Newly diagnosed, alone and scared

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mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 6:35 PM (GMT -6)   
Hi. My name is Mike. I live in McGaheysville, Virginia. I am 64 years old and just diagnosed with PCa two weeks ago. I started seeing evidence of something wrong months ago when ejaculations began to slow and stopped, only dribbling out later. It amazes me that I can talk about this now but I guess that happens when you're sharing with people who are going through the same battles. My Gleason scores were reported to me on the phone as 8, 9 and 10. I had a bone scan last week but haven't met with my urologist yet. I have an appointment for next Friday but I need to know what's going on sooner. I am thankful to have this group since my nearest family is in Israel. You will be my family as I start fighting this battle. Right now, the battle is with depression as I read about what a Gleason score of 10 means.

Please write anytime. I need all the "family" I can find.

Bluenose
Regular Member


Date Joined May 2008
Total Posts : 260
   Posted 1/11/2009 6:41 PM (GMT -6)   

 

...hey  Mike welcome to the best site on the net for PCa and remember one thing my friend....you are NOT alone. There is quite an army here for you to lean on, ask questions of and be a part of. Just stand by, they'll all be along soon I'm sure.  Again welcome, sorry you're here but welcome just the same.


 
   age: 53
   Pre-0p PSA  Feb. 08, 5.0
      4.22.08, 4.1
      Biopsy 5.1.08 
      Gleason-3+4=7
      T2a
      5 of 15 cores positive
      Da Vinci scheduled..7.29.08..as I read somewhere on this 
      site....."the first show of the day"
       DaVinci completed 7.29.08,
       Bladder Sling installed, umbilical hernia repair  
       completed during surgery.    
        Sent home 30hrs,  JP drain in place 7days,
       Path report "cancer fully contained"....Margins clear
        Cath removed 8.8.08(ten days)...one lightly used pad 24 hours
        ED therapy begins 8.9.08. 100mg viagra three times a week,
        pump everyday and hold for ten minutes.
        8.16.08 switched to Levitra 20mg.......whahoo, got lucky...
        immediate results..... 
        9.15.08 pad free at night, one thin (light) pad during the daytime
        hours. Just because I'm chicken..!
         9.18.08 1st post-0p-PSA-Undetectable...Zero's!  Yes!
         12.22.08 2nd post-op PSA-Zeros still...  
          Pads gone 1.3.09,finally found the strength..it's all good! 
          Thanks ya'all..
 
        
           .."just tryin' to reason with hurricane season"..
 
                                                                         
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
       


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 1/11/2009 6:47 PM (GMT -6)   

Mike:

So sorry you are here...but you WILL find a lot of help and compassion on this site.  I live in Northern Virginia and was able to locate an outstanding urology group in Leesburg, which is about 100 miles from you.  With your stats you undoubtedly will want to get multiple opinions before deciding on a final treatment.  Let me know if you want this doc's info...it might well be worth driving a couple of hours to get another viewpoint.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/11/2009 6:52 PM (GMT -6)   
Welcome here, Mike, I think we all understand the scared feeling after diagnosis. No shame there. You have come into the best place on the net to deal with PC. When you have all your stats, perhaps you can list them as a signature as you see on this site, that will make it easier for others to tune into you and help offer advice. Sorry you ended up here, but glad you did. Don't ever be afraid to ask anything when here, we are here for each other, and now for you too.

