just been diagnosed......new to forum

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Ellsworth
New Member


Date Joined Sep 2008
Total Posts : 3
   Posted 9/2/2008 1:26 AM (GMT -6)   
  
 
   Gleason score of 7, 5 out of 8 pieces in biopsy poisitive, all 5 were 5% to 10% with one  50%
 
Urologist is a robotic sugeon and recomends that strongly. Should I have it removed ?  which is best ? Radiation or surgery ? Any anwers appreciated !
 
thanks

Navy corpsman
Regular Member


Date Joined Aug 2008
Total Posts : 61
   Posted 9/2/2008 4:34 AM (GMT -6)   

Ellsworth -

Learn as much as you can about PCa so that you can make the best decision for your particular situation.  This site has the most informed support group on the net, so ask a lot of questions and stay in touch.  Also, find the best doctor at a top notch hospital.

- John


Age:  44
We have a family history of PCa.  My Dad and uncle died from it at 65 and 53. My PSA velocity increased in the last 2 years and I had to talk my GP into refering me to a urologist.
Biopsy results:  5 of 11 cores positive, all 30%. Gleason 6. T1c. PSA 2.53  Date of biopsy 15MAY08.
Open RRP at Johns Hopkins with Dr. Partin on 09JUL08.
Pathology report:  Gleason 6, pT2, neg. margins, 0 lymph node and seminal vessical, organ confined, I lost 1 nerve bundle and 22 lymph nodes.
As of today, about a month after surgery, I feel at about 80%. Urinary control seems to be improving. Little Elvis has taken a nap and has not awakened yet. I hope when he wakes up he is well rested because he is going to get one heck of a workout.
 
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 9/2/2008 8:15 AM (GMT -6)   

    Sorry to welcome you to the club.  You have to do your research and do what is best for YOU.  We are here to give encouragement and share our stories.

    Wish you well,  KW


    43 at Dx and Surgery
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


leaky
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 9/2/2008 8:20 AM (GMT -6)   
Ellsworth,

You are the only one who can make such an important decision and do not underestimate the consequences. So by all means learn all you can.

I chose surgery because I did not want to wake each morning with cancer inside if it could be removed. I wanted it all out if possible and wanted it done as quickly as possible.

Best,
70 when diagnosed in 10/2004, open surgery 12/2004, margins clear, pre surgery PSA 6.4, 3+4=7, cancer from apex to base left side, 30 gm prostate, right nerves spared, seminal vesicles & lymph nodes (6) removed.

ED & incontinence problems since surgery, life changing & indescribable unless you have experienced it.

Advance male sling 03/2004, AUS and IPP scheduled 10/2004. All work done at UT Southwestern in Dallas.


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 9/2/2008 9:03 AM (GMT -6)   
First of all take a deep breath and relax. You have some time before you need to make a decision. Learn all you can about the treatment options available and their side effects. Knowledge is empowerment learn all you can for after there are no do overs. That said do take into account that for the most surgeons will recommend surgery and radiologists will persuade you to go their route. I'm surprised you only had an 8 core biopsy when 12 is the standard. Also let me tell you biopsies will confirm you have PCa the normal ones really don't pinpoint the amount or location too well. Comparing my 12 core to my 45 core biopsy proved that to me. But as I said take your time in picking a treatment and after you do, take a week off and reflect on it. Also do see a radiologist, you can't have too many opinions to take into account.
Diagnosed 10/08/07
Age: 58
3 of 12 @5%
Psa: 2.3
3+3=6
Size: 34g
T-2-A
 
2/22/08
3D Mapping Saturation Biopsy
1 of 45 @2%
Psa:2.1
3+3=6
28g after taking Avodart
Catheter for 1 day
Good Candidate for TFT
(Targeted Focal Therapy)
Cryosurgery(Ice Balls)
Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center at Denver Fitzsimmons Campus
Catheter for 4 days
Slight soreness for 2 weeks but afterward
life returns as normal
 
7/30/08
Psa: .32 
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 9/2/2008 9:18 AM (GMT -6)   

Hi Ellsworth,

You did not say what your  PSA is and a gleason 7 is right in the middle. If the PSA is high you may want to consider bone scan, CT scan and chest xray to determine spread if any. As stated earlier get as much information about your case as possible before making the decision for a particular treatment.

I chose radiation due to indication of spread to lymph nodes. Seemed to be my best option and the treatment has been relatively easy on me. My research also indicated that radiation was as effective for control as surgery especially for localized PCa. Lots of information on this on the web.

