history of psa readings for the past several years, but I haven't gotten from my family doc yet. In general, it has been building slowly (over past 7-8 years) from 2.0 to 2.5 to 3.0 etc. Last test 18 months ago was 3.7. This February I had a 4.6, took 30 days of cipro, and tested again, the result being the 4.3. If I were a little older I might consider AS but I am a otherwise healthy 61 with some history of longevity in the family. Thus, I feel I do want to do something.
Age 61, psa 4.6, 30 days cipro, psa 4.3, biopsy 4/28/11, 2 of 12 cores positive, Gleason 6

tvwohio
Regular Member


Date Joined Sep 2010
Total Posts : 172
   Posted 5/1/2011 2:38 PM (GMT -6)   

skeeter

Welcome.  It is very overwelming when you hear the words you have PC.

First you need to slow down and weigh your options

I was Dx at 50  with PSA 6.3 and Gleason of 3 + 2 = 5

That was 10 years ago and surgery and other procedures have progressed so much that you will probably have less complications than I have had in the 10 years post.

I did not know about the forum until this last January and the guys and women have been very kind and informative.

You will do fine. 

Good Luck and Take  your time to make a decision which you and if you have a partner will be sure of.

Tom of Ohio


Gordy
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Date Joined Jun 2005
Total Posts : 528
   Posted 5/1/2011 4:12 PM (GMT -6)   
Skeeter- Dr. Timothy Chen practices at St. Clare's Hospital in Dover and Denville, NJ. I believe he taught the HDR brachytherapy procedure at one of the most prestgious teaching hospitals in New York City before practicing in New Jersey. Not too long ago (six or eight months, I believe) both ABC Network News and The Star Ledger, the largest newspaper here in Northern NJ, did stories about an incredible HDR brachy procedure he performed on a woman who was about to die from an inoperable lung tumor. I can't say enough good things about Dr. Chen as a radiation oncologist, an oncologist in general and as a caring human being.

My e-mail address is available here at HW if you would like to contact to me.

-Les

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 5/1/2011 5:47 PM (GMT -6)   
Les-Gordy glad to see you return to this forum....you are needed here and know alot of things on PCa that you can share, you are to humble in my opinion. Please jump into the discussions on other matters, I hope others noticed your back on the forum.

Keep up your works, fellow warrior!

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3744
   Posted 5/2/2011 12:39 PM (GMT -6)   
Skeeter,

There is another HDR pioneer in Detroit named Alvaro Martinez in Royal Oaks Michigan. I have to believe that there are HDR radiology oncologists and urologists in Louisville, Indianapolis, Nashville, or some area closer. Where in Kentucky do you live? My wife is from Kentucky.

I live in Atlanta and had a couple of choices for HDR. I am happy to ask my urologist and rad-onc for any referrals they can provide in your area.

Jack
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010
HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.
PSA <.1 on 4-7-2011

Architect
Regular Member


Date Joined Apr 2011
Total Posts : 43
   Posted 5/2/2011 12:52 PM (GMT -6)   
Skeeter,

Welcome the club that nobody wants a membership too. Sorry to hear about your results.

Its sounds like you've been researching already - this is good. Information has made me feel somewhat more in control (or empowered) during the short amount of time I've known that I have PC.

I've not researched your treatment option much, but have researched IU Medical Center (Indy - not Bloomington), Barnes-Jewish Hospital, and Vanderbilt because they are all within 3 hours of my home in Indiana. I've spoken with doctors (or doctors staff at each location), and felt the best about Barnes.
DX 4/26/11 (Age 36)

6/15/09 PSA 2.1
3/17/11 Lost Father to Complications of PC and Bone Cancer (Age 59)
3/30/11 PSA 2.5 & Abnormal DRE (Nodules felt) found during post-op for extracorporeal lithotripsy procedure
4/18/11 Biopsy
4/26/11 Biopsy Results = 3 of 12 Cores Positive (both lobes) with Gleason 6 (3+3)

fancy7217
New Member


Date Joined May 2011
Total Posts : 7
   Posted 5/22/2011 7:48 PM (GMT -6)   
Hi Skeeter,
Sorry to hear about your problem. I also have the same problem and was wondering if you had the proton beam treatment and why did you choose that if you did? I am still trying to choose either this or surgery? Both seem to have the same sucess rate and the same chance of getting ED. The only difference is you can have salvage radiation after surgery and you can have HDR after rediation and you can have Cryo freezing after either treatment and there is also harmon threaphy you can have after either treatment. My numbers seem to be about the same as yours Gleason 6 and PSA 10.1 only found a small amount in 2 out of 12 spec.What did you decide on?