David in SC
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/9/9 - pre-op, 1/13/9 - corrective operation scheduled at St. Francis
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/11/2009 7:01 PM (GMT -6)   
Hello there Mike,
Although we all know you don't want to be here, welcome to Healingwell. If you have any more test results it helps to post them here and many knowledgeable members will give their input. Higher Gleasons are of course more serious but just to help you with dealing and facing this disease and depression with the news here are a couple of stories from other patients from "yananow" facing much the same as yourself and still going strong.
www.yananow.net/Mentors/DougA.htm (diagnosed 1991)
www.yananow.net/Mentors/JackH.htm (diagnosed 1997)
www.yananow.net/Mentors/EricT.htm (diagnosed 2000)
As you can see each journey is unique and there is nothing set in stone with this disease. You are right though, it is amazing how things most of us were somewhat reluctant to discuss at one time quickly become open slather topics which in my opinion is a very good thing. Educating yourself about this disease is the most important undertaking at this stage..........understanding this disease enables you to know what the doc is saying and knowing what questions to ask. This online booklet is excellent reading for the lay person to get a good handle on the disease so i would advise to read and reread it before your next consultation.
www.yananow.net/StrangePlace/index.html
Stay with us for you will not find a more caring and informed community as the great people here.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 1/11/2009 5:59:57 PM (GMT-7)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 1/11/2009 7:13 PM (GMT -6)   
Mikee219, I'm the wife of a PC survivor and just wanted to say that I'm sorry about your dx (diagnosis). Educating yourself is very important and the Internet is a wonderful tool for learning. However, I feel I have to caution you that alot of the information you read on PC websites is generalized and, as you will quickly learn coming to this forum, EVERY SITUATION IS DIFFERENT. While Gleason 8, 9 and 10 are high scores, there is so much more to PC than these numbers. I don't believe your original post indicated your PSA at time of dx which plays a major role in staging this darn disease. The bone scan is helpful when PSA levels are 20 or higher. My husband was diagnosed in February 2008 with PC - 2 out of 10 cores were positive with a Gleason of 3+3 and 3+4. His doctor did a CT scan just to see if any lymph nodes looked unusual - thank God, everything looked fine on the test but no bone scan 'cause PSA was 6.4. We choose RALP (robot-assisted laprascopic radical prostatectomy in March 2008. His pathology report upgraded him to stage III (T3a) - because of a miniscule extension into the prostate capsule. He was fine with everything including the path report but I became a complete and total basket case, researching on the Internet and learning all I could about this stage and the prognosis. I drove myself crazy for months. Bottom line, his PSA hit 0.0 7 weeks post op and has remained there so all my worrying was for nothing.

I wish you peace as you wait to meet with your doctor and will pray that your bone scan is as clean as a whistle. Please come back and let us know how you're doing and what treatment option you choose.

mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 7:17 PM (GMT -6)   
Thanks, all. You are great, as reassuring as possible at a time like this and giving me good information.

Dave, I lived in SC for 12 years. I taught high school electronics in Anderson. It was a good place to be.

divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/11/2009 7:36 PM (GMT -6)   
Mikee, come back here and learn and be our friend......There are so many men that have gone through all this ...and wives..(like me)....so congratulations for finding this terrific site....You will figure things out with their help.....Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and 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 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 1/11/2009 7:56 PM (GMT -6)   

Mike

It was good to talk with you earlier today. I want to reinterate "Stay Positive". There are many here willing to provide good information. You are not alone with this disease. Keep us posted on what is going on and you can call anytime you need to hear a voice.

Take Care

Richard


Biospy 1/10/08 Gleason 10, Stage T1C 8 of 12 samples positive all Less Than 5%
Bone Scan, CTs and MRI Negative early 2008
March 2008 MD Anderson - No Surgery or Proton
Feb & Mar PET (Possilbe Lymph Nodnte Involvme & Prostacint Scan Negative
March 2008 U of Florida Proton Therapty Lupron & Casodek May 08 for 2 years
Completed 25 IMRT and 17 PBRT U of Florida Proton Therapy Institute 7/24/08
Latest CT June 08) showed no trace of tumor in lymph node area
7/24/2008 PSA .21, free PSA .08, Percent free PSA 38.1, testosterone 14.6
8/1/2008 2nd Lupon Shot
10/27/2008 PSA <.1
12/9/2008 3rd Lupon Shot
12/11/08 MRI Suspicious for Metastic disease L5 & S1
Bone Scan 12/19/08 Indicates No Bone Mets
Our Journey is on WWW.GLEASONSCORE10.COM


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 8:01 PM (GMT -6)   
Thanks again, Richard. It was good talking to you too.

Mike

mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 8:05 PM (GMT -6)   
Hi Tudpock,

Could you send that info about the urology group in Northern Virginia.

Thanks.

Mike

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 1/11/2009 8:17 PM (GMT -6)   
Mike-
Welcome to HW. I am sorry you have to be here, but I am confident we can be your online family :) As other members have already posted, please stay positive and ask away.
Father's Age 62 (now 63)
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 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. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/11/2009 8:28 PM (GMT -6)   
Mickey219- I am proof you have hope my stats are probably higher than yours are going to be (perhaps) I am doing pretty decent for('incurable')- 7 yrs. survivor. I got the gleasons 7,8,9 on both sides of the gland about equally., bPsa 46.7 12 of 12 biopsies loaded with PCa 75-95% in every single one (Partin tables would have had me glowing in the dark-ha-ha), I had total urinary blockage (usually a bad prognostic evalution for PCa patients in general).