Best of luck to you,

Don


Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
 
 


KC9AOP
Regular Member


Date Joined Jun 2008
Total Posts : 85
   Posted 9/2/2008 11:12 AM (GMT -6)   
Ellsworth,

I can only agree with all that's been said and offer that you need to talk to several oncologists before you proceed. It is a very personal choice and you need to be as informed as possible about your own condition and circumstance. This forum tends to lean towards the surgical side, and that's fine. I am in a pre-cancer state myself so I can't offer what my choice is. I can say that my father had very aggressive cancer (Gleason score 5 + 5 = 10) and very high involvement (up to 90%) and he had fantastic results with brachytherapy (sometimes called radioactive seed therapy).

One of the big questions to ask the oncologist is the recovery time and the on-going side effects of any choice. How likely is incontinence or ED or other side effects of any therapy for your case? I'm sure that there are particular details that make it impossible for a "pat" answer to these questions.

There are several very good threads on this site for questions to ask and gathering information. Take advantage of these or just drop me or anyone here a direct line and I'm sure there will be a fast answer for you.

Take care, be calm and make an informed decision.

Jim
I am age 47 - Father, Paternal Uncle and Maternal Grandfather had/have Prostate Cancer.
Father 74 years old, PSA = 10.6 Gleason = 5 + 5 = 10 (very aggressive) and high involvement in all cores. Seed therapy is the only option. Father died cancer free.
06/04/08 - At physical DRE normal, PSA test returns 4.4
06/20/08 - First Urologist visit. DRE and ultrasound finds nothing conclusive. Doctor says biopsy is the only safe way to go. Prostate volume is 40 grams.
07/11/08 - PSA test returns 4.1. Scheduled the Stereotactic Transperineal Prostate Biopsy for 7/21
07/21/08 - Had the biopsy.  Not so bad but sore on day 2. Back to work tomorrow
07/23/08 - Pathology comes back NO CANCER DETECTED!
08/01/08 - Urologist calls and says High Grade Prostatic Intraepithelial Neoplasia ("PIN") was found in my biopsy (read pre-cancerous leisions)


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 9/3/2008 5:22 AM (GMT -6)   
Ellsworth,
 
First things first: Have you had a 2nd reading of your biopsy slides ?
 
 

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 9/3/2008 7:12 PM (GMT -6)   
Ellsworth, I can tell you my husbands journey....Radiation and seed implant + lupron was done five years, before, and then the cancer returned....in the prostate. If he had had it removed it would not have been there in the prostate...With the return he had the salvage surgery with massive side effects...(and it did not get all of the cancer)....If he had had the surgery first, radiation could then have been done.....but the other way around is very difficult....You really need to look at all of the options like everyone says...and don't dismiss the side effects.....each decision has its own side effects.... Good luck and make sure you get several opinions....from both surgeons and radiologists....also, don't tell them you are having second opinions....they may agree with each other. That was our discovery.. Di
Husband Pete
dx Jan 2001 age 67 gleason 4 + 3 PSA 16.5
seed implant and conformal radiation Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06
Fistula operation 2/07 MSK
Many cystoscopies and ER visits with strictures
catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/07
AUS Operation at MSK Sept 8. Dr. Sandhu


Hepotter
New Member


Date Joined Sep 2008
Total Posts : 1
   Posted 9/6/2008 10:19 AM (GMT -6)   
You might want to check out Canada where they are doing a new procedure, currently under investigation in U.S., called "HIFI". It apparently uses a very strong, carefully focused radio frequency radiation, similar to that used in a sonogram. From what I've read, the results have been very good.

I had a radical, followed by post surgical focused external beam radiation, in 2001. I've had 0.0 PSA for seven and 1/2 years, until last month when it came up 0.03, which is so low that I am having it repeated.


There were side effects, and I dealt with all of them effectively, but all of them together beat an early death. So, make your decision...but do something!

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/6/2008 10:45 AM (GMT -6)   

Welcome Ellsworth! 

 

Welcome   to  ~ HealingWell ~ 

and 

A   Special Warm Welcome  to  You !

 

Knowledge gives us POWER.  POWER takes away the fear. 

~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~

  Click  on  link  below for important information that will help you ~ help us!!

                                                                   >>  Welcome New Members ~ to HealingWell 

The information (link) listed above is to help you get around the forum!   

This is a journey best traveled with friends.   

Welcome ~ New Friend from all the members here... on HealingWell.com 

 

Know Your Forum Moderators

v      Doting Daughter ~  Moderator for Prostate Cancer Forum 

v      James C ~  Moderator for Prostate Cancer Forum


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/6/2008 11:03 AM (GMT -6)   
Hi Ellsworth,
Sorry you are here, but these great folks will be a great aid while you travel this road.

Hepotter, I believe you are referring to HIFU ~ High Intensity Focal Ultrasound.

Any selected treatment will have side effects. Some right away some later. The two treatments stated above represent a continuing push for alternatives to radiation and surgery, the current gold standard for treating PC.

Hepotter, the welcome above is for you too. I hope you stay and continue posting your progress! We need to see more HIFU posts.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 9 '08): <0.1
I will continue HT until May '09. 
Years in Remission (3/23/07): 1
Visit my Journey at:
And at:
 
STAY POSITIVE!
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/6/2008 3:10 PM (GMT -6)   
Hi Ellsworth I to would like to welcome you to the best Country Club in the world that NO one wants to join. Do take your time and get as informed as possible, you do have options and the best way to exercise those options is be informed. You will find some wonderful friends here at HW and some even better wisdom. Do not be shy and it is ok to ask the tough questions as well as post the tough topics. I will follow your post to monitor your diagnosis and decisions.
So go ahead enjoy the club grab some popcorn and join in the fun.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


chris nz
Regular Member


Date Joined Sep 2007
Total Posts : 33
   Posted 9/6/2008 8:13 PM (GMT -6)   
Hi Ellesworth, not much to add to what has been said other than take your time and be comfortable with YOUR decision, don't be rushed into any particular procedure, it took me 5 years to decide.
Dx Nov '03, age 61, 1 of 8 +, 3 + 3, PSA before biopsy 6.5.
after biopsy PSA went 10.5 and stayed there.
Tried a lot of the can't fail 'cures'. Found 'Prostasol' a version of PC Specs.
PSA dropped to less than 1.
Still tried other supplements but reverted back to 'P'. [ a herbal estrogen.] Had problems with Deep Vein Thrombosis, now on blood thinner
March '08, second biopsy, 3 of 10 + [10-50%], 3 + 4, PSA 1.0. T2A.
Bone scan didn't show much, bone density showed early osteo in places.
Had Brachytherapy Aug 23 08


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 9/7/2008 3:00 PM (GMT -6)   
Ellsworth:

I don't know your age, but I had a Gleason 7 (4+3) with my biopsy. I was told that with a Gleason 6 & below you have time to decide, and a whole range of options. I was told by 3 different doctors not to wait more than 60 DAYS to start doing something with my 7.

I was also told that given my age and health, the gold standard was surgery, so I did that. Once they actually diced my prostate up it turns out I was a Gleason 9 with a T3a tumor - meaning it was bulging out, but had not quite broken out. It was located where the doctor could not feel it via DRE, and I never had any symptoms at all.

So - read as much as you can, talk to as many doctors as you can, and make the decision that is right for you, but I would NOT wait 5 years to do something. (Sorry, Chris NZ)

Just my opinion,
kcragman
Age: 52
March 2006: PSA 2.5

Dec 2007: PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.

March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.

May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 9/7/2008 3:19 PM (GMT -6)   
PS to Ellsworth:

In the interest of full disclosure, with the surgery, you must be mentally prepared to face incontinence and ED - at least for a while. Some men recover one or both quickly, most recover continence and full or partial sexual function over time, and a few men don't recover either one.

But there are side effects to all of the treatment options.

Good luck,
kcragman
Age: 52
March 2006: PSA 2.5

Dec 2007: PSA taken for insurance application. I did not see the results until late Jan '08 - after I was rejected. Their lab said PSA 4.5. PSA again in Feb '08: 3.7.

March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were cancerous and the 6th did not look good.

May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph nodes and associated glands all appear to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 9/8/2008 9:54 AM (GMT -6)   
You are at the fork in the road that all of us faced when informed we have PC. I would encourage you that you will get through this - - - as your biopsy is similar to mine, I would suggest you to go to page 9 (its location as of now) and read the exchange on "Between Radiation and Surgery." There is a lot of dialogue about this very issue. Decisions are individual and should come after researching things out. When you reach a comfort level you will move forward. I sincerely wish you the best! RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA .04
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