Thanks Fancy

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3738
   Posted 5/22/2011 8:55 PM (GMT -6)   
Before you sign up for proton or any other treatment, check with your insurance company...Ask that the billing clerk gets "pre-approval" before you start treatment to avoid unpleasant surprises..
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

SkeeterZX22v
Regular Member


Date Joined Apr 2011
Total Posts : 240
   Posted 5/23/2011 3:36 AM (GMT -6)   
Well, here is where I'm at concerning my treatment choice. I have been to the Proton Therapy Center at IU in Bloomington, Indiana for a consultation. My wife and I were very impressed with the facility, and more importantly, the people. Everyone was friendly, helpful and understanding. I spent over an hour with a radiation oncologist who not only explained the proton treatment option, but my other treatment options as well, including everything from AS to surgery to brachytherapy. She explained exactly how proton therapy worked, and the possible side effects. She also insisted that if I am treated vis proton or some other form of radiation, I must first have a colonoscopy (otherwise scheduled for next year) and she also wanted a second opinion as to the pathology report. Very thorough.

Insurance. I am insured via the Commonwealth of Kentucky's self-insurance program for state employees, which is administered by Humana. I am already in the appeal stage, which is being handled by the Proton Center. They recently had another person with the same insurance and were successful on appeal getting him approved. I am hopeful that I will be approved also. I do have a back-up plan of being treated with "conventional" radiation, i.e. IMRT/IGRT. Although I found the idea of HDR brachytherapy appealing, my doctors advised against it due to a history of mild urinary problems that they felt would be exacerbated by brachytherapy.

As I have said before, I do not want to do surgery. I am scared of the potential side effects, including the possibility of permanent incontinence. Yes, radiation has risks as well, but I am prepared to accept them in lieu of the incontinence possibility. This is not a knock on surgery. It is simply my personal and individual response to the treatment options out there after having studied them thoroughly.

I am hoping to actually start treatment within the next 45-60 days. I will try to keep a running post of how it goes once I get started.
Age 61, psa 4.6, 30 days cipro, psa 4.3, biopsy 4/28/11, 2 of 12 cores positive, Gleason 6
T1c
Central Ky

SkeeterZX22v
Regular Member


Date Joined Apr 2011
Total Posts : 240
   Posted 5/23/2011 3:39 AM (GMT -6)   
JNF said...
Skeeter,

There is another HDR pioneer in Detroit named Alvaro Martinez in Royal Oaks Michigan. I have to believe that there are HDR radiology oncologists and urologists in Louisville, Indianapolis, Nashville, or some area closer. Where in Kentucky do you live? My wife is from Kentucky.

I live in Atlanta and had a couple of choices for HDR. I am happy to ask my urologist and rad-onc for any referrals they can provide in your area.

Jack


We live near Elizabethtown/Ft. Knox area.
Age 61, psa 4.6, 30 days cipro, psa 4.3, biopsy 4/28/11, 2 of 12 cores positive, Gleason 6
T1c
Central Ky

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 5/23/2011 10:57 AM (GMT -6)   
Skeeter,
Just make sure that any radiologist you use has at least 250 procedures on PC. It takes this many procedures for a radiologist to get good at it. Radiating the prostate is different from radiating other cancers because of the irregular shape, large area and closeness of other organs. For seeds and HDR brachy you want a doctor that has done at least 500.
JohnT
66 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, 4 weeks of urinary frequency and urgency; no side affects since then. 2 years of psa's all at 0.1.

lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 5/23/2011 11:31 AM (GMT -6)   
Hoping the appeal process will give you the result you are wishing for. My father was treated with Proton back in 1997 at Loma Linda California with a Gleason 6. He is still doing well 14 years later.

Larry
Age 56 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN.

Final Path report:

20% of the prostate Involved
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
Twenty month PSA - 0
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