Alot of ways to fight this beast, you don't have to choose my road at all, don't forget about either.

Some people thought I would be gone in a few years, some might even wish it, ......sorry there is fight in this dog and I love learning new tricks.

 

You said to write to you....where is the email address?? 

Post Edited (zufus) : 1/12/2009 1:36:23 PM (GMT-7)


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 8:34 PM (GMT -6)   
Hi Rob/Zufus

Thanks for the encouragement. I'm looking for some hope that I'll be around for a little while longer. You're giving me that and reason to fight.

Thanks and thanks all for the welcome and the encouragement.

Mike

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/11/2009 8:41 PM (GMT -6)   
Mike,
Yeah, I only live about 25 miles from Anderson, don't go there often, as I am only 10 miles from Greenville. Small world.

David
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/9/9 - pre-op, 1/13/9 - corrective operation scheduled at St. Francis
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 1/11/2009 8:49 PM (GMT -6)   

Mike:

Here is the link: http://www.urologygroupvirginia.com/

My urologist is Dr. O'Brien.  He and Dr. Lailas are the heavyweights in the practice.  O'Brien is a urologist/surgeon by trade but will send you in the right direction...as evidenced by my ending up with radiation instead of surgery.

They have multiple offices and will get you into one of them quickly if you let them know of the urgency.  If you go, make sure you take your test results.  It's quite possible they may ask for your biopsy to be tested by another lab...they use Bostwick in Richmond...as Dr. Bostwick is one of the best prostate pathlogists in the world.

Let us know how you progress.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 8:49 PM (GMT -6)   
I shopped in Greenville, had electronics competitions for my students there and went to Beth Israel synagogue for a few years.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/11/2009 8:51 PM (GMT -6)   
Hi Mike,
Welcome to HealingWell. You made a good decision to come here to find friends. There are so many great people here. This site is clearly the finest I have visited, and you are correct in saying "family" when describing what this site is about...I am very glad you are here and will welcome my friendship as well. I am a Gleason 7 guy, but I have a later stage, and a lot of experience with first line and adjuvant therapies. So anything you need at all, feel free to write here or to my Email address in my profile (Just click my screen name). Gleason 10 does not much more than a number so don't let the biopsy get you down. I am curious, what was your PSA?

Welcome again to the best site on the web for caring and compassionate support.

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, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/11/2009 8:58 PM (GMT -6)   
Well Mike, if you ever drop south from Virginia, you are welcome to come visit your old home turf, we could compare PC stories at that time.

David
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/9/9 - pre-op, 1/13/9 - corrective operation scheduled at St. Francis
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 9:03 PM (GMT -6)   
I think my PSA was 8.6. Then the doctor wanted to do it again a month later and said not to have any ejaculations for three days before. I figured that was to raise the PSA so I decided to act like a teenager. I raised the PSA to 12. I hope I did it and not the disease. I really have done some stupid things concerning this.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/11/2009 9:10 PM (GMT -6)   
Have you had any contact with an oncologist?  It's not a bad idea to get another oncological opinion based on the G10.  What therapies are you considering?
 
Tony

mikee219
Regular Member


Date Joined Jan 2009
Total Posts : 53
   Posted 1/11/2009 9:15 PM (GMT -6)   
I don't even know the outcome of my bone scan, taken last week. The urologist hasn't explained things yet. Will he suggest an oncologist, should I bring it up or do I look in the Yellow Pages? That sounds funny but I really don't know how this works.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/11/2009 9:55 PM (GMT -6)   
How far are you from a major center?
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, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 1/11/2009 10:19 PM (GMT -6)   

Mike:

I can't say what your urologist will do.  Unfortunately, some will push surgery...which might or might not be the answer for you.  That's why it is essential that you get other opinions.  I can assure you that the urologist to which I referred you will, without question, give you referrals so that you don't need to worry about looking in the yellow pages!

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 12/30/08.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 1/11/2009 10:35 PM (GMT -6)   
Mike, Welcome to the club. I really can't offer much that all the others have done, so let me tell you that you are welcome as our latest family member and will be loved and adored by all of us... turn Like any big family, ours can be messy and loud and contentious at times, but we still have love and respect for each other.
James C. Age 61
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/07 Nerve sparing open Retropubic Radical Prostatectomy
9/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.